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<div class="main-content lit-style" itemscope="itemscope" itemtype="http://schema.org/Book"><div class="meta-content fm-sec"><div class="iconblock whole_rhythm clearfix no_top_margin"><a href="https://www.nice.org.uk" title="National Institute for Health and Care Excellence (NICE)" class="img_link icnblk_img" ref="pagearea=logo&targetsite=external&targetcat=link&targettype=publisher"><img class="source-thumb" src="/corehtml/pmc/pmcgifs/bookshelf/thumbs/th-niceng206er2-lrg.png" alt="Cover of Information, education and support for health and social care professionals" /></a><div class="icnblk_cntnt"><h1 id="_NBK589852_"><span itemprop="name">Information, education and support for health and social care professionals</span></h1><div class="subtitle">Myalgic encephalomyelitis (or encephalopathy) / chronic fatigue syndrome: diagnosis and management</div><p><b>Evidence review B</b></p><p><i>NICE Guideline, No. 206</i></p><div class="half_rhythm">London: <a href="https://www.nice.org.uk" ref="pagearea=meta&targetsite=external&targetcat=link&targettype=publisher"><span itemprop="publisher">National Institute for Health and Care Excellence (NICE)</span></a>; <span itemprop="datePublished">2021 Oct</span>.<div class="small">ISBN-13: <span itemprop="isbn">978-1-4731-4221-3</span></div></div><div><a href="/books/about/copyright/">Copyright</a> © NICE 2021.</div></div></div></div><div class="body-content whole_rhythm" itemprop="text"><div id="niceng206er2.s1"><h2 id="_niceng206er2_s1_">Information, education and support for health and social care professionals</h2><div id="niceng206er2.s1.1"><h3>Review questions</h3><ol><li class="half_rhythm"><div>What information, education and support do health and social care professionals who provide care for people with ME/CFS need?</div></li><li class="half_rhythm"><div>What are the barriers and facilitators to providing information, education and support for health and social care professionals?</div></li></ol></div><div id="niceng206er2.s1.2"><h3>Introduction</h3><p>ME/CFS is a condition which may have a profound and long-lasting effect on the lives of those affected by it. It affects approximately between 150,000 to 250,000 people in the UK. It is not generally included in the training curriculums of health and social care professionals. Different sets of diagnostic criteria, different names for the condition (or possibly conditions), and continuingly emerging research regarding aetiology, pathogenesis and treatment all contribute to confusion on the part of practitioners. As a consequence, many health and social care professionals are ill-equipped to manage people with this multifaceted condition. It is important to identify the information, education and support needs of health and social care professionals and how best to address these needs.</p><p>The committee used both reviews to inform their recommendations in these areas. The committee discussion of the evidence and interpretation is in <a href="#niceng206er2.s4">section 3</a>.</p></div></div><div id="niceng206er2.s2"><h2 id="_niceng206er2_s2_">1. Information, education and support</h2><div id="niceng206er2.s2.1"><h3>1.1. Review question</h3><p>What information, education and support do health and social care professionals who provide care for people with ME/CFS need?</p><div id="niceng206er2.s2.1.1"><h4>1.1.1. Summary of the protocol</h4><p>For full details see the review protocol in <a href="#niceng206er2.appa">Appendix A</a>.</p></div><div id="niceng206er2.s2.1.2"><h4>1.1.2. Methods and process</h4><p>This evidence review was developed using the methods and process described in <a href="https://www.nice.org.uk/process/pmg20/chapter/introduction-and-overview" ref="pagearea=body&targetsite=external&targetcat=link&targettype=uri">Developing NICE guidelines: the manual</a>.</p><p>Methods specific to this review question are described in the review protocol in <a href="#niceng206er2.appa">appendix A</a> and the <a href="/books/NBK589852/bin/niceng206er2_bm4.pdf">methods</a> document.</p><p>Declarations of interest were recorded according to <a href="https://www.nice.org.uk/about/who-we-are/policies-and-procedures" ref="pagearea=body&targetsite=external&targetcat=link&targettype=uri">NICE’s conflicts of interest policy</a>.</p></div><div id="niceng206er2.s2.1.3"><h4>1.1.3. Qualitative evidence</h4><div id="niceng206er2.s2.1.3.1"><h5>1.1.3.1. Included studies</h5><p>Sixteen qualitative studies were included in the review;<a class="bk_pop" href="#niceng206er2.ref19"><sup>19</sup></a><sup>,</sup>
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<a class="bk_pop" href="#niceng206er2.ref24"><sup>24</sup></a><sup>,</sup>
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<a class="bk_pop" href="#niceng206er2.ref30"><sup>30</sup></a><sup>,</sup>
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<a class="bk_pop" href="#niceng206er2.ref31"><sup>31</sup></a><sup>,</sup>
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<a class="bk_pop" href="#niceng206er2.ref40"><sup>40</sup></a><sup>–</sup><a class="bk_pop" href="#niceng206er2.ref42"><sup>42</sup></a><sup>,</sup>
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<a class="bk_pop" href="#niceng206er2.ref45"><sup>45</sup></a><sup>,</sup>
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<a class="bk_pop" href="#niceng206er2.ref57"><sup>57</sup></a><sup>,</sup>
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<a class="bk_pop" href="#niceng206er2.ref66"><sup>66</sup></a><sup>,</sup>
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<a class="bk_pop" href="#niceng206er2.ref68"><sup>68</sup></a><sup>,</sup>
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<a class="bk_pop" href="#niceng206er2.ref84"><sup>84</sup></a><sup>,</sup>
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<a class="bk_pop" href="#niceng206er2.ref106"><sup>106</sup></a><sup>,</sup>
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<a class="bk_pop" href="#niceng206er2.ref115"><sup>115</sup></a><sup>,</sup>
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<a class="bk_pop" href="#niceng206er2.ref124"><sup>124</sup></a><sup>,</sup>
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<a class="bk_pop" href="#niceng206er2.ref19"><sup>130</sup></a> these are summarised in <a class="figpopup" href="/books/NBK589852/table/niceng206er2.tab2/?report=objectonly" target="object" rid-figpopup="figniceng206er2tab2" rid-ob="figobniceng206er2tab2">Table 2</a> below. Key findings from these studies are summarised in Section <a class="figpopup" href="/books/NBK589852/table/niceng206er2.tab7/?report=objectonly" target="object" rid-figpopup="figniceng206er2tab7" rid-ob="figobniceng206er2tab7">Table 7</a> and <a class="figpopup" href="/books/NBK589852/table/niceng206er2.tab8/?report=objectonly" target="object" rid-figpopup="figniceng206er2tab8" rid-ob="figobniceng206er2tab8">Table 8</a>below. See also the study selection flow chart in <a href="#niceng206er2.appb">Appendix B</a>, study evidence tables in <a href="#niceng206er2.appd">Appendix D</a>, and excluded studies lists in <a href="#niceng206er2.appf">Appendix F</a>.</p><div id="niceng206er2.s2.1.3.1.1"><h5>Adults</h5><p>The evidence presented is from studies which included health care professionals caring for adults with ME/CFS (n=9); adults with ME/CFS (n=4); and significant others<sup><a class="bk_pop" href="#niceng206er2.fn1">*</a></sup> of people with ME/CFS (n=1). Findings emerging from those studies are presented together as common themes emerged from the different study populations. One study<a class="bk_pop" href="#niceng206er2.ref19"><sup>19</sup></a> included all three relevant populations; health professionals, people with ME/CFS, and ‘significant others’ .</p><h5 id="NBK589852_footnotes">Footnotes</h5><dl class="temp-labeled-list small"><dt>*</dt><dd><div id="niceng206er2.fn1"><p class="no_top_margin">The term ‘significant others’ is used in the study to describe people identified by person with ME/CFS such as friends, partners, spouses, adult children.</p></div></dd></dl></div><div id="niceng206er2.s2.1.3.1.2"><h5>Children and young people</h5><p>The evidence in relation to children and young people is from studies which included adolescents who had recovered from ME/CFS (n=1), and health care professionals caring for children and young people with ME/CFS (n=1).</p><p>In line with the review protocol the evidence relevant to adults is reported separately to that for children and young people. The severity of ME/CFS of people in studies was mixed or unclear. No evidence was identified for social care professionals caring for people with ME/CFS.</p><p>A large number of papers were identified for this review. Studies were included until saturation of themes was reached. Data saturation is the point at which no new themes, or data contributing to themes emerged from the studies. Studies not included due to saturation being reached are listed in Table 11.</p><p>Where ‘CFS/ME’ or ‘CFS’ has been used in the evidence review, it is in order to reflect the terminology used in the included studies.</p></div></div><div id="niceng206er2.s2.1.3.2"><h5>1.1.3.2. Excluded studies</h5><p>See excluded studies in <a href="#niceng206er2.appf">Appendix F</a>.</p></div></div><div id="niceng206er2.s2.1.4"><h4>1.1.4. Summary of studies included in the qualitative evidence</h4><p>See <a href="#niceng206er2.appd">Appendix D</a> for full evidence tables.</p></div><div id="niceng206er2.s2.1.5"><h4>1.1.5. Summary of the qualitative evidence</h4><p>See <a href="#niceng206er2.appe">Appendix E</a> for full GRADE-CERQual tables.</p><div id="niceng206er2.s2.1.5.1"><h5>1.1.5.1. Narrative summary of review findings and quality</h5><div id="niceng206er2.s2.1.5.1.1"><h5>Information, education and support needs of health care professionals caring for adults with ME/CFS</h5><div id="niceng206er2.s2.1.5.1.1.1"><h5>Review finding 1: Health care professionals’ awareness and knowledge of ME/CFS</h5><p>Both healthcare professionals (HCPs) and patients with ME/CFS reported that there was a general lack of knowledge and belief in ME/CFS from HCPs and in the healthcare system. HCPs admitted to having little clinical information available to them and were unprepared by their medical training and continuing education to diagnose and manage ME/CFS. They often had to seek information from non-clinical sources. There was variation among HCPs about their beliefs in the aetiology of ME/CFS, with physicians variously attributing the condition to psychosocial factors or physiological theories.</p><p>Several studies indicated that people with ME/CFS do not think HCPs are adequately prepared from their professional training to diagnose and manage ME/CFS. This meant that patients experienced varied, often negative, experiences when reporting to GPs with symptoms. Patients reported having to consult multiple GPs before having their symptoms taking seriously and eventually receiving a diagnosis of ME/CFS. Some people reported having to take information to their GPs to educate them about ME/CFS, having learned about the condition through media and online research.</p><p>Medical students reported that there was little to no education around ME/CFS in the medical curriculum. People with ME/CFS also felt that more teaching about ME/CFS on the UK undergraduate curriculum was required.</p><p>Explanation of quality assessment: minor concerns over methodological limitations with minor concerns over four of the contributing studies (due to concerns over data analysis with data often supported by single quotes in two studies, due to the potential influence of the researcher on the findings in one study where half of the participants were given a systematic review on the effectiveness of mental health interventions prior to the data collection and due to concerns over the recruitment strategy in one study where recruitment of participants was done through responses to an advertisement, therefore risking over-representation of students who are more informed or have stronger views on ME/CFS); moderate concerns over three studies (due to concerns over participant recruitment with selection of HCP participants by ME/CFS patients in one study and concerns over data analysis with coding and analysis undertaken by a single researcher in that study, due to the role of the researcher not being discussed and concerns over data analysis due to a lack of sufficient detail and some themes supported by single quotes in one study and due to concerns over the appropriateness of the data collection method of one study that was a follow-up to a quantitative study with open-ended online responses); no methodological concerns over four studies. No concerns about the coherence of the finding. Minor concerns over relevance with moderate concerns over two studies (due to participants in one study being a subset of a previous quantitative study who were self-identified as having ME/CFS rather than diagnosed according to accepted criteria and due to concerns over the applicability of one study conducted on the Belgian health care system to the NHS setting); but minor concerns in six of the contributing studies (due to the research aim driving the theme being different to that of the current review in three studies, due to participants having been previously recruited in a RCT in two studies, due to concerns over relevance of one study that was published prior to new guidelines and diagnostic criteria, due to concerns over the small and homogenous sample size and lack of representation of Health professionals in the sample of one study, and due to the population of medical students all attending the same medical school rather than practicing HCPs in one study); no concerns over relevance in five studies. No concerns over adequacy. Overall assessment of confidence was moderate due to methodological limitations and relevance.</p></div><div id="niceng206er2.s2.1.5.1.1.2"><h5>Review finding 2: Consensus on diagnostic criteria</h5><p>HCPs expressed the need for an agreed diagnostic criteria and case definitions of ME/CFS. Depending on the criteria and case definitions used by different HCPs, patients may be diagnosed differently between services, often delaying appropriate treatment for some patients. Frequently HCPs talked about how a diagnosis of ME/CFS was made only by exclusion in absence of positive diagnostic criteria.</p><p>It was also reported that there is a need for HCPs to better understand the relationship between ME/CFS and depression, where misdiagnoses are possible and patients can be referred to the wrong services as a result.</p><p>While some HCPs found the 2007 NICE ME/CFS guidelines helpful, they thought that the lack of any diagnostic test giving conclusive proof of the condition impacted both patients and practitioners, and that until such a test was developed, the existence of the condition would remain in doubt amongst some HCPs.</p><p>For some HCPs there was confusion around labels for ME/CFS, with some unclear of the difference between ME, CFS, chronic fatigue or post viral fatigue. HCPs found the CDC diagnostic guidelines unclear and unhelpful as a diagnosis of exclusion.</p><p>Explanation of quality assessment: minor concerns over methodological limitations with moderate limitations in one study (due to concerns over participant recruitment with selection of HCP participants by ME/CFS patients and over data analysis with coding and analysis undertaken by a single researcher) but minor limitations in two studies (due to concerns over data analysis with data often supported by single quotes) and no concerns in the other contributing study; no concerns about coherence; minor concerns over relevance due to the findings in two studies being driven by the studies’ original aim that differed from that of the current review and due to the contribution of an older study potentially losing relevance (e.g. published prior to new guidelines and diagnostic criteria); no concerns about adequacy. Overall assessment of confidence was moderate due to the methodological limitations and relevance.</p></div><div id="niceng206er2.s2.1.5.1.1.3"><h5>Review finding 3: Symptom measures</h5><p>HCPs reported that they found it frustrating that they could not measure how a patient was affected by their condition. Without definitive tests available to them, HCPs are often reluctant to make a diagnosis considering the ‘invisible’ nature of ME/CFS symptoms and the disparity between clinical signs and subjective symptoms. HCPs hoped for more integration of useful physiological measures in assessing ME/CFS but knew that this was difficult considering the lack of an identified biomarker.</p><p>Some HCPs considered recovery to be when patients no longer meet diagnostic criteria, given the lack of measures for assessing recovery available to them. Some HCPs used exercise tests as objective measures, but others were sceptical of the sensitivity of these kinds of tests. HCPs therefore identified the need for consensus case definitions on how to measure recovery in ME/CFS patients, to ensure there was consistency across services.</p><p>Explanation of quality assessment: very minor concerns over methodological limitations with minor concerns in one study (due to data analysis with themes mostly supported by single quotes) but no further concerns identified; no concerns about coherence; minor concerns about relevance due to the aim of the contributing studies driving the theme being different from that of the current review and due to participants in one study having been previously recruited in a RCT; no concerns about adequacy with sufficient information to support the theme. Overall assessment of confidence was moderate due to very minor and minor concerns across two domains of quality assessment.</p></div><div id="niceng206er2.s2.1.5.1.1.4"><h5>Review finding 4: Clinical pathway</h5><p>HCPs thought the label of ME/CFS could be problematic because it does not offer a clear management pathway for the HCP or the patient. This was described as another reason why GPs are reluctant to make a diagnosis of ME/CFS, and will often use the label as a last resort. Some GPs did not know where to refer patients once a diagnosis of ME/CFS was reached, considering specialist services to be fragmented and often not having the required contact information. This was also true of mental health services, with HCPs’ lack of knowledge about mental health services cited as a reason why ME/CFS patients were often not referred to receive these types of intervention.</p><p>Explanation of quality assessment: minor concerns over methodological limitations with minor concerns in two studies (due to the potential influence of the researcher on the findings in one study and concerns over data analysis with findings mostly supported by single quotes in one study) and no concerns over the third contributing study; no concerns about coherence; no concerns about relevance as concerns over the representativeness of the sample of one study due to participants having been previously recruited in a RCT were too minor to lower our overall assessment of relevance; no concerns about adequacy with sufficient information supporting the theme. Overall assessment of confidence was high due to the concerns over methodological limitations being too minor and no further concerns identified.</p></div><div id="niceng206er2.s2.1.5.1.1.5"><h5>Review finding 5: Training</h5><p>HCPs identified the need for training to address the lack of understanding and belief of the ME/CFS among professionals. Some GPs and nurses suggested that an easily accessible online training resource would be useful and might be favoured over face-to-face training due to the perception that for many ME/CFS was a low priority and HCPs might not want to dedicate a lot of time to training. HCPs and specialists agreed that specialist services were ideally placed to provide the training that GPs and nurses need to recognise and manage ME/CFS.</p><p>Explanation of quality assessment: minor concerns over methodological limitations with minor concerns in all three contributing studies (due to concerns over data analysis with findings mostly supported by single quotes in two studies and due to concerns over participant recruitment in one study); no concerns over coherence; very minor concerns over relevance due to the population of one study being medical students rather than practicing HCPs and the homogeneity of that population as all students were attending the same medical school at the University of Manchester, but no similar concerns in any of the other studies; no concerns about adequacy. Overall assessment of confidence was moderate due to minor concerns over methodological limitations and very minor concerns over relevance.</p></div><div id="niceng206er2.s2.1.5.1.1.6"><h5>Review finding 6: Information resources</h5><p>GPs and nurses said it would be useful to be able to print information on symptom management from an online resource, or show an online video, during consultation. It was suggested that a DVD or similar video resource might be useful for those patients who struggle to read written resources because of fatigue, concentration and memory problems.</p><p>Several studies identified the media as a common source of information about ME/CFS to both HCPs and patients with ME/CFS. However, it was also observed that debate in the media and influence from individuals’ opinions could also lead to scepticism about the legitimacy of the condition.</p><p>HCPs from specialist services reported finding standard information packs and DVDs useful, often recommending leaflets produced by patient support organisations such as <i>Action for ME</i> and <i>ME Association</i>. Specialists also reported referring people to the <i>Citizen’s Advice Bureau</i> or <i>Disability Information and Advice Line</i> for advice on disability-related support matters, as well as expressing the importance of providing information for employers of ME/CFS.</p><p>Explanation of quality assessment: very minor concerns over methodological limitations with very minor concerns over both contributing studies (due to data analysis with themes mostly supported by single quotes) that were considered too minor to lower our overall confidence in the finding; no concerns about coherence; no concerns over relevance; no concerns about adequacy with sufficient information to support the theme. Overall assessment of confidence was high as methodological limitations were very minor and no further concerns were identified.</p></div><div id="niceng206er2.s2.1.5.1.1.7"><h5>Review finding 7: Support from specialist services</h5><p>GPs suggested that it was helpful to have the support of ME/CFS specialists. GPs often lacked confidence in making an ME/CFS diagnosis alone and referring a patient to secondary care assisted in achieving a diagnosis. However, GPs reported limited availability of helpful services that could support them.</p><p>A number of GPs and nurses said they were unaware of specialist ME/CFS services. ME/CFS specialists expressed frustration that GPs in their region often did not refer patients to their services. HCPs had often difficulties referring to specialists due to the fragmentation of services and lack of collaboration between the two services. Patients also showed concern about long waiting times for specialist services and suggested that increased communication between primary and secondary care might allow GPs to better manage them.</p><p>Specialist HCPs emphasised that there was a need for specialist services to be more ‘visible’ and for them to provide training and education for other HCPs. Noting in particular GPs, due to their lack of knowledge and awareness and direct contact with people with ME/CFS. Specialists were found to have the experience and expertise required to support GPs and other HCPs in reaching an ME/CFS diagnosis, giving advice on appropriate medication, providing services such as specialist Occupational Therapy and supporting patients to apply for benefits.</p><p>Explanation of quality assessment: moderate concerns over methodological limitations with minor and moderate concerns in the two contributing studies (due to concerns over data analysis with findings supported by single quotes in both studies and the potential influence of the researcher on the findings not being discussed in one study); no concerns about the coherence of the findings; minor concerns over relevance due to concerns over the applicability of one study that had been conducted in the Belgian health system to the NHS setting; no concerns about adequacy with sufficient information to support the theme. Overall assessment of confidence was moderate due to methodological limitations and concerns over relevance.</p></div><div id="niceng206er2.s2.1.5.1.1.8"><h5>Review finding 8: Information about support groups</h5><p>When HCPs wanted to highlight healthcare services and information to their patients, such as local support groups and advice on benefits, they were unable to do because they did not have details of relevant contacts. Other HCPs said that they were hesitant to recommend ME/CFS support groups because they had little knowledge of them, or opinion was divided over whether these support groups were harmful or helpful.</p><p>Explanation of quality assessment: minor concerns over methodological limitations with moderate concerns over one study (due to concerns over participant selection and data analysis with coding and analysis by a single researcher) and minor concerns over two studies (due to concerns over data analysis with some findings supported by single quotes); no concerns about the coherence of the finding; very minor concerns over relevance due to information in one study being driven by the study’s original aim that differed from that of the current review; no concerns over adequacy. Overall assessment of confidence was moderate due to concerns over methodological limitations as concerns over relevance were too minor to lower the overall confidence rating .</p></div><div id="niceng206er2.s2.1.5.1.1.9"><h5>Review finding 9: Exposure to people with ME/CFS</h5><p>HCPs observed that the most valuable source of evidence available to them had been observation of patients outside of the clinical setting. Seeing the activities and personal life of someone with ME/CFS helped HCPs to recognise and understand what it’s like to live with the condition. For example, regular phone conversations with patients helped HCPs to observe the coming and going of symptoms and progress of management. Conversations with patients’ ‘significant others’, that is, partners, family members and friends, could sometimes give a more accurate account of the patient’s life and impact of ME/CFS symptoms than could be expressed subjectively by the person with ME/CFS.</p><p>Patient feedback was identified by HCPs as important to understand why someone may have stopped making appointments. It is sometimes unclear to HCPs whether this is because they have improved or whether there are other circumstances why they stopped engaging. This lack of information gives an inaccurate picture about the course ME/CFS takes and how patients recover.</p><p>Exposure to new presentations of ME/CFS is considered important for improving primary care practice, enabling HCPs to recognise the condition and develop confidence in their diagnostic skills. This includes careful history-taking and listening carefully and patiently to presentation of symptoms.</p><p>Explanation of quality assessment: very minor concerns over methodological limitations with no concerns over the majority of the contributing studies and minor concerns over one study (due to concerns over data analysis with some data supported by single quotes); no concerns about the coherence of the finding; very minor concerns about relevance due to the population of one study having been previously recruited for a RCT with a different research to that of this review; no concerns about adequacy. Overall assessment of confidence was high with concerns over methodological limitations and relevance being too minor to lower the confidence rating.</p></div></div><div id="niceng206er2.s2.1.5.1.2"><h5>Information, education and support needs of health care professionals caring for children and young people with ME/CFS</h5><div id="niceng206er2.s2.1.5.1.2.1"><h5>Review finding 1: Health care professionals’ awareness and knowledge of ME/CFS</h5><p>Paediatric specialists HCPs caring for children and young people with ME/CFS reported that they experienced uncertainty about ME/CFS due to a lack of understanding of its symptoms and the underlying aetiology. Young people with ME/CFS described the difficulties they had experienced with HCPs who lacked understanding and awareness of their condition and provided little helpful information.</p><p>Explanation of quality assessment: minor concerns over methodological limitations with minor limitations in both contributing studies (due to concerns over the small sample size and recruitment strategy in both studies); no concerns about the coherence of the findings; minor concerns over relevance due to population of one study consisting of recovered patients whose views may differ from patients with active ME/CFS; no concerns about adequacy. Overall assessment of confidence was moderate due to minor concerns over methodological limitations and relevance.</p></div><div id="niceng206er2.s2.1.5.1.2.2"><h5>Review finding 2: Consensus on diagnostic criteria</h5><p>HCPs caring for children and young people with ME/CFS found it difficult to identify and appropriate label ME/CFS. There was thought to be diagnostic variability different HCPs when diagnosing children with ME/CFS due to differing understandings of the condition and the lack of a definitive test, resulting in a difficult diagnostic process for the patient. There is also inconsistency in the labels applied to children with ME/CFS, with confusion around the terms ‘chronic fatigue’ and ‘CFS’.</p><p>Explanation of quality assessment: minor concerns over methodological limitations in the contributing study (due to concerns over the recruitment strategy); no concerns about the coherence of the finding; no concerns about relevance; minor concerns about adequacy due to support from a single study with a small sample size. Overall assessment of confidence was moderate due to minor concerns over methodological limitations and adequacy.</p></div><div id="niceng206er2.s2.1.5.1.2.3"><h5>Review finding 3: Clinical pathway</h5><p>HCPs caring for children and young people with ME/CFS described their uncertainty around appropriateness and effectiveness of treatment pathways. HCPs believed that the choice of label given to a young person influenced the subsequent treatment and recovery pathways.</p><p>Explanation of quality assessment: minor concerns over methodological limitations in the contributing study (due to concerns over the recruitment strategy); no concerns about the coherence of the finding; no concerns about relevance; minor concerns about adequacy due to support from a single study with a small sample size. Overall assessment of confidence was moderate due to minor concerns over methodological limitations and adequacy.</p></div><div id="niceng206er2.s2.1.5.1.2.4"><h5>Review finding 4: Training</h5><p>HCPs caring for children and young people with ME/CFS described the need for standardised specialist training to address lack of understanding and uncertainty around the condition and to ensure that there is consistency of treatment across health care services.</p><p>Explanation of quality assessment: minor concerns over methodological limitations in the contributing study (due to concerns over the recruitment strategy); no concerns about the coherence of the findings; no concerns about relevance; minor concerns about adequacy due to support from a single study with a small sample size. Overall assessment of confidence was moderate due to minor concerns over methodological limitations and adequacy.</p></div></div></div></div><div id="niceng206er2.s2.1.6"><h4>1.1.6. Economic evidence</h4><p>The committee agreed that health economic studies would not be relevant to this review question, and so were not sought.</p></div></div></div><div id="niceng206er2.s3"><h2 id="_niceng206er2_s3_">2. Barriers and facilitators to providing information, education and support</h2><div id="niceng206er2.s3.1"><h3>2.1. Review question</h3><p>What are the barriers and facilitators to providing information, education and support for health and social care professionals?</p><div id="niceng206er2.s3.1.1"><h4>2.1.1. Summary of the protocol</h4><p>For full details see the review protocol in <a href="#niceng206er2.appa">Appendix A</a>.</p></div><div id="niceng206er2.s3.1.2"><h4>2.1.2. Methods and process</h4><p>This evidence review was developed using the methods and process described in <a href="https://www.nice.org.uk/process/pmg20/chapter/introduction-and-overview" ref="pagearea=body&targetsite=external&targetcat=link&targettype=uri">Developing NICE guidelines: the manual</a>. Methods specific to this review question are described in the review protocol in <a href="#niceng206er2.appa">appendix A</a> and the <a href="/books/NBK589852/bin/niceng206er2_bm4.pdf">methods</a> document.</p><p>Declarations of interest were recorded according to <a href="https://www.nice.org.uk/about/who-we-are/policies-and-procedures" ref="pagearea=body&targetsite=external&targetcat=link&targettype=uri">NICE’s conflicts of interest policy</a>.</p></div><div id="niceng206er2.s3.1.3"><h4>2.1.3. Qualitative evidence</h4><div id="niceng206er2.s3.1.3.1"><h5>2.1.3.1. Included studies</h5><p>Fifteen qualitative studies were included in the review;<a class="bk_pop" href="#niceng206er2.ref13"><sup>13</sup></a><sup>,</sup>
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<a class="bk_pop" href="#niceng206er2.ref15"><sup>15</sup></a><sup>,</sup>
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<a class="bk_pop" href="#niceng206er2.ref18"><sup>18</sup></a><sup>,</sup>
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<a class="bk_pop" href="#niceng206er2.ref19"><sup>19</sup></a><sup>,</sup>
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<a class="bk_pop" href="#niceng206er2.ref22"><sup>22</sup></a><sup>,</sup>
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<a class="bk_pop" href="#niceng206er2.ref24"><sup>24</sup></a><sup>,</sup>
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<a class="bk_pop" href="#niceng206er2.ref31"><sup>31</sup></a><sup>,</sup>
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<a class="bk_pop" href="#niceng206er2.ref37"><sup>37</sup></a><sup>,</sup>
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<a class="bk_pop" href="#niceng206er2.ref40"><sup>40</sup></a><sup>,</sup>
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<a class="bk_pop" href="#niceng206er2.ref57"><sup>57</sup></a><sup>,</sup>
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<a class="bk_pop" href="#niceng206er2.ref66"><sup>66</sup></a><sup>,</sup>
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<a class="bk_pop" href="#niceng206er2.ref115"><sup>115</sup></a><sup>,</sup>
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<a class="bk_pop" href="#niceng206er2.ref124"><sup>124</sup></a><sup>,</sup>
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<a class="bk_pop" href="#niceng206er2.ref130"><sup>130</sup></a><sup>,</sup>
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<a class="bk_pop" href="#niceng206er2.ref147"><sup>147</sup></a> these are summarised in <a class="figpopup" href="/books/NBK589852/table/niceng206er2.tab6/?report=objectonly" target="object" rid-figpopup="figniceng206er2tab6" rid-ob="figobniceng206er2tab6">Table 6</a> below. Key findings from these studies are summarised in the clinical evidence summary below (<a class="figpopup" href="/books/NBK589852/table/niceng206er2.tab7/?report=objectonly" target="object" rid-figpopup="figniceng206er2tab7" rid-ob="figobniceng206er2tab7">Table 7</a>). See also the study selection flow chart in <a href="#niceng206er2.appc">Appendix C</a>, study evidence tables in <a href="#niceng206er2.appd">Appendix D</a>, and excluded studies lists in <a href="#niceng206er2.appf">Appendix F</a>.</p><p>The evidence came from studies conducted with health care professionals caring for adults with ME/CFS (n=3), adults with ME/CFS and their carers (n=6), or a mix of HCPs and adults with ME/CFS/carers (n=6). Two studies were identified that focused on children and young people with ME/CFS; these have been stratified for thematic analysis. Ten of the twelve studies featuring people with ME/CFS had a mixed or unclear severity of ME/CFS, while two studies explicitly excluded people with severe ME/CFS<a class="bk_pop" href="#niceng206er2.ref22"><sup>22</sup></a>.</p><p>The evidence from the health care professionals and the adults with ME/CFS is reported together as common themes were identified in both populations.</p></div><div id="niceng206er2.s3.1.3.2"><h5>2.1.3.2. Excluded studies</h5><p>For full list of excluded studies see <a href="#niceng206er2.appf">Appendix F</a>.</p></div></div><div id="niceng206er2.s3.1.4"><h4>2.1.4. Summary of studies included in the qualitative evidence</h4><p>See <a href="#niceng206er2.appd">Appendix D</a> for full evidence tables.</p></div><div id="niceng206er2.s3.1.5"><h4>2.1.5. Summary of the qualitative evidence</h4><p>See <a href="#niceng206er2.appe">Appendix E</a> for full GRADE-CERQual tables.</p><div id="niceng206er2.s3.1.5.1"><h5>2.1.5.1. Narrative summary of review findings: people with ME/CFS, severity mixed or unclear</h5><div id="niceng206er2.s3.1.5.1.1"><h5>Facilitators</h5><div id="niceng206er2.s3.1.5.1.1.1"><h5>Review finding 1: Communication/relationship between HCP and patient</h5><p>The importance of building a relationship between the HCP and person with ME/CFS for providing support was highlighted. Not having ongoing contact with an individual HCP made the communication of information and provision of support difficult as it took time to reach agreement and understanding about symptoms and fluctuation of the condition. Some patients expressed the need for a dedicated individual who could provide continuity by accompanying them to consultations and to inform, advise, instruct and assist them at all stages of the care process.</p><p>HCPs who followed up with their patients regularly by email, over the phone or through home visits found that this communication benefited both the HCP and the patient. It allowed the HCP to gain feedback about their practice and the support it provides, as well as improving the HCP’s knowledge of ME/CFS by better understanding the course and fluctuation of the illness. Phone contact in particular was necessary and appropriate for specialists to provide support to people with severe ME/CFS who are house bound.</p><p>Explanation of quality assessment: moderate concerns over methodological limitations with serious concerns in one study (due to the lack of discussion of the potential impact of the researcher on the findings not being discussed and participant recruitment was unclear and risk of bias in the data analysis since type of analysis and details are not provided), moderate concerns in two studies (due to the lack of discussion of potential impact of role of the researcher on the findings in one study and concerns over data analysis in both studies due to a lack of sufficient detail and findings mostly supported by single quotes in one study and due to the analysis being done by a single researcher in the other study and concerns over participant recruitment in one study) and minor concerns in three studies (due to the role of the researcher and minor concerns over data analysis with findings mostly supported by single quotes) ; no concerns about coherence; moderate concerns of relevance due to indirectness of the study’s research aims (three studies), indirect population samples due to participants having been previously recruited in a different study (two studies), concerns over the relevance of one study (conducted in the Belgian healthcare setting) to the NHS setting, and due to time since publication of two studies conducted in 1995 and 2000 prior the development of new guidelines and diagnostic criteria; no concerns about adequacy. Overall assessment of confidence was moderate due to the methodological limitations and concerns over relevance identified.</p></div><div id="niceng206er2.s3.1.5.1.1.2"><h5>Review finding 2: Referral to specialist services</h5><p>People with ME/CFS found that they received the most information and support when they referred to specialist services. These specialist services provided information and an explanation of ME/CFS which had been previously difficult to find from GP services. Diagnosis is a key step in this process, with most people with ME/CFS finding that diagnosis was a key milestone which led to a positive experience in which they received useful advice and support from health care professionals with particular knowledge of ME/CFS.</p><p>This theme is supported by three studies with an overall assessment of high confidence. Explanation of quality assessment: very minor concerns over methodological limitations in two studies (due to the lack of discussion of role of the researcher) and no limitations in the other contributing study; no concerns about coherence; very minor concerns about relevance (only one study had very minor concerns due to a population who may have already received support and/or information prior to the study); no concerns about adequacy of information supporting the theme. Overall assessment of confidence was high as concerns over methodological limitations and relevance were very minor and did not lower the confidence rating.</p></div><div id="niceng206er2.s3.1.5.1.1.3"><h5>Review finding 3: Online training resource</h5><p>HCPs valued online training resources that improved their knowledge of ME/CFS and prepared them to provide information and build positive relationships with people with ME/CFS. One study found that an online training module that used video clips to show how a GP can work with a person with ME/CFS within a consultation setting was particularly valued by GPs.</p><p>Explanation of quality assessment: very minor concerns over methodological limitations in the contributing study (due to the lack of discussion of the role of the researcher); no concerns about coherence; no concerns about relevance; moderate concerns of adequacy due to the broadly-applicable theme being found only in a single study. Overall assessment of confidence was moderate due to concerns over adequacy and concerns over methodological limitations being too minor to lower the confidence rating.</p></div></div><div id="niceng206er2.s3.1.5.1.2"><h5>Barriers</h5><div id="niceng206er2.s3.1.5.1.2.1"><h5>Review finding 4: Limited specialist referral options</h5><p>While referral to specialist services was considered one of the best ways to support and provide information to people with ME/CFS, this is often limited by few referral options. In these cases, GPs were unsure when they should refer, where they should refer or what the specialist services could offer. Contact between GPs and specialist services could also be complicated by changes in specialist services such as redesigns or loss of contact with ME/CFS specialists who retire or relocate.</p><p>Explanation of quality assessment: very minor concerns over methodological limitations in the contributing study (due to the lack of discussion of the potential influence the researcher on the findings not being discussed); no concerns about coherence; no concerns about relevance; and moderate concerns of adequacy due to the broadly-applicable theme being found only in a single study. Overall assessment of confidence was moderate due to concerns over adequacy, as methodological limitations were too minor to further lower the confidence rating.</p></div><div id="niceng206er2.s3.1.5.1.2.2"><h5>Review finding 5: Limited knowledge of support groups</h5><p>Patients and carers highlighted the need for more signposting from their GP to information on local support groups, advice on benefits and referrals to the third sector, however most GPs and practice nurses do not have details of these contacts or are reluctant to make recommendations due to lack of knowledge of support groups. People with ME/CFS reported problems with gaining access to disability income, workplace accommodations or community-based resources because their GPs were unaware of such resources or because the physicians were unconvinced of the need for this type of support.</p><p>HCPs attitudes towards support groups varied, with most clinicians hesitant to recommend support groups because they had little knowledge of them and some believing that support groups could be harmful as well as helpful, depending on their approaches and the individual patient. Many saw this problem as not knowing how an individual would be affected by the methods of these external groups. For example, some patients could become devastated after being exposed to the worst scenarios of ME/CFS.</p><p>Explanation of quality assessment: minor concerns over methodological limitations with moderate limitations in one study (due to concerns over participant selection and data analysis (coding and analysis by a single researcher), but minor concerns over one study (due to the role of the researcher and lack of data richness with findings mostly supported by single quotes) and no concerns over the third contributing study; no concerns about coherence; minor concerns about relevance due to participants in one study being recruited from a previous study with a different research aim (evaluating a participant-designed rehabilitation program) and concerns due to its year of publication (2000) that preceded current guidelines and diagnostic criteria, but no concerns in the other two contributing studies; no concerns about adequacy. Overall assessment of confidence was moderate due to minor concerns over methodological limitations and relevance.</p></div><div id="niceng206er2.s3.1.5.1.2.3"><h5>Review finding 6: Lack of training</h5><p>There is a lack of training and education around ME/CFS available for HCPs, GPs in particular, and this contributes to a lack of knowledge among HCPs and therefore a lack of opportunity to educate people with ME/CFS who attend their services. ME/CFS specialists highlighted a training need in primary care, where GPs and practice nurses have varying degrees of understanding of ME/CFS and some question its legitimacy. This lack of training begins at university, where ME/CFS is largely absent from the medical curriculum.</p><p>Explanation of quality assessment: minor concerns over methodological limitations with minor concerns in both contributing studies (due to potential selection bias in one study due to recruitment of participants in response to an advertisement therefore risking over-representation of people who are more informed or have stronger views on ME/CFS and due to the lack of discussion of role of the researcher and lack of data richness with findings mostly supported by single quotes in the other study); no concerns about coherence; minor concerns about relevance due to indirect population of one study that included medical students rather than practicing healthcare professionals; minor concerns about adequacy due to the broadly-applicable theme being based on only two studies. Overall assessment of confidence was moderate due to minor concerns over methodological limitations, relevance and adequacy.</p></div><div id="niceng206er2.s3.1.5.1.2.4"><h5>Review finding 7: Reluctance of GPs to training</h5><p>Some GPs show reluctance to manage people with ME/CFS and in one study it was found that some practices were unwilling to engage in training on ME/CFS management. Reasons for lack of engagement include scepticism about ME/CFS and the complexity of managing the condition and working with patients and their families. Some GPs were seen to prefer referral to special services than to manage and support people with ME/CFS themselves, implying that the long-term commitment to manage this type of patient was too much for primary care professionals and that this was best left to secondary care specialists. Other reasons given for lack of engagement with ME/CFS included the small number of patients with the condition, pressures on time within a consultation and suggestion that ME/CFS was not a priority.</p><p>Explanation of quality assessment: very minor concerns over methodological limitations in the contributing study (due to the role of the researcher not being discussed; no concerns about coherence; no concerns about relevance; moderate concerns of adequacy due to the broadly-applicable theme being found only in a single study. Overall assessment of confidence was moderate due to concerns over adequacy and concerns over methodological limitations being too minor to further lower the confidence rating.</p></div><div id="niceng206er2.s3.1.5.1.2.5"><h5>Review finding 8: Consultation time constraints</h5><p>For GPs, the nature of clinic time and consultation length was a limiting factor for delivery of information and support. Both GPs and patients reported that a ten-minute consultation was not sufficient for the patient to communicate the complexity of their experience or for GPs to deliver information and manage the person with ME/CFS.</p><p>Explanation of quality assessment: very minor concerns over methodological limitations in the contributing study (due to the lack of discussion of the role of the researcher not being discussed); no concerns about coherence; no concerns about relevance; moderate concerns of adequacy due to the broadly-applicable theme being found only in a single study. Overall assessment of confidence was moderate due to concerns over adequacy and concerns over methodological limitations being too minor to further lower the confidence rating.</p></div><div id="niceng206er2.s3.1.5.1.2.6"><h5>Review finding 9: Cognitive and physical functioning of ME/CFS patients (particularly those with severe ME/CFS) and the impact on receiving information</h5><p>For people with severe ME/CFS, their ability to receive information and support from specialists was particularly affected as a result of reduced cognitive and physical functioning, with some people with severe ME/CFS unable to communicate effectively. This was seen to be extremely challenging for HCPs, particularly specialists, who did not know how to address this problem.</p><p>Explanation of quality assessment: minor concerns over methodological limitations in the contributing study (due to the role of the researcher and concerns over data analysis with some findings supported by single quotes); no concerns about coherence; no concerns about relevance; moderate concerns about adequacy due to the broadly-applicable theme being found only in a single study. Overall assessment of confidence was low due the methodological limitations and concerns over adequacy identified.</p></div><div id="niceng206er2.s3.1.5.1.2.7"><h5>Review finding 10: Information overload</h5><p>People with ME/CFS explained that they could sometimes suffer from an information overload from health care services, which could hamper their understanding of the condition. It was expressed that providing the right information at the right time was important to support people with ME/CFS.</p><p>Explanation of quality assessment: moderate concerns over methodological limitations in the contributing study (due to the role of the researcher, and concerns over data analysis with a lack of sufficient detail and findings mostly supported by single quotes; no concerns about coherence; moderate concerns about relevance due to setting (Belgian healthcare service); moderate concerns about adequacy to the broadly-applicable theme being briefly described in a single study. Overall assessment of confidence was very low due to moderate concerns over methodological limitations, relevance and adequacy.</p></div><div id="niceng206er2.s3.1.5.1.2.8"><h5>Review finding 11: Fear of negative reactions</h5><p>When patients’ views differed from the advice that HCPs gave them, the advice could be met with anger, particularly when HCPs advised to find psychological or psychiatric support. HCPs sometimes hesitated to discuss psychological factors around ME/CFS with patients due to concerns about patients’ possible reactions. This could even include reluctance to discuss concurrent psychological disorders that they detected. Because of this perception of people with ME/CFS as resistant to any suggestion of psychological disorder, HCPs often try to avoid stigmatising explanations; however, they also felt that avoiding labels and detailed discussions may leave the patient with a sense of ambiguity.</p><p>Explanation of quality assessment: moderate concerns over methodological limitations with moderate concerns in both contributing studies (due to role of the researcher, lack of detail on data analysis method one study, concerns over participant recruitment and data analysis as coding and analysis was done by a single researcher in the other study); no concerns about coherence; minor concerns about relevance due to concerns over one study (with main emerging findings being driven by the study’s original aims (to explore multiple perspectives on stigmatisation and legitimation of ME/CFS and its year of publication (2000) preceded present guidelines and diagnostic criteria) but no concerns over the other contributing study; minor concerns about adequacy due to broadly applicable theme being based on two studies. Overall assessment of confidence was low due to concerns over methodological limitations, relevance and adequacy.</p></div><div id="niceng206er2.s3.1.5.1.2.9"><h5>Review finding 12: Uncertainty and lack of confidence in information</h5><p>Uncertainties associated with ME/CFS mean that HCPs are often uncertain about the accuracy and reliability of the information they have, making them cautious and uneasy when explaining the condition. This was seen to be due to conflicting medical findings and opinions about ME/CFS, complicated by the lack of diagnostic tests or laboratory findings. Some HCPs felt that their credibility was at stake if their explanations were proven wrong in the future, resulting in physicians using a cautious and tentative tone when delivering an explanation of the illness to patients.</p><p>Explanation of quality assessment: moderate concerns over methodological limitations in the contributing study (due to concerns over participant recruitment and data analysis with coding and analysis by a single researcher); no concerns about coherence; moderate concerns about relevance due to main emerging findings being driven by the study’s original aims (to explore multiple perspectives on stigmatisation and legitimation of ME/CFS) and concerns over relevance arising from the fact that the finding emerged from a single study that due to its year of publication (2000) present guidelines and diagnostic criteria; moderate concerns about adequacy due to the broadly-applicable theme emerging from only one study. Overall assessment of confidence was very low due to moderate concerns over methodological limitations, relevance and adequacy.</p><p>See <a href="#niceng206er2.appe">Appendix E</a> for full GRADE-CERQual tables.</p></div></div></div><div id="niceng206er2.s3.1.5.2"><h5>2.1.5.2. Narrative summary of review findings: children and young people with ME/CFS, severity mixed or unclear</h5><div id="niceng206er2.s3.1.5.2.1"><h5>Facilitators</h5><div id="niceng206er2.s3.1.5.2.1.1"><h5>Review finding 1: Referral to specialist services</h5><p>When children and young people with ME/CFS and their parents received a referral to specialist services, they were given access to experts who provided them with information about the condition, guidance on management, sometimes an official diagnosis, and tailored patient-centred specialist medical support that they had not received previously. ME/CFS specialist services also provided confirmatory communication to schools that allowed mothers to legitimately take their child out of school, request funds for home schooling, or make other appropriate supportive adjustments in cooperation with teachers.</p><p>Explanation of quality assessment: minor concerns over methodological limitations in the contributing study (due to the unclear relationship between the researcher and participants and concerns over data richness with findings mostly supported by single quotes); no concerns about coherence; minor concerns about relevance due to indirect study aims (to understand the experiences of accessing and using specialist services) and lack of clarity around which intervention the findings relate to and the representativeness of the sample considering it consisted of feasibility RCT participants which may differ from eligible patients not recruited to a trial; moderate concerns about adequacy due to the broadly-applicable theme being found only in a single study. Overall assessment of confidence was low due to concerns over methodological limitations, relevance and adequacy.</p></div><div id="niceng206er2.s3.1.5.2.1.2"><h5>Review finding 2: Digital social support</h5><p>Children and young people with ME/CFS expressed a preference for online information and social support. Accessible and appealing social support sites included health forums as well as non-health-related sites such as Facebook, Instagram, blogs and YouTube. The speed at which they could access these resources at any time provided a great sense of support and reduced feelings of loneliness and isolation. Specific features of such support sites that children and young people found appealing were the shared language of likes and comments to give a connection to others. This online social system was seen as less demanding and more flexible than offline relationships in the context of a disabling and fluctuating illness.</p><p>Explanation of quality assessment: minor concern over methodological limitations in the contributing study (due to role of the researcher not being discussed and lack of details on the data analysis); no concerns about coherence; minor concerns about relevance due to the study not including severely affected adolescents; and moderate concerns about adequacy due to the broadly-applicable theme being found only in a single study. Overall assessment of confidence was low due to concerns over methodological limitations, relevance and adequacy.</p></div></div><div id="niceng206er2.s3.1.5.2.2"><h5>Barrier</h5><div id="niceng206er2.s3.1.5.2.2.1"><h5>Review finding 3: Unhelpful or unrelatable NHS information resources</h5><p>Children and young people with ME/CFS found that NHS websites providing information on ME/CFS were not user-friendly because they used medical terminology, lacked depth and were not up to date. By comparison, this population felt that patient- and peer-led websites were more helpful and reliable, using terms and phrases that were more accessible and appealing and offering greater depth. There was a preference for the story-telling approach used by patient- and peer-led resources and the videos used by these sites.</p><p>Explanation of quality assessment: minor concerns over methodological limitations in the contributing study (due to lack of discussion of the role of the researcher and lack of details on the data analysis); no concerns about coherence; minor concerns about relevance due to the study not including severely affected adolescents; moderate concerns about adequacy due to the broadly-applicable theme being found only in a single study. Overall assessment of confidence was low due to concerns over methodological limitations, relevance and adequacy.</p></div></div></div></div><div id="niceng206er2.s3.1.6"><h4>2.1.6. Economic evidence</h4><p>The committee agreed that health economic studies would not be relevant to this review question, and so were not sought.</p></div></div></div><div id="niceng206er2.s4"><h2 id="_niceng206er2_s4_">3. The committee’s discussion and interpretation of the evidence</h2><p>The committee discussion of the review on information, education and support for health and social care professionals caring for people with ME/CFS and the review on barriers and facilitators to providing information to people with ME/CFS and the expert testimony on information, education and support for health and social care professionals caring for people with ME/CFS (see <a href="/books/NBK589852/bin/niceng206er2_bm3.pdf">Appendix 3: Expert testimonies</a>) are included here.</p><p>The committee discussion was also informed by the findings from the evidence reviews on evidence report C: access to care, evidence report A: information for people with ME/CFS, evidence report D: diagnosis and evidence report I: multidisciplinary teams. Where relevant these sources are noted.</p><div id="niceng206er2.s4.1"><h3>3.1. The quality of the evidence</h3><div id="niceng206er2.s4.1.1"><h4>Information, education and support for health and social care professionals caring for people with ME/CFS</h4><p>Sixteen qualitative studies were included in the review. The majority of the evidence was based on health care professionals (HCPs) caring for adults with ME/CFS and adults with ME/CFS. One study included adolescents who had recovered from ME/CFS and one study included health care professionals caring for children and young people with ME/CFS. One study included ‘significant others’ of people with ME/CFS. No evidence was identified for social care professionals caring for people with ME/CFS.</p><p>Confidence in the review findings ranged from high to moderate. Main reasons for downgrading were methodological limitations and relevance. The most common methodological limitations identified were insufficiently rigorous data analyses, with findings being supported by single quotes and limited explanations and the relationships between the researchers and participants not being adequately reported.</p><p>Most findings were from studies that had different research aims to the aim of this review. Several findings were directly applicable and despite minor concerns regarding their relevance reducing the committee’s confidence in those findings, the committee agreed they contributed useful information that could support decision making. There were concerns regarding the relevance of findings from some studies on subgroups of the review population, such as women with ME/CFS and those with suicidal ideation. One study was based on medical students rather than practicing health care professionals caring for people with ME/CFS. The committee considered that although these views may not be directly applicable to practicing health care professionals, they were valuable to build a more complete picture of the information, education and support needs of health care professionals working with people with ME/CFS.</p><p>Some findings, particularly those identified for children and young people were based on evidence from a small number of studies, which meant that coherence was less clear and there were some concerns about the adequacy of data.</p><p>The committee agreed evidence from the adult population reflected their knowledge and experience about children and young people and could be used to support their decision making for children and young people.</p></div><div id="niceng206er2.s4.1.2"><h4>Barriers and facilitators to providing information to people with ME/CFS</h4><p>Fifteen qualitative studies were included in the review. The majority of the evidence was based on health care professionals caring for adults with ME/CFS and adults with ME/CFS.</p><p>Two studies were based on children and young people with ME/CFS. Ten of the twelve studies on patients/carers involved people with a mixed or unclear severity of ME/CFS, while two studies excluded people with severe ME/CFS.</p><p>Confidence in the review findings ranged from high to very low. Main reasons for downgrading were methodological limitations, relevance and adequacy. The most common methodological limitations identified were insufficient reporting of methods of data analysis, insufficient data presented to support findings, for example single quotes only and the relationships between the researchers and participants not being adequately considered or reported.</p><p>There were concerns regarding the relevance of findings from studies that had different research aims to the aim of this review, however findings were deemed to be directly applicable, and the committee agreed they contributed useful information that could support decision making. There were concerns regarding the relevance of findings from the studies that excluded people with severe ME/CFS, although the committee reflected that none of the studies were likely to have included people with severe or very severe ME/CFS due to difficulties conducting research in this group. One study was based on medical students rather than practicing health care professionals and one study was based on the Belgian healthcare setting. This evidence may not be directly applicable to practicing health care professionals in the NHS, but they were valuable to build a more complete picture of the information, education and support needs of health care professionals working with people with ME/CFS.</p><p>Six of the studies were published over a decade ago and the committee discussed their relevance to current practice. The committee agreed that many of the issues identified by health and social care professionals and people with ME/CFS then are the same today.</p><p>The majority of the findings were based on single studies; online training resources, limited specialist referral, reluctance of GPs to training, consultation time constraints, capacity of ME/CFS patients, information overload, and uncertainty and lack of confidence in the information. Coherence was less clear in these findings with concerns about the adequacy of data supporting them.</p><p>The committee placed greater weight on high and moderate confidence findings than low and very low confidence findings during discussion of the evidence. However, they acknowledged that some lower confidence findings reflected their own experience, and some were also identified in other qualitative reviews across the guideline. For example, the length of consultations does not allow for effective communication and support was rated ‘low’, but in the review of barriers and facilitators to care for people with ME/CFS (see evidence report C: access to care) time limited consultations were identified as a barrier to the provision of appropriate care, and there was moderate confidence in this finding.</p></div></div><div id="niceng206er2.s4.2"><h3>3.2. Findings identified in the evidence syntheses</h3><p>The review questions outlined at the start of this report are an exploration of the needs of health and social care professionals for information, education and support and a separate question exploring in more detail how this can be implemented and achieved. It is clear from the reviews that many studies addressed both perspectives and 10 studies are included in both reviews. <a class="figpopup" href="/books/NBK589852/figure/niceng206er2.fig4/?report=objectonly" target="object" rid-figpopup="figniceng206er2fig4" rid-ob="figobniceng206er2fig4">Figure 4</a> illustrates the overlapping themes in the 2 reviews.</p><p>To avoid duplication the committee discussion of the findings from both reviews are reported under the following headings: Information and education needs (knowledge about ME/CFS, understanding living with ME/CFS), support from specialist services, and provision and delivery of training. The needs are described and then the barriers and facilitators highlighted. Themes identified for children and young people broadly mirrored those identified for adults. Findings unique to children and young people are highlighted.</p><p>The committee considered that the findings identified in these reviews were consistent with their experience and the expert testimony.</p><div id="niceng206er2.s4.2.1"><h4>Information and education needs</h4><div id="niceng206er2.s4.2.1.1"><h5>Knowledge about ME/CFS</h5><p>Lack of knowledge and beliefs about ME/CFS and the need for education and training to address these emerged as an important theme in both reviews. In the information and support review evidence suggested that HCPs have a lack of knowledge and belief in ME/CFS. This results in a lack of confidence and ability to diagnose and manage people with ME/CFS, leading to delays in diagnosis and referral and mismanagement of patients. This was expressed by both HCPs and people with ME/CFS. Lack of knowledge, understanding and belief in ME/CFS is a theme echoed in the evidence identified on children and young people and in evidence report C: access to care and evidence report A: information for people with ME/CFS.</p><p>In the barriers and facilitators review lack of training and education across healthcare practitioners in how to manage ME/CFS was identified as a barrier to HCPs providing information and support to people with ME/CFS. The improved education of HCPs about ME/CFS and an increased presence of training about the condition in the medical curriculum was identified as key to address the lack of understanding and belief about ME/CFS. This theme was echoed in the evidence identified on children and young people and in evidence report C: access to care and evidence report A: information for people with ME/CFS.</p><p>These findings were reflected by Dr Muirhead in her expert testimony. She described experiencing a significant change in her understanding and beliefs about ME/CFS after becoming ill with ME/CFS. Her experience has been that the information, education and support provided by medical bodies is mostly outdated, misleading and not in line with patient experience. In particular, she expressed concerns that ME/CFS training and education is not mandatory, is merged with medically unexplained symptoms and is based on theories of deconditioning and fear avoidance of exercise. This lack of and misinformation leads to incongruity between an HCP’s understanding of the illness and the experience of patients. This disparity can compromise the relationship between people with ME/CFS and the healthcare professionals they meet. In the worst case poor training and poor information may cause harm.</p><p>The committee considered the qualitative evidence of the lack of knowledge and awareness of ME/CFS among HCPs and the need for more and better training, alongside the expert testimony. The experiences recounted by Dr Muirhead resonated with several members of the committee, particularly the lay members, many of whom had shared similar experiences. The committee discussed the potential harms of the lack of awareness, knowledge and the misunderstanding among HCPs to the care of people with ME/CFS and agreed that people with ME/CFS should have their care and treatment delivered by or as a minimum overseen by health and social care practitioners who have training and experience in ME/CFS relevant to their role. They agreed anyone delivering care to people with ME/CFS should have access to training and maintain continuous professional development in ME/CFS. The committee discussed that evidence for social care professionals is lacking but this was equally as important to consider. The committee agreed the training recommendations should apply to social care professionals but recognised this might be different in some of the content from the training for HCPs. To reinforce the importance of training and education the committee made a recommendation directed at service providers that access to training for people with ME/CFS should be provided for all staff that have contact with or deliver care to people with ME/CFS and should include information on what ME/CFS, including diagnosis, management and monitoring, and the experiences of people with ME/CFS.</p><div id="niceng206er2.s4.2.1.1.1"><h5>Suspecting and diagnosing ME/CFS</h5><p>In the information, education and support review, evidence suggested there the lack of a confirmed consensus on the diagnostic criteria for ME/CFS meant that there was confusion among HCPs in when to suspect or diagnose ME/CFS. HCPs expressed the need for agreed case definitions for both diagnosis and recovery. The lack of agreed tests and measurements for ME/CFS symptoms mean that HCPs are reluctant to make a diagnosis based on limited clinical signs and struggle to assess recovery. Similarly, HCPs caring for children and young people find difficulty in reaching a diagnosis of ME/CFS, with uncertainty around diagnostic criteria and appropriate labels.</p><p>The committee considered these findings alongside the review on diagnostic criteria (see evidence report D: diagnosis). The committee noted that diagnostic criteria vary between centres and sometimes a hybrid of different criteria and clinical judgement used. The committee discussed different symptom measurement scales for diagnosis and recovery, including the Checklist Individual Strength and the DePaul Symptom Questionnaire, but there was little consensus on the value of these measures. Furthermore, no evidence was identified on the accuracy of these scales for predicting diagnosis in the review of predictive tests/signs/symptoms (see evidence report E: strategies before diagnosis). The committee acknowledged there is uncertainty around how to identify and diagnose someone with ME/CFS and noted that in their experience this can result in people being undiagnosed and seeing many doctors and specialities until they meet a clinician with enough knowledge to recognise and diagnose ME/CFS. The criteria for suspecting and diagnosing ME/CFS is discussed in the report on diagnosis. The committee agreed that with recommendations in this guideline on suspecting ME/CFS and with training GPs should have the confidence to consider a ME/CFS diagnosis and refer to a ME/CFS specialist for confirmation of the diagnosis (see evidence report I: multidisciplinary care for discussion on referral to specialist ME/CFS services).</p></div><div id="niceng206er2.s4.2.1.1.2"><h5>Management of ME/CFS</h5><p>In the information and support review evidence suggested there is need for a clearer clinical management pathway for ME/CFS. The committee considered this finding alongside the lack of evidence of clinical effectiveness for many of the interventions reviewed in this guideline. The committee discussed the frustration and sometimes anxiety that could be experienced by health and social care professionals when they are unable to cure or even improve the symptoms of people with ME/CFS.</p><p>The committee acknowledged the frustration of non-specialists in ME/CFS not knowing what to do or where to get support but also the helplessness of patients not receiving access to the expertise and management they require. The committee agreed that training should include education on the lack of evidence of any curative interventions, but also focus on ways that health and social care professionals can provide care, including advice on symptom control, managing relapse, reviewing and monitoring, access to services and tailoring access according to the person’s needs. The committee considered the guideline recommendations on management of ME/CFS and managing relapse, including specific recommendations for people with severe or very severe ME/CFS and children and young people, should increase knowledge and confidence regarding management.</p><p>The committee discussed providing guidance on specific areas to include in training programmes. They recognised that the content of training programmes should be specific to the role of the practitioner, for example it is appropriate a GP should have training on how to provisionally diagnose ME/CFS but this would not be relevant to a social worker. They acknowledged that if interpreted rigidly providing a list of areas for training can be counterproductive with only the topics listed included. Taking this into account the committee decided a list would not be useful in this context but recommended that training should be relevant to the professional’s role so they are able to care for people in accordance with this guideline. The committee were aware of the availability of out of date training materials and emphasised that training should reflect current knowledge in ME/CFS, and this should include understanding what ME/CFS is.</p></div><div id="niceng206er2.s4.2.1.1.3"><h5>Providing information for people with ME/CFS</h5><p>Throughout the reviews in the guideline, it is clear that HCPs lack knowledge about ME/CFS (in evidence report C: access to care and evidence report A: information for people with ME/CFS.) and this is followed by a lack of confidence in providing resources for people with ME/CFS.</p><p>In the barriers and facilitators review evidence suggested that HCPs are often unable to recommend support groups or give advice on benefits because they have little knowledge or information about them or relevant contacts. The committee agreed that this was their experience and considered this in relation to the benefits of such information and advice for people with ME/CFS and their families and carers identified in other reviews. The committee noted there are many groups that offer information for people with ME/CFS and some that are unmoderated and suggest advice that is controversial and can be unhelpful.</p><p>In both reviews evidence suggested that HCPs need trustworthy good quality resources that can be used during consultations to educate and reassure patients when diagnosed with ME/CFS. HCPs from specialist services reported using information resources produced by patient groups such as Action for ME or the ME Association when giving advice to people diagnosed with ME/CFS. The committee agreed that training for HCPs should include information on accessing support services (for example, patient support groups) so they can pass this information on to patients.</p><p>This committee noted this was particularly pertinent to children and young people with ME/CFS and the difficulties they have in accessing relevant and accessible information. In the barriers and facilitators review evidence suggested that NHS resources lack the accessibility and relatability provided by patient- and peer-led websites in terms of language and narrative approach used. Evidence also suggested that digital social support websites such as health forums and other social media sites provide quick, simple and undemanding access to social support, reducing isolation. These findings were also identified in the review of information, education and support needs of people with ME/CFS and discussed further in that report and support the recommendation to consider using different formats such as digital media, including social media where appropriate when providing information for children and young people with ME/CFS.</p><p>In the barriers and facilitators review evidence suggested that specialist services were seen as the best provider of information and support. This was supported by the finding that referral to specialist services provided children and young people with ME/CFS and their parents with information and support, as well as a letter allowing educational adjustments.</p></div></div></div><div id="niceng206er2.s4.2.2"><h4>Understanding about living with ME/CFS</h4><div id="niceng206er2.s4.2.2.1"><h5>HCP –patient relationship</h5><p>In the barriers and facilitators review evidence suggested that building a relationship between the HCP and person with ME/CFS allows better provision of information and support and frequent contact improves understanding of ME/CFS for both parties. The committee noted that good and ongoing HCP-patient relationships were highlighted as a support need in evidence report A: information for people with ME/CFS, as a facilitator in evidence report C: access to care and as important to a positive experience of several interventions in the review of experiences of interventions for ME/CFS (see evidence report G: non pharmacological management).</p><p>The committee considered this theme was in keeping with existing models of good clinical communication and therapeutic relationships and were mindful of these when making recommendations on principles of care emphasising the importance of taking the time to build supportive, trusting and empathetic relationships. Specifically, the committee cross referred to the principles on communication, information giving and shared decision making in the NICE guidelines on patient experience in adult NHS services and people’s experience in adult social care services. Existing models of good clinical communication and therapeutic relationships also guided the development of recommendations regarding the content, approach and delivery of management interventions.</p><p>In the barriers and facilitators review evidence suggested that HCPs can be hesitant to provide information and in particular discuss psychological factors around ME/CFS due to concerns about patients’ possible negative reactions. The committee discussed the sensitivities around the topic of psychological symptoms and considered evidence from other reviews that people may have experienced disbelief in the past or the implication that their condition is, ‘all in their head’. It was also acknowledged that although there are several theories, the definitive causation of ME/CFS is still unknown. The committee agreed that a holistic approach which takes into account the person’s needs is most appropriate to assessment, provision of information and management, and the recommendations throughout the guideline reflect this.</p><p>The committee discussed the difference between patients’ expectations and their experience with HCPs and the problems this causes. The committee agreed that training should take a holistic view and HCPs should be encouraged to listen to patients and the experience of their symptoms, acknowledging to the person with ME/CFS the reality and potential impact of ME/CFS and their symptoms.</p><p>In the information, education and support review evidence suggested that experience of working with people with ME/CFS enabled HCPs to recognise the condition and develop confidence in their diagnostic skills. Contact with people with ME/CFS outside of the clinical setting improved HCPs understanding of the lived experience of the condition and raised awareness about the challenges that some people with ME/CFS face. Some of the committee members knew of people with ME/CFS who are reluctant to engage with health and social services and have stopped contact after they have been unable to get the help or support they need. The committee noted that GPs are also unlikely to have had significant experience with people with the most severe symptoms or to have seen people when they are experiencing severe symptoms as these people are often unable to attend appointments (also see Evidence report C: access to care). The committee considered it important that training includes education on the impact of ME/CFS on people living with the condition as well as their families and carers and tailoring access according to the person’s needs (see evidence report C: access to care).</p></div><div id="niceng206er2.s4.2.2.2"><h5>Giving information to people with ME/CFS</h5><p>In the barriers and facilitators review evidence suggested that as a result of reduced physical and cognitive functioning people with ME/CFS can have difficulties in absorbing information from HCPs and can sometimes experience an overload of information which can negatively affect their understanding of the condition.</p><p>The committee were familiar with the concept of information overload from their experience and the need for adaptions when delivering information to people with ME/CFS. Time constraints in primary care were also identified as a barrier to diagnosis and care, with evidence suggesting that due to the complexity of ME/CFS and its symptoms, HCPs often find that the short length of consultations do not allow for effective communication and support.</p><p>The committee considered that these findings supported the recommendations about educating HCPs about understanding ME/CFS and also the principles of care outlined in the recommendations. In particular checking the person’s understanding of each consultation, offering a summary as appropriate to the person’s needs, adapting the timing, length and frequency, of appointments and treatments and ensuring information is available in a variety of formats (see evidence report C: access to care).</p></div></div><div id="niceng206er2.s4.2.3"><h4>Support from specialist services</h4><p>Support from specialist services was identified from two perspectives in both reviews: access to services for people with ME/CFS and access to advice. The committee noted the need for access to specialist support was identified by both HCPs and people with ME/CFS and this theme was echoed throughout several of the guideline reviews.</p><div id="niceng206er2.s4.2.3.1"><h5>Access to services</h5><p>In the information and support review evidence suggested that there is need for a clearer clinical management pathway for ME/CFS. HCPs are often unsure of where to refer patients once a diagnosis has been reached. ME/CFS specialists also expressed concern at the lack of referrals to their services made by GPs.</p><p>Uncertainty around appropriateness and effectiveness of treatment pathways was also shown by the evidence on HCPs caring for children and young people. The committee noted that the concern expressed by HCPs regarding the lack of a clear management pathway was similar to the concern expressed by people with ME/CFS. In the information, education and support review evidence suggested that GPs found it helpful to have support from ME/CFS specialists, but that there was limited availability of specialist services, or they were unaware of them. Specialist HCPs on the other hand expressed frustration that GPs in their region often did not refer patients to their services and emphasised that there was a need for these services to be more ‘visible’ and provide training and education for other HCPs. People with ME/CFS also showed concern about long waiting times for specialist services and suggested that increased communication between primary and secondary care might allow better management by GPs.</p><p>Based on the qualitative evidence on the availability of specialist services and lack of HCP knowledge of them, the committee noted that information and training for GPs should include advice on when to refer a patient to specialist ME/CFS services and how to access them. The committee noted there is variation and inequity in access to specialist ME/CFS services in England and Wales with paediatric services being particularly limited.</p></div><div id="niceng206er2.s4.2.3.2"><h5>Access to advice</h5><p>In the information and support review GPs suggested that ME/CFS specialist services should support primary care by providing them with information and training. Medical students reported that there is little or no formal training on ME/CFS in the medical curriculum and that their knowledge often comes from media.</p><p>The committee discussed who should provide training for health and social care professionals and the appropriate level of specialist involvement. It was suggested that primary and secondary care services should work together to develop a training program and that training for generalists/GPs should be provided or at least supported by specialist services. The committee also reflected that there was a need for standardised specialist training to ensure that there is consistency across services. Based on the expert testimony by Dr Muirhead and the experience of the committee about outdated training materials, it was considered the content and training methods should be evidence based and that trainers should have proven skills, knowledge and experience in the particular area of training.</p></div></div><div id="niceng206er2.s4.2.4"><h4>Delivery of training</h4><p>In the barriers and facilitator review evidence suggested that some GPs are reluctant to take on the management of people with ME/CFS, preferring to refer to secondary care specialists, and do not always engage with ME/CFS training when offered. The committee discussed why this might be the case and considered that if GPs where underconfident about their knowledge about ME/CFS and their skills to manage people’s symptoms then it would be understandable they would refer to secondary care specialists ensuring the best care for their patients. The committee reflected that the training recommendations should help address the lack of knowledge and apprehension that GPs have about managing ME/CFS. The reluctance to engage training was seen as multifactorial but as mentioned above GPs have limited time and the committee agreed that making training resources accessible to GPs was critical in ensuring their uptake. The committee agreed that this finding could be applied to all health and social care professionals and that knowledge and training about ME/CFS was limited.</p><p>As is the case with any training programmes the committee agreed it was important to ensure they are of high quality and agreed that training programmes should have evidence based content, developed and supported by specialist services with input from people with ME/CFS and run by trainers who are experienced and knowledgeable about ME/CFS. It was suggested that ideally assessment should be part of the training. The committee recognised it is the responsibility of professional bodies to develop training requirements for their members and the inclusion of ME/CFS in undergraduate and postgraduate curricula.</p><p>In support of this, in the barriers and facilitators review HCPs valued online training resources that showed how to work with people with ME/CFS in a consultation setting, with several GPs finding video resources particularly useful for this. The committee noted the preference identified in the evidence for online training and noted that training can be delivered through online courses such as E-learning and online videos.</p></div></div><div id="niceng206er2.s4.3"><h3>3.3. Cost effectiveness and resource use</h3><p>Cost effectiveness evidence was not sought as both reviews questions related to qualitative evidence.</p><p>The committee considered that the review’s findings demonstrated the need for better training and education for health care professionals about ME/CFS. This was also supported by qualitative evidence from other guideline chapters including those covering barriers to diagnosis and barriers to care. The committee recommended that new training programmes be developed that are based on the latest evidence and patient experience. The cost effectiveness of this training is uncertain but insufficient training of health care professionals has clearly led to delayed diagnosis and poor quality of life for many patients. Any initial costs for training should save downstream costs that result from delayed diagnosis and inappropriate management of symptoms.</p><p>Another theme that was the need for specialist services as a source of information and support for health care professionals but also the need for a clear clinical management pathway. This was echoed in the reviews of barriers to diagnosis and care and in the review of patient information needs. The committee recommended that a specialist multidisciplinary team to confirm diagnosis, establish a treatment plan and provide support for primary care services. The cost effectiveness of a specialist multidisciplinary team is uncertain, but the uneven provision of specialist services has been identified by patients and staff as a key contributor to delayed diagnosis and poor patient outcomes.</p></div><div id="niceng206er2.s4.4"><h3>3.4. Other factors the committee took into account</h3><div id="niceng206er2.s4.4.1"><h4>Safeguarding</h4><p>The committee discussed how a lack of knowledge and understanding about ME/CFS has led to people not being believed and this has had negative consequences particularly for children and young people, and their families. The committee agreed it was very important to make recommendations raising awareness on this topic.</p><p>The committee recognised that safeguarding is an issue that has been part of the ME/CFS landscape in a way that is different to other chronic illnesses and disabilities because people with ME/CFS commonly report that they are not believed. Some of the committee members were aware of families of children with ME/CFS not being believed for years and the persistent feeling of a low level of threat of accusation of making their child’s illness up. This has led to parents having to explain repeatedly to health and social care professionals why their children cannot engage in activities or have reduced attendance at school. This has resulted in mistrust and acrimony between people with ME/CFS, their families and health and social care services. This mistrust and breakdown in relationships between people with ME/CFS, their families and health and social care professionals causes long-term damage with a reluctance for people with ME/CFS to engage with health and social care services. The committee made recommendations to raise awareness of the impact prejudice and not being believed can have on an individual and their families and their subsequent fear of engagement in health and social care involvement.</p><p>The committee members noted that while the issue of safeguarding is not solely about children and young people most of the concerns the committee were aware of related to children and young people with ME/CFS.</p><p>There has been considerable controversy over the use of child protection procedures and care proceedings in children and young people with suspected or diagnosed ME/CFS. The committee acknowledged the devastating emotional and physical impact this stressful experience can have on children, young people and their families. The committee noted that once child protection concerns are raised the process is very difficult to reverse or stop even when it has been concluded that there is no harm.</p><p>The committee agreed it was important that recommendations address some of the common misconceptions that may have led to child protection concerns, and to provide guidance on this topic.</p><p>One of the key themes identified throughout the evidence reviews (see evidence review A: information and support for people with ME/CFS) and the additional evidence (see <a href="/books/NBK589852/bin/niceng206er2_bm1.pdf">Appendix 1</a>, <a href="/books/NBK589852/bin/niceng206er2_bm2.pdf">2</a> and <a href="/books/NBK589852/bin/niceng206er2_bm3.pdf">3</a>) provided in this guideline is the lack of understanding, education and knowledge that health and social care practitioners have about ME/CFS. This is turn leads to a reluctance to diagnose ME/CFS and delays in diagnosis (see evidence review D: diagnosis).</p><p>The committee noted these factors have also been highlighted by the ME/CFS community as contributing to safeguarding concerns being raised. Committee members knew of examples where a lack of understanding about ME/CFS, its fluctuating nature, its range of possible symptoms and severity had led to inappropriate safeguarding concerns being raised in families.</p><p>In addition to the recommendations in the guideline on diagnosis and education for health and social care practitioners, the committee made a consensus recommendation to dispel some of the common misconceptions that have been held about when to suspect a potential safeguarding issue. The important ones the committee identified are discussed below.</p><div id="niceng206er2.s4.4.1.1"><h5>Physical symptoms that may not fit into a commonly recognised illness pattern</h5><p>The committee agreed that the wide range of symptoms of ME/CFS and their interaction is complex and cannot be explained by current knowledge of organic pathology. The presentation of ME/CFS is diverse, often with multiple symptoms which could – in the absence of other typical features of ME/CFS - give grounds for concern. Where core features of ME/CFS are present other symptoms are a common occurrence as part of the illness. The committee noted that many of the symptoms of ME/CFS are general and are evident in a wide range of conditions. For example, the profound fatigue after exertion is a feature of ME/CFS. However, it is easily confused with fatigue in mental health conditions such as depression or in other diseases such as MS, cardiac failure and muscle disorders. This complexity and lack of understanding about the core features of ME/CFS, and the variety of symptoms and severity that can accompany them can result in health care professionals raising concerns.</p></div><div id="niceng206er2.s4.4.1.2"><h5>More than one child or family member with ME/CFS</h5><p>The committee noted that the aetiology of ME/CFS is not clear and the role of genetics, environmental factors and infections remain unknown. An assumption that the possibility of more than one person in a household is unlikely is not substantiated.</p></div><div id="niceng206er2.s4.4.1.3"><h5>Exercising choice over treatment by the child, young person or parent/carer</h5><p>The children and young people report found that young people and their parents often knew more about ME/CFS than the health and social care professional they met, and this could result in them disagreeing with the professionals about the advice and treatments they were offered. The committee were aware of safeguarding concerns being raised when young people with ME/CFS or their parents/carers had refused part of a management plan (because parents/carers considered the management plan not to be in the child’s best interest). The right for the person to make choices about their treatment and not to be penalised is emphasised throughout the guideline (see principles of care) and the committee agreed that it should be clear that disagreeing with any part of a management plan is not in itself an indicator of abuse.</p></div><div id="niceng206er2.s4.4.1.4"><h5>Parents/carers communicating for the child or young person and reduced or non-attendance at school/college</h5><p>The committee were aware that parents/carers communicating for the child or young person and reduced or non-attendance at school have been red flags for child protection concerns.</p><div id="niceng206er2.s4.4.1.4.1"><h5>Communication</h5><p>The committee discussed how a lack of understanding and knowledge about how ME/CFS symptoms (for example, fatigue, post exertional symptom exacerbation (PESE), cognitive difficulties) can affect the ability to communicate and can result in these misconceptions. The committee gave examples of their own experience as parents: they want to protect their children from worsening their symptoms, which they know is more likely to happen in a situation where the child is already anxious or stressed and they can see their child is struggling to communicate. This is particularly challenging in cases of people with severe or very severe ME/CFS, where communication is difficult, and parents or carers inevitably communicate with health care professionals on behalf of the person with ME/CFS.</p><p>In addition, the committee noted that in children or young people that have had previous negative experiences with health and social care workers it is not surprising that they want their parents or carers to advocate and communicate for them. This can be interpreted as reinforcing misconceptions that the parent does not let their child talk. The committee discussed that this could result in parents finding it difficult to advocate for their child without being seen as overprotective or pushy. This results in the withdrawal of seeking support and can have a long term impact on both care and education.</p></div><div id="niceng206er2.s4.4.1.4.2"><h5>School attendance</h5><p>The committee noted that the key to understanding school attendance in a child with ME/CFS is proportionality. Any interpretation of the appropriateness of help with communication and to school attendance must be within the context of the rest of the child or young person’s life. The committee have experience where there is the perception that if a child is in school then “everything is okay”. However, being physically there and appearing well does not mean the child or young person does not struggle to maintain any other activity outside of school. Children may struggle to maintain attendance at school but then at home are so exhausted that they are unable to maintain any activity of simple play or interaction. Their post exertional fatigue is exhibited at home.</p><p>The committee discussed that the parent or carer experience could be very different from that of the school. The nature of PESE means people are rarely seen at their worst which can be confusing for people that have little understanding about ME/CFS and may result in miscommunication and a perception that the parent or child is exaggerating. This may result in parents making the decision to reduce or adjust school attendance in the best interests of their child which can raise concerns. Reduced or non-attendance is often perceived to be school avoidance (but is usually a result of being unable to attend, either because they are too unwell or the school have not been supportive or proactive in finding the best ways to manage education).</p></div></div></div><div id="niceng206er2.s4.4.2"><h4>Safeguarding assessments and assessments under the Mental Health Act or Mental Capacity Act</h4><p>The committee agreed to underpin these recommendations on safeguarding by recommending that health and social care practitioners that have training and experience in ME/CFS should be directly involved in safeguarding assessments on people diagnosed with or suspected of having ME/CFS. It is recognised that there are emergency situations where an urgent assessment is needed to prevent harm and in these circumstances health and social care practitioners that have training and experience in ME/CFS should be involved as soon as possible.</p><p>The committee hoped that recommending that health and social care practitioners that have training and experience in ME/CFS should be directly involved in safeguarding assessments would help reduce some of inappropriate safeguarding concerns that are raised. The involvement of a person who has received training in ME/CFS in the assessment of safeguarding concerns is important because safeguarding issues are complex and the features of ME/CFS can easily raise false safeguarding concerns. The committee noted that fabricated illness is very rare and a diagnosis that should only be arrived at with great caution.</p><p>The committee recognised it was important that children and young people at risk of maltreatment and abuse should be identified and receive the help and support they need. The committee made a consensus recommendation to raise awareness that recognising and responding to possible child maltreatment, abuse and neglect is complex and should be considered in the same way for children and young people with ME/CFS as with any child with a chronic illness or disability. The NICE guidelines on Child maltreatment: when to suspect maltreatment in under 18s and Child abuse and neglect are referenced.</p><p>The committee were aware of people with ME/CFS that had been subject to Mental Health Act or Mental Capacity Act assessments and noted that the appropriateness of the assessments and outcomes has been challenged. The committee discussed that this can be a result of a lack of understanding about ME/CFS and agreed to make a consensus recommendation similar to the one on safeguarding assessments. Assessments should involve health and social care professionals who have training and experience in ME/CFS and in an emergency situation health and social care professionals who have training and experience in ME/CFS should be contacted in the next 24 hours.</p></div><div id="niceng206er2.s4.4.3"><h4>People with severe or very severe ME/CFS</h4><p>The committee agreed it was important to recognise that health and social care professionals with little understanding of ME/CFS symptoms and their severity can misinterpret the needs of people with severe or very severe ME/CFS as a matter for concern, for example, the need for a low stimulus room as enforced social isolation, lack of self-care as neglect, inability to digest food as an eating disorder. On this basis the committee made a consensus recommendation that people with severe or very severe ME/CFS are at risk of their symptoms being confused with signs of abuse or neglect.</p></div><div id="niceng206er2.s4.4.4"><h4>Pregnancy, childbirth and post-natal care</h4><p>The committee discussed the lack of research including pregnant women, childbirth and post-natal care in all areas of the guideline. This committee noted there is a general lack of information available about how to support women with ME/CFS and their partners during pregnancy through to the post-natal period. The committee agreed that women with ME/CFS can have very different experiences of pregnancy and childbirth on their symptoms. The committee agreed they did not have the expertise to make any specific recommendations but considered that the focus in the guideline on personalised care and regular review of care should prompt the necessary planning required for pregnant women through to and including the post-natal period.</p><p>To raise awareness of this gap in the evidence pregnant women and women in the post-natal period have been specified in the population for the self-management strategies, sleep management strategies, and dietary strategies research recommendations.</p></div></div></div><div id="appendixesappgroup1"><h2 id="_appendixesappgroup1_">Appendices</h2><div id="niceng206er2.appa"><h3>Appendix A. Review protocols</h3><p id="niceng206er2.appa.et1"><a href="/books/NBK589852/bin/niceng206er2-appa-et1.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Review protocol for Information, education and support for health and social care professionals</a><span class="small"> (PDF, 194K)</span></p><p id="niceng206er2.appa.et2"><a href="/books/NBK589852/bin/niceng206er2-appa-et2.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Review protocol for Barriers and facilitators to providing information, education and support</a><span class="small"> (PDF, 183K)</span></p></div><div id="niceng206er2.appb"><h3>Appendix B. Literature search strategies</h3><p>This literature search strategy was used for the following review questions:
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<ul><li class="half_rhythm"><div>What information, education and support do health and social care professionals who provide care for people with ME/CFS need?</div></li><li class="half_rhythm"><div>What are the barriers and facilitators to providing information, education and support for health and social care professionals?</div></li></ul></p><p>The literature searches for this review are detailed below and complied with the methodology outlined in Developing NICE guidelines: the manual.<a class="bk_pop" href="#niceng206er2.ref91"><sup>91</sup></a></p><p>For more information, please see the <a href="/books/NBK589852/bin/niceng206er2_bm4.pdf">Methodology</a> review published as part of the accompanying documents for this guideline.</p><p id="niceng206er2.appb.et1"><a href="/books/NBK589852/bin/niceng206er2-appb-et1.pdf" class="bk_dwnld_icn bk_dwnld_pdf">B.1. Clinical search literature search strategy</a><span class="small"> (PDF, 206K)</span></p></div><div id="niceng206er2.appc"><h3>Appendix C. Qualitative evidence study selection</h3><p id="niceng206er2.appc.et1"><a href="/books/NBK589852/bin/niceng206er2-appc-et1.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Figure 5. Flow chart of qualitative study selection for the review of information, education and support for health and social health professionals</a><span class="small"> (PDF, 110K)</span></p><p id="niceng206er2.appc.et2"><a href="/books/NBK589852/bin/niceng206er2-appc-et2.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Figure 6. Flow chart of qualitative study selection for the review of barriers and facilitators to providing information, education and support</a><span class="small"> (PDF, 102K)</span></p></div><div id="niceng206er2.appd"><h3>Appendix D. Qualitative evidence</h3><p id="niceng206er2.appd.et1"><a href="/books/NBK589852/bin/niceng206er2-appd-et1.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Information, education and support for health and social health professionals</a><span class="small"> (PDF, 343K)</span></p><p id="niceng206er2.appd.et2"><a href="/books/NBK589852/bin/niceng206er2-appd-et2.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Barriers and facilitators to information, education and support for health and social health professionals</a><span class="small"> (PDF, 287K)</span></p></div><div id="niceng206er2.appe"><h3>Appendix E. GRADE-CERQual tables</h3><p id="niceng206er2.appe.et1"><a href="/books/NBK589852/bin/niceng206er2-appe-et1.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Download PDF</a><span class="small"> (270K)</span></p></div><div id="niceng206er2.appf"><h3>Appendix F. Excluded studies</h3><p id="niceng206er2.appf.et1"><a href="/books/NBK589852/bin/niceng206er2-appf-et1.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Clinical studies</a><span class="small"> (PDF, 224K)</span></p></div></div><div id="niceng206er2.rl.r1"><h2 id="_niceng206er2_rl_r1_">References</h2><dl class="temp-labeled-list"><dt>1.</dt><dd><div class="bk_ref" id="niceng206er2.ref1">Aikman
|
||
LP. A phenomenological study of six chronic fatigue immune dysfunction syndrome survivors. Ohio, OH. Ohio university. 1995</div></dd><dt>2.</dt><dd><div class="bk_ref" id="niceng206er2.ref2">Anderson
|
||
JS, Ferrans
|
||
CE. The quality of life of persons with chronic fatigue syndrome. Journal of Nervous and Mental Disease. 1997; 185(6):359–367 [<a href="https://pubmed.ncbi.nlm.nih.gov/9205421" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 9205421</span></a>]</div></dd><dt>3.</dt><dd><div class="bk_ref" id="niceng206er2.ref3">Anderson
|
||
VR, Jason
|
||
LA, Hlavaty
|
||
LE. A qualitative natural history study of ME/CFS in the community. Health Care for Women International. 2014; 35(1):3–26 [<a href="/pmc/articles/PMC4852694/" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC4852694</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/23445264" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 23445264</span></a>]</div></dd><dt>4.</dt><dd><div class="bk_ref" id="niceng206er2.ref4">Anderson
|
||
VR, Jason
|
||
LA, Hlavaty
|
||
LE, Porter
|
||
N, Cudia
|
||
J. A review and meta-synthesis of qualitative studies on myalgic encephalomyelitis/chronic fatigue syndrome. Patient Education and Counseling. 2012; 86(2):147–155 [<a href="/pmc/articles/PMC3229648/" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC3229648</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/21571484" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 21571484</span></a>]</div></dd><dt>5.</dt><dd><div class="bk_ref" id="niceng206er2.ref5">Antcliff
|
||
D, Keeley
|
||
P, Campbell
|
||
M, Woby
|
||
S, McGowan
|
||
L. Exploring patients’ opinions of activity pacing and a new activity pacing questionnaire for chronic pain and/or fatigue: A qualitative study. Physiotherapy. 2016; 102(3):300–307 [<a href="https://pubmed.ncbi.nlm.nih.gov/26385155" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 26385155</span></a>]</div></dd><dt>6.</dt><dd><div class="bk_ref" id="niceng206er2.ref6">Arroll
|
||
MA, Senior
|
||
V. Individuals’ experience of chronic fatigue syndrome/myalgic encephalomyelitis: An interpretative phenomenological analysis. Psychology & Health. 2008; 23(4):443–458 [<a href="https://pubmed.ncbi.nlm.nih.gov/25160578" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 25160578</span></a>]</div></dd><dt>7.</dt><dd><div class="bk_ref" id="niceng206er2.ref7">Asbring
|
||
P. Chronic illness -- a disruption in life: Identity-transformation among women with chronic fatigue syndrome and fibromyalgia. Journal of Advanced Nursing. 2001; 34(3):312–319 [<a href="https://pubmed.ncbi.nlm.nih.gov/11328436" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 11328436</span></a>]</div></dd><dt>8.</dt><dd><div class="bk_ref" id="niceng206er2.ref8">Asbring
|
||
P, Narvanen
|
||
AL. Patient power and control: A study of women with uncertain illness trajectories. Qualitative Health Research. 2004; 14(2):226–240 [<a href="https://pubmed.ncbi.nlm.nih.gov/14768459" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 14768459</span></a>]</div></dd><dt>9.</dt><dd><div class="bk_ref" id="niceng206er2.ref9">Asbring
|
||
P, Narvanen
|
||
AL. Women’s experiences of stigma in relation to chronic fatigue syndrome and fibromyalgia. Qualitative Health Research. 2002; 12(2):148–160 [<a href="https://pubmed.ncbi.nlm.nih.gov/11837367" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 11837367</span></a>]</div></dd><dt>10.</dt><dd><div class="bk_ref" id="niceng206er2.ref10">Ashby
|
||
B, Wright
|
||
B, Jordan
|
||
J. Chronic fatigue syndrome: An evaluation of a community based management programme for adolescents and their families. Child and Adolescent Mental Health. 2006; 11(1):13–18 [<a href="https://pubmed.ncbi.nlm.nih.gov/32811062" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 32811062</span></a>]</div></dd><dt>11.</dt><dd><div class="bk_ref" id="niceng206er2.ref11">Ax
|
||
S, Gregg
|
||
VH, Jones
|
||
D. Caring for a relative with chronic fatigue syndrome: difficulties, cognition and acceptance over time. Journal of the Royal Society for the Promotion of Health. 2002; 122(1):35–42 [<a href="https://pubmed.ncbi.nlm.nih.gov/11989141" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 11989141</span></a>]</div></dd><dt>12.</dt><dd><div class="bk_ref" id="niceng206er2.ref12">Ax
|
||
S, Gregg
|
||
VH, Jones
|
||
D. Chronic fatigue syndrome: Illness attributions and perceptions of control. Homeostasis in Health and Disease. 1998; 39(1–2):44–51</div></dd><dt>13.</dt><dd><div class="bk_ref" id="niceng206er2.ref13">Ax
|
||
S, Gregg
|
||
VH, Jones
|
||
D. Chronic fatigue syndrome: Sufferers’ evaluation of medical support. Journal of the Royal Society of Medicine. 1997; 90(5):250–254 [<a href="/pmc/articles/PMC1296257/" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC1296257</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/9204018" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 9204018</span></a>]</div></dd><dt>14.</dt><dd><div class="bk_ref" id="niceng206er2.ref14">Bayliss
|
||
K, Goodall
|
||
M, Chisholm
|
||
A, Fordham
|
||
B, Chew-Graham
|
||
C, Riste
|
||
L
|
||
et al. Overcoming the barriers to the diagnosis and management of chronic fatigue syndrome/ME in primary care: A meta synthesis of qualitative studies. BMC Family Practice. 2014; 15:44 [<a href="/pmc/articles/PMC3973969/" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC3973969</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/24606913" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 24606913</span></a>]</div></dd><dt>15.</dt><dd><div class="bk_ref" id="niceng206er2.ref15">Bayliss
|
||
K, Riste
|
||
L, Band
|
||
R, Peters
|
||
S, Wearden
|
||
A, Lovell
|
||
K
|
||
et al. Implementing resources to support the diagnosis and management of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) in primary care: A qualitative study. BMC Family Practice. 2016; 17:66 [<a href="/pmc/articles/PMC4893302/" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC4893302</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/27259658" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 27259658</span></a>]</div></dd><dt>16.</dt><dd><div class="bk_ref" id="niceng206er2.ref16">Bayliss
|
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K, Riste
|
||
L, Fisher
|
||
L, Wearden
|
||
A, Peters
|
||
S, Lovell
|
||
K
|
||
et al. Diagnosis and management of chronic fatigue syndrome/myalgic encephalitis in black and minority ethnic people: A qualitative study. Primary Health Care Research & Development. 2014; 15(2):143–155 [<a href="https://pubmed.ncbi.nlm.nih.gov/23702254" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 23702254</span></a>]</div></dd><dt>17.</dt><dd><div class="bk_ref" id="niceng206er2.ref17">Bazelmans
|
||
E, Huibers
|
||
MJH, Bleijenberg
|
||
G. A qualitative analysis of the failure of CBT for chronic fatigue conducted by general practitioners. Behavioural and Cognitive Psychotherapy. 2005; 33(2):225–235</div></dd><dt>18.</dt><dd><div class="bk_ref" id="niceng206er2.ref18">Beasant
|
||
L, Mills
|
||
N, Crawley
|
||
E. Adolescents and mothers value referral to a specialist service for chronic fatigue syndrome or myalgic encephalopathy (CFS/ME). Primary Health Care Research & Development. 2014; 15(2):134–142 [<a href="https://pubmed.ncbi.nlm.nih.gov/23731646" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 23731646</span></a>]</div></dd><dt>19.</dt><dd><div class="bk_ref" id="niceng206er2.ref19">Beaulieu
|
||
MC. Stigma and legitimation in chronic fatigue syndrome: The role of social location. Montreal. McGill University. 2000</div></dd><dt>20.</dt><dd><div class="bk_ref" id="niceng206er2.ref20">Bennett
|
||
B, Goldstein
|
||
D, Friedlander
|
||
M, Hickie
|
||
I, Lloyd
|
||
A. The experience of cancer-related fatigue and chronic fatigue syndrome: A qualitative and comparative study. Journal of Pain and Symptom Management. 2007; 34(2):126–135 [<a href="https://pubmed.ncbi.nlm.nih.gov/17544246" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 17544246</span></a>]</div></dd><dt>21.</dt><dd><div class="bk_ref" id="niceng206er2.ref21">Brady
|
||
E, Segar
|
||
J, Sanders
|
||
C. “You get to know the people and whether they’re talking sense or not”: Negotiating trust on health-related forums. Social Science and Medicine. 2016; 162:151–157 [<a href="/pmc/articles/PMC4962769/" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC4962769</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/27359321" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 27359321</span></a>]</div></dd><dt>22.</dt><dd><div class="bk_ref" id="niceng206er2.ref22">Brigden
|
||
A, Barnett
|
||
J, Parslow
|
||
RM, Beasant
|
||
L, Crawley
|
||
E. Using the internet to cope with chronic fatigue syndrome/myalgic encephalomyelitis in adolescence: A qualitative study. BMJ Paediatrics Open. 2018; 2:e000299 [<a href="/pmc/articles/PMC6109806/" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC6109806</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/30167477" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 30167477</span></a>]</div></dd><dt>23.</dt><dd><div class="bk_ref" id="niceng206er2.ref23">Brooks
|
||
JM, Daglish
|
||
J, Wearden
|
||
AJ. Attributions, distress and behavioural responses in the significant others of people with chronic fatigue syndrome. Journal of Health Psychology. 2013; 18(10):1288–1295 [<a href="https://pubmed.ncbi.nlm.nih.gov/23180874" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 23180874</span></a>]</div></dd><dt>24.</dt><dd><div class="bk_ref" id="niceng206er2.ref24">Broughton
|
||
J, Harris
|
||
S, Beasant
|
||
L, Crawley
|
||
E, Collin
|
||
SM. Adult patients’ experiences of NHS specialist services for chronic fatigue syndrome (CFS/ME): A qualitative study in England. BMC Health Services Research. 2017; 17:384 [<a href="/pmc/articles/PMC5457632/" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC5457632</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/28576141" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 28576141</span></a>]</div></dd><dt>25.</dt><dd><div class="bk_ref" id="niceng206er2.ref25">Bülow
|
||
PH, Hydén
|
||
L-C. In dialogue with time: Identity and illness in narratives about chronic fatigue. Narrative Inquiry. 2003; 13(1):71–97</div></dd><dt>26.</dt><dd><div class="bk_ref" id="niceng206er2.ref26">Caplan
|
||
PJ. Chronic fatigue syndrome: A first-person story. Women & Therapy. 2001; 23(1):23–43</div></dd><dt>27.</dt><dd><div class="bk_ref" id="niceng206er2.ref27">Chernow
|
||
JR. The blessing of a curse: An examination of growth and transformation from chronic fatigue syndrome. California. Institute of Transpersonal Psychology. 2008</div></dd><dt>28.</dt><dd><div class="bk_ref" id="niceng206er2.ref28">Cheshire
|
||
A, Ridge
|
||
D, Clark
|
||
L, White
|
||
P. Guided graded exercise self-help for chronic fatigue syndrome: Patient experiences and perceptions
|
||
Disability and Rehabilitation. 2020; 42(3):368–377 [<a href="https://pubmed.ncbi.nlm.nih.gov/30325677" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 30325677</span></a>]</div></dd><dt>29.</dt><dd><div class="bk_ref" id="niceng206er2.ref29">Chew-Graham
|
||
C, Brooks
|
||
J, Wearden
|
||
A, Dowrick
|
||
C, Peters
|
||
S. Factors influencing engagement of patients in a novel intervention for CFS/ME: A qualitative study. Primary Health Care Research & Development. 2011; 12(2):112–122 [<a href="https://pubmed.ncbi.nlm.nih.gov/21457596" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 21457596</span></a>]</div></dd><dt>30.</dt><dd><div class="bk_ref" id="niceng206er2.ref30">Chew-Graham
|
||
C, Dowrick
|
||
C, Wearden
|
||
A, Richardson
|
||
V, Peters
|
||
S. Making the diagnosis of Chronic Fatigue Syndrome/Myalgic Encephalitis in primary care: A qualitative study. BMC Family Practice. 2010; 11:16 [<a href="/pmc/articles/PMC2836312/" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC2836312</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/20178588" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 20178588</span></a>]</div></dd><dt>31.</dt><dd><div class="bk_ref" id="niceng206er2.ref31">Chew-Graham
|
||
CA, Cahill
|
||
G, Dowrick
|
||
C, Wearden
|
||
A, Peters
|
||
S. Using multiple sources of knowledge to reach clinical understanding of chronic fatigue syndrome. Annals of Family Medicine. 2008; 6(4):340–348 [<a href="/pmc/articles/PMC2478494/" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC2478494</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/18626034" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 18626034</span></a>]</div></dd><dt>32.</dt><dd><div class="bk_ref" id="niceng206er2.ref32">Clarke
|
||
JN. Chronic fatigue syndrome: Gender differences in the search for legitimacy. Australian and New Zealand Journal of Mental Health Nursing. 1999; 8(4):123–133 [<a href="https://pubmed.ncbi.nlm.nih.gov/10855087" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 10855087</span></a>]</div></dd><dt>33.</dt><dd><div class="bk_ref" id="niceng206er2.ref33">Clarke
|
||
JN. The search for legitimacy and the “expertization” of the lay person: The case of chronic fatigue syndrome. Social Work in Health Care. 2000; 30(3):73–93 [<a href="https://pubmed.ncbi.nlm.nih.gov/10880009" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 10880009</span></a>]</div></dd><dt>34.</dt><dd><div class="bk_ref" id="niceng206er2.ref34">Clements
|
||
A, Sharpe
|
||
M, Simkin
|
||
S, Borrill
|
||
J, Hawton
|
||
K. Chronic fatigue syndrome: A qualitative investigation of patients’ beliefs about the illness. Journal of Psychosomatic Research. 1997; 42(6):615–624 [<a href="https://pubmed.ncbi.nlm.nih.gov/9226609" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 9226609</span></a>]</div></dd><dt>35.</dt><dd><div class="bk_ref" id="niceng206er2.ref35">Costello
|
||
NL. Emotional expression and trauma: Relationships to optimism, coping, neuroendocrine, and immune system functioning. Miami. Univeristy of Miami. 1998</div></dd><dt>36.</dt><dd><div class="bk_ref" id="niceng206er2.ref36">Davison
|
||
KP, Pennebaker
|
||
JW. Virtual naratives: Illness representations in online support groups. ‘In:’ Weinman
|
||
JA, editor. Perceptions of health and illness: Current research and applications: Harwood Academic Publishers, Amsterdam. 1997. p. 463–486, Chapter ix, 501 Pages.</div></dd><dt>37.</dt><dd><div class="bk_ref" id="niceng206er2.ref37">de Carvalho Leite
|
||
JC, de
|
||
LDM, Killett
|
||
A, Kale
|
||
S, Nacul
|
||
L, McArthur
|
||
M
|
||
et al. Social support needs for equity in health and social care: a thematic analysis of experiences of people with chronic fatigue syndrome/myalgic encephalomyelitis. International Journal for Equity in Health. 2011; 10:46 [<a href="/pmc/articles/PMC3229491/" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC3229491</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/22044797" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 22044797</span></a>]</div></dd><dt>38.</dt><dd><div class="bk_ref" id="niceng206er2.ref38">De Silva
|
||
RE, Bayliss
|
||
K, Riste
|
||
L, Chew-Graham
|
||
CA. Diagnosing chronic fatigue syndrome in south asians: Lessons from a secondary analysis of a uk qualitative study. Journal of Family Medicine & Primary Care. 2013; 2(3):277–282 [<a href="/pmc/articles/PMC3902687/" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC3902687</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/24479098" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 24479098</span></a>]</div></dd><dt>39.</dt><dd><div class="bk_ref" id="niceng206er2.ref39">Dennison
|
||
L, Stanbrook
|
||
R, Moss-Morris
|
||
R, Yardley
|
||
L, Chalder
|
||
T. Cognitive behavioural therapy and psycho-education for chronic fatigue syndrome in young people: Reflections from the families’ perspective. British Journal of Health Psychology. 2010; 15(Pt 1):167–183 [<a href="https://pubmed.ncbi.nlm.nih.gov/19422732" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 19422732</span></a>]</div></dd><dt>40.</dt><dd><div class="bk_ref" id="niceng206er2.ref40">Devendorf
|
||
AR, Jackson
|
||
CT, Sunnquist
|
||
M, Jason
|
||
LA. Approaching recovery from myalgic encephalomyelitis and chronic fatigue syndrome: Challenges to consider in research and practice
|
||
Journal of Health Psychology. 2019; 24(10):1412–1424 [<a href="/pmc/articles/PMC5930162/" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC5930162</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/29182007" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 29182007</span></a>]</div></dd><dt>41.</dt><dd><div class="bk_ref" id="niceng206er2.ref41">Devendorf
|
||
AR, Jackson
|
||
CT, Sunnquist
|
||
M, Jason
|
||
LA. Defining and measuring recovery from myalgic encephalomyelitis and chronic fatigue syndrome: The physician perspective. Disability and Rehabilitation. 2017; 41(2):158–165 [<a href="/pmc/articles/PMC6123286/" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC6123286</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/28982247" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 28982247</span></a>]</div></dd><dt>42.</dt><dd><div class="bk_ref" id="niceng206er2.ref42">Devendorf
|
||
AR, McManimen
|
||
SL, Jason
|
||
LA. Suicidal ideation in non-depressed individuals: The effects of a chronic, misunderstood illness. Journal of Health Psychology. 2018; 10.1177/1359105318785450 [<a href="/pmc/articles/PMC9185123/" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC9185123</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/29992837" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 29992837</span></a>] [<a href="http://dx.crossref.org/10.1177/1359105318785450" ref="pagearea=cite-ref&targetsite=external&targetcat=link&targettype=uri">CrossRef</a>]</div></dd><dt>43.</dt><dd><div class="bk_ref" id="niceng206er2.ref43">Donalek
|
||
JG. When a parent is chronically ill: Chronic fatigue syndrome. Nursing Research. 2009; 58(5):332–339 [<a href="https://pubmed.ncbi.nlm.nih.gov/19752673" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 19752673</span></a>]</div></dd><dt>44.</dt><dd><div class="bk_ref" id="niceng206er2.ref44">Drachler
|
||
MdL, Leite
|
||
JC, Hooper
|
||
L, Hong
|
||
CS, Pheby
|
||
D, Nacul
|
||
L
|
||
et al. The expressed needs of people with chronic fatigue syndrome/myalgic encephalomyelitis: A systematic review. BMC Public Health. 2009; 9:458 [<a href="/pmc/articles/PMC2799412/" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC2799412</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/20003363" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 20003363</span></a>]</div></dd><dt>45.</dt><dd><div class="bk_ref" id="niceng206er2.ref45">Edwards
|
||
CR, Thompson
|
||
AR, Blair
|
||
A. An ‘overwhelming illness’: Women’s experiences of learning to live with chronic fatigue syndrome/myalgic encephalomyelitis. Journal of Health Psychology. 2007; 12(2):203–214 [<a href="https://pubmed.ncbi.nlm.nih.gov/17284485" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 17284485</span></a>]</div></dd><dt>46.</dt><dd><div class="bk_ref" id="niceng206er2.ref46">Everett
|
||
T, Fulton
|
||
C. An exploration of secondary school teachers’ beliefs and attitudes about adolescent children with chronic fatigue syndrome. Support for Learning. 2002; 17(1):27–33</div></dd><dt>47.</dt><dd><div class="bk_ref" id="niceng206er2.ref47">Fisher
|
||
H, Crawley
|
||
E. Why do young people with CFS/ME feel anxious? A qualitative study. Clinical Child Psychology and Psychiatry. 2013; 18(4):556–573 [<a href="https://pubmed.ncbi.nlm.nih.gov/23093520" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 23093520</span></a>]</div></dd><dt>48.</dt><dd><div class="bk_ref" id="niceng206er2.ref48">Fowler
|
||
T, Duthie
|
||
P, Thapar
|
||
A, Farmer
|
||
A. The definition of disabling fatigue in children and adolescents. BMC Family Practice. 2005; 6:33 [<a href="/pmc/articles/PMC1192794/" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC1192794</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/16091130" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 16091130</span></a>]</div></dd><dt>49.</dt><dd><div class="bk_ref" id="niceng206er2.ref49">Friedberg
|
||
F, Coronel
|
||
J, Seva
|
||
V, Adamowicz
|
||
JL, Napoli
|
||
A. Participant attributions for global change ratings in unexplained chronic fatigue and chronic fatigue syndrome. Journal of Health Psychology. 2016; 21(5):690–698 [<a href="https://pubmed.ncbi.nlm.nih.gov/24913009" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 24913009</span></a>]</div></dd><dt>50.</dt><dd><div class="bk_ref" id="niceng206er2.ref50">Friedberg
|
||
F, Jason
|
||
LA. Clinical interview with a CFS patient. Understanding chronic fatigue syndrome: An empirical guide to assessment and treatment: American Psychological Association, Washington, DC. 1998. p. 169–186, Chapter xvii, 266 Pages.</div></dd><dt>51.</dt><dd><div class="bk_ref" id="niceng206er2.ref51">Gan
|
||
C, Gargaro
|
||
J, Brandys
|
||
C, Gerber
|
||
G, Boschen
|
||
K. Family caregivers’ support needs after brain injury: A synthesis of perspectives from caregivers, programs, and researchers. NeuroRehabilitation. 2010; 27(1):5–18 [<a href="https://pubmed.ncbi.nlm.nih.gov/20634597" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 20634597</span></a>]</div></dd><dt>52.</dt><dd><div class="bk_ref" id="niceng206er2.ref52">Gilje
|
||
AM, Soderlund
|
||
A, Malterud
|
||
K. Obstructions for quality care experienced by patients with chronic fatigue syndrome (CFS)--a case study. Patient Education and Counseling. 2008; 73(1):36–41 [<a href="https://pubmed.ncbi.nlm.nih.gov/18486415" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 18486415</span></a>]</div></dd><dt>53.</dt><dd><div class="bk_ref" id="niceng206er2.ref53">Gotts
|
||
ZM, Newton
|
||
JL, Ellis
|
||
JG, Deary
|
||
V. The experience of sleep in chronic fatigue syndrome: A qualitative interview study with patients. British Journal of Health Psychology. 2016; 21(1):71–92 [<a href="https://pubmed.ncbi.nlm.nih.gov/25728396" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 25728396</span></a>]</div></dd><dt>54.</dt><dd><div class="bk_ref" id="niceng206er2.ref54">Gray
|
||
ML, Fossey
|
||
EM. Illness experience and occupations of people with chronic fatigue syndrome. Australian Occupational Therapy Journal. 2003; 50(3):127–136</div></dd><dt>55.</dt><dd><div class="bk_ref" id="niceng206er2.ref55">Guise
|
||
J, McVittie
|
||
C, McKinlay
|
||
A. A discourse analytic study of ME/CFS (chronic fatigue syndrome) sufferers’ experiences of interactions with doctors. Journal of Health Psychology. 2010; 15(3):426–435 [<a href="https://pubmed.ncbi.nlm.nih.gov/20348363" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 20348363</span></a>]</div></dd><dt>56.</dt><dd><div class="bk_ref" id="niceng206er2.ref56">Guise
|
||
J, Widdicombe
|
||
S, McKinlay
|
||
A. ‘What is it like to have ME?’: The discursive construction of ME in computer-mediated communication and face-to-face interaction. Health: An Interdisciplinary Journal for the Social Study of Health, Illness & Medicine. 2007; 11(1):87–108 [<a href="https://pubmed.ncbi.nlm.nih.gov/17158833" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 17158833</span></a>]</div></dd><dt>57.</dt><dd><div class="bk_ref" id="niceng206er2.ref57">Hannon
|
||
K, Peters
|
||
S, Fisher
|
||
L, Riste
|
||
L, Wearden
|
||
A, Lovell
|
||
K
|
||
et al. Developing resources to support the diagnosis and management of chronic fatigue syndrome/myalgic encephalitis (CFS/ME) in primary care: A qualitative study. BMC Family Practice. 2012; 13:93 [<a href="/pmc/articles/PMC3573921/" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC3573921</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/22998151" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 22998151</span></a>]</div></dd><dt>58.</dt><dd><div class="bk_ref" id="niceng206er2.ref58">Hareide
|
||
L, Finset
|
||
A, Wyller
|
||
VB. Chronic fatigue syndrome: A qualitative investigation of young patient’s beliefs and coping strategies. Disability and Rehabilitation. 2011; 33(23–24):2255–2263 [<a href="https://pubmed.ncbi.nlm.nih.gov/21473686" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 21473686</span></a>]</div></dd><dt>59.</dt><dd><div class="bk_ref" id="niceng206er2.ref59">Harris
|
||
K, Band
|
||
RJ, Cooper
|
||
H, Macintyre
|
||
VG, Mejia
|
||
A, Wearden
|
||
AJ. Distress in significant others of patients with chronic fatigue syndrome: A systematic review of the literature. British Journal of Health Psychology. 2016; 21(4):881–893 [<a href="https://pubmed.ncbi.nlm.nih.gov/27255790" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 27255790</span></a>]</div></dd><dt>60.</dt><dd><div class="bk_ref" id="niceng206er2.ref60">Harris
|
||
S, Gilbert
|
||
M, Beasant
|
||
L, Linney
|
||
C, Broughton
|
||
J, Crawley
|
||
E. A qualitative investigation of eating difficulties in adolescents with chronic fatigue syndrome/myalgic encephalomyelitis. Clinical Child Psychology and Psychiatry. 2017; 22(1):128–139 [<a href="/pmc/articles/PMC5207298/" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC5207298</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/27215228" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 27215228</span></a>]</div></dd><dt>61.</dt><dd><div class="bk_ref" id="niceng206er2.ref61">Hart
|
||
B, Grace
|
||
VM. Fatigue in chronic fatigue syndrome: A discourse analysis of women’s experiential narratives. Health Care for Women International. 2000; 21(3):187–201 [<a href="https://pubmed.ncbi.nlm.nih.gov/11111465" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 11111465</span></a>]</div></dd><dt>62.</dt><dd><div class="bk_ref" id="niceng206er2.ref62">Higginson
|
||
S, Mansell
|
||
W. What is the mechanism of psychological change? A qualitative analysis of six individuals who experienced personal change and recovery. Psychology and Psychotherapy: Theory, Research and Practice. 2008; 81(3):309–328 [<a href="https://pubmed.ncbi.nlm.nih.gov/18588749" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 18588749</span></a>]</div></dd><dt>63.</dt><dd><div class="bk_ref" id="niceng206er2.ref63">Horrocks
|
||
M, Ward
|
||
CD. Meanings of CFS/ME in the lives of couples. ‘In:’ Ward
|
||
CD, editor. Meanings of ME: Interpersonal and social dimensions of chronic fatigue: Palgrave Macmillan, New York, NY. 2015. p. 86–105, Chapter xi, 231 Pages.</div></dd><dt>64.</dt><dd><div class="bk_ref" id="niceng206er2.ref64">Horton-Salway
|
||
M. Bio-psycho-social reasoning in GPs’ case narratives: The discursive construction of ME patients’ identities. Health: An Interdisciplinary Journal for the Social Study of Health, Illness & Medicine. 2002; 6(4):401–421</div></dd><dt>65.</dt><dd><div class="bk_ref" id="niceng206er2.ref65">Horton-Salway
|
||
M. The local production of knowledge: disease labels, identities and category entitlements in ME support group talk. Health: An Interdisciplinary Journal for the Social Study of Health, Illness & Medicine. 2004; 8(3):351–371 [<a href="https://pubmed.ncbi.nlm.nih.gov/15200760" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 15200760</span></a>]</div></dd><dt>66.</dt><dd><div class="bk_ref" id="niceng206er2.ref66">Horton
|
||
SM, Poland
|
||
F, Kale
|
||
S, Drachler
|
||
Mde L, de Carvalho Leite
|
||
JC, McArthur
|
||
MA
|
||
et al. Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) in adults: A qualitative study of perspectives from professional practice. BMC Family Practice. 2010; 11:89 [<a href="/pmc/articles/PMC2994803/" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC2994803</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/21078171" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 21078171</span></a>]</div></dd><dt>67.</dt><dd><div class="bk_ref" id="niceng206er2.ref67">Jason
|
||
LA, Reed
|
||
J. The use of mixed methods in studying a chronic illness. Health Psychology and Behavioral Medicine. 2015; 3(1):40–51 [<a href="/pmc/articles/PMC4831644/" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC4831644</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/27088060" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 27088060</span></a>]</div></dd><dt>68.</dt><dd><div class="bk_ref" id="niceng206er2.ref68">Jelbert
|
||
R, Stedmon
|
||
J, Stephens
|
||
A. A qualitative exploration of adolescents’ experiences of chronic fatigue syndrome. Clinical Child Psychology and Psychiatry. 2010; 15(2):267–283 [<a href="https://pubmed.ncbi.nlm.nih.gov/20179018" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 20179018</span></a>]</div></dd><dt>69.</dt><dd><div class="bk_ref" id="niceng206er2.ref69">Jensen
|
||
SL. Coping with chronic fatigue. Kalamazoo, MI. Western Michigan University
|
||
2001</div></dd><dt>70.</dt><dd><div class="bk_ref" id="niceng206er2.ref70">Keech
|
||
A, Sandler
|
||
CX, Vollmer-Conna
|
||
U, Cvejic
|
||
E, Lloyd
|
||
AR, Barry
|
||
BK. Capturing the post-exertional exacerbation of fatigue following physical and cognitive challenge in patients with chronic fatigue syndrome. Journal of Psychosomatic Research. 2015; 79(6):537–549 [<a href="https://pubmed.ncbi.nlm.nih.gov/26359713" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 26359713</span></a>]</div></dd><dt>71.</dt><dd><div class="bk_ref" id="niceng206er2.ref71">Kendrick
|
||
EA, Beesley
|
||
D. Perceived stress, illness invalidation, and symptom severity in myalgic encephalomyelitis/chronic fatigue syndrome. Fatigue: Biomedicine, Health and Behavior. 2016; 4(4):217–225</div></dd><dt>72.</dt><dd><div class="bk_ref" id="niceng206er2.ref72">Kisely
|
||
SR. Treatments for chronic fatigue syndrome and the Internet: A systematic survey of what your patients are reading. Australian and New Zealand Journal of Psychiatry. 2002; 36(2):240–245 [<a href="https://pubmed.ncbi.nlm.nih.gov/11982547" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 11982547</span></a>]</div></dd><dt>73.</dt><dd><div class="bk_ref" id="niceng206er2.ref73">Larun
|
||
L, Malterud
|
||
K. Finding the right balance of physical activity: A focus group study about experiences among patients with chronic fatigue syndrome. Patient Education and Counseling. 2011; 83(2):222–226 [<a href="https://pubmed.ncbi.nlm.nih.gov/20580520" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 20580520</span></a>]</div></dd><dt>74.</dt><dd><div class="bk_ref" id="niceng206er2.ref74">Larun
|
||
L, Malterud
|
||
K. Identity and coping experiences in chronic fatigue syndrome: A synthesis of qualitative studies. Patient Education and Counseling. 2007; 69(1–3):20–28 [<a href="https://pubmed.ncbi.nlm.nih.gov/17698311" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 17698311</span></a>]</div></dd><dt>75.</dt><dd><div class="bk_ref" id="niceng206er2.ref75">Lee
|
||
NFR. Illness experience of Chinese immigrants with chronic fatigue and weakness. Canada. University of Toronto. 2000</div></dd><dt>76.</dt><dd><div class="bk_ref" id="niceng206er2.ref76">Lee
|
||
R, Rodin
|
||
G, Devins
|
||
G, Weiss
|
||
MG. Illness experience, meaning and help-seeking among Chinese immigrants in Canada with chronic fatigue and weakness. Anthropology and Medicine. 2001; 8(1):89–107</div></dd><dt>77.</dt><dd><div class="bk_ref" id="niceng206er2.ref77">Levine
|
||
PH, Snow
|
||
PG, Ranum
|
||
BA, Paul
|
||
C, Holmes
|
||
MJ. Epidemic neuromyasthenia and chronic fatigue syndrome in west Otago, New Zealand. A 10-year follow-up. Archives of Internal Medicine. 1997; 157(7):750–754 [<a href="https://pubmed.ncbi.nlm.nih.gov/9125006" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 9125006</span></a>]</div></dd><dt>78.</dt><dd><div class="bk_ref" id="niceng206er2.ref78">Lian
|
||
OS, Rapport
|
||
F. Life according to ME: Caught in the ebb-tide. Health: An Interdisciplinary Journal for the Social Study of Health, Illness & Medicine. 2016; 20(6):578–598 [<a href="https://pubmed.ncbi.nlm.nih.gov/26755549" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 26755549</span></a>]</div></dd><dt>79.</dt><dd><div class="bk_ref" id="niceng206er2.ref79">Lin
|
||
JM, Brimmer
|
||
DJ, Boneva
|
||
RS, Jones
|
||
JF, Reeves
|
||
WC. Barriers to healthcare utilization in fatiguing illness: a population-based study in Georgia. BMC Health Services Research. 2009; 9:13 [<a href="/pmc/articles/PMC2651135/" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC2651135</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/19154587" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 19154587</span></a>]</div></dd><dt>80.</dt><dd><div class="bk_ref" id="niceng206er2.ref80">Lingard
|
||
RJ, Court
|
||
J. Can couples find a silver lining amid the dark cloud of ME/CFS: A pilot study. The Family Journal. 2014; 22(3):304–310</div></dd><dt>81.</dt><dd><div class="bk_ref" id="niceng206er2.ref81">Littrell
|
||
NM. Misconceptions concerning chronic fatigue syndrome (CFS) among medical practitioners without CFS specialization. Minnesota, MN. Walden University. 2012</div></dd><dt>82.</dt><dd><div class="bk_ref" id="niceng206er2.ref82">Lombaard
|
||
A, Mouton
|
||
J. Chronic fatigue syndrome, the body and the self: A qualitative analysis. South African Journal of Psychology. 2005; 35(2):286–307</div></dd><dt>83.</dt><dd><div class="bk_ref" id="niceng206er2.ref83">Lovell
|
||
DM. Chronic fatigue syndrome among overseas development workers: A qualitative study. Journal of Travel Medicine. 1999; 6(1):16–23 [<a href="https://pubmed.ncbi.nlm.nih.gov/10071368" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 10071368</span></a>]</div></dd><dt>84.</dt><dd><div class="bk_ref" id="niceng206er2.ref84">Marks
|
||
MR, Huws
|
||
JC, Whitehead
|
||
L. Working with uncertainty: A grounded theory study of health-care professionals’ experiences of working with children and adolescents with chronic fatigue syndrome. Journal of Health Psychology. 2016; 21(11):2658–2667 [<a href="https://pubmed.ncbi.nlm.nih.gov/25957226" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 25957226</span></a>]</div></dd><dt>85.</dt><dd><div class="bk_ref" id="niceng206er2.ref85">McCue
|
||
P. CFS/ME and mental health diagnoses: A qualitative approach to assessing the experiences of women who have now recovered. Clinical Effectiveness in Nursing. 2004; 8(3–4):194–201</div></dd><dt>86.</dt><dd><div class="bk_ref" id="niceng206er2.ref86">McDermott
|
||
C, Lynch
|
||
J, Leydon
|
||
GM. Patients’ hopes and expectations of a specialist chronic fatigue syndrome/ME service: A qualitative study. Family Practice. 2011; 28(5):572–578 [<a href="https://pubmed.ncbi.nlm.nih.gov/21555341" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 21555341</span></a>]</div></dd><dt>87.</dt><dd><div class="bk_ref" id="niceng206er2.ref87">McInnis
|
||
OA, McQuaid
|
||
RJ, Bombay
|
||
A, Matheson
|
||
K, Anisman
|
||
H. Finding benefit in stressful uncertain circumstances: Relations to social support and stigma among women with unexplained illnesses. Stress. 2015; 18(2):169–177 [<a href="https://pubmed.ncbi.nlm.nih.gov/25544022" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 25544022</span></a>]</div></dd><dt>88.</dt><dd><div class="bk_ref" id="niceng206er2.ref88">Mihelicova
|
||
M, Siegel
|
||
Z, Evans
|
||
M, Brown
|
||
A, Jason
|
||
L. Caring for people with severe myalgic encephalomyelitis: An interpretative phenomenological analysis of parents’ experiences. Journal of Health Psychology. 2016; 21(12):2824–2837 [<a href="/pmc/articles/PMC4675701/" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC4675701</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/26063209" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 26063209</span></a>]</div></dd><dt>89.</dt><dd><div class="bk_ref" id="niceng206er2.ref89">Missen
|
||
A, Hollingworth
|
||
W, Eaton
|
||
N, Crawley
|
||
E. The financial and psychological impacts on mothers of children with chronic fatigue syndrome (CFS/ME). Child: Care, Health and Development. 2012; 38(4):505–512 [<a href="https://pubmed.ncbi.nlm.nih.gov/21880054" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 21880054</span></a>]</div></dd><dt>90.</dt><dd><div class="bk_ref" id="niceng206er2.ref90">Moore
|
||
L. Chronic fatigue syndrome: All in the mind? An occupational therapy perspective. British Journal of Occupational Therapy. 2000; 63(4):163–170</div></dd><dt>91.</dt><dd><div class="bk_ref" id="niceng206er2.ref91">National Institute for Health and Care Excellence. Developing NICE guidelines: the manual [Updated 2018]. London. National Institute for Health and Care Excellence, 2014. Available from: <a href="http://www.nice.org.uk/article/PMG20/chapter/1%20Introduction%20and%20overview" ref="pagearea=cite-ref&targetsite=external&targetcat=link&targettype=uri">http://www<wbr style="display:inline-block"></wbr>.nice.org.uk<wbr style="display:inline-block"></wbr>/article/PMG20/chapter<wbr style="display:inline-block"></wbr>/1%20Introduction%20and%20overview</a> [<a href="https://pubmed.ncbi.nlm.nih.gov/26677490" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 26677490</span></a>]</div></dd><dt>92.</dt><dd><div class="bk_ref" id="niceng206er2.ref92">Njolstad
|
||
BW, Mengshoel
|
||
AM, Sveen
|
||
U. ‘It’s like being a slave to your own body in a way’: A qualitative study of adolescents with chronic fatigue syndrome
|
||
Scandinavian Journal of Occupational Therapy. 2019; 26(7):505–514 [<a href="https://pubmed.ncbi.nlm.nih.gov/29607759" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 29607759</span></a>]</div></dd><dt>93.</dt><dd><div class="bk_ref" id="niceng206er2.ref93">Olson
|
||
K, Zimka
|
||
O, Stein
|
||
E. The nature of fatigue in Chronic Fatigue Syndrome. Qualitative Health Research. 2015; 25(10):1410–1422 [<a href="https://pubmed.ncbi.nlm.nih.gov/25721719" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 25721719</span></a>]</div></dd><dt>94.</dt><dd><div class="bk_ref" id="niceng206er2.ref94">Ong
|
||
BN, Evans
|
||
D, Bartlam
|
||
A. A patient’s journey with myalgic encephalomyelitis. BMJ. 2005; 330(7492):648–650 [<a href="/pmc/articles/PMC554915/" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC554915</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/15774997" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 15774997</span></a>]</div></dd><dt>95.</dt><dd><div class="bk_ref" id="niceng206er2.ref95">Parslow
|
||
R, Patel
|
||
A, Beasant
|
||
L, Haywood
|
||
K, Johnson
|
||
D, Crawley
|
||
E. What matters to children with CFS/ME? A conceptual model as the first stage in developing a PROM. Archives of Disease in Childhood. 2015; 100(12):1141–1147 [<a href="/pmc/articles/PMC4680202/" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC4680202</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/26453575" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 26453575</span></a>]</div></dd><dt>96.</dt><dd><div class="bk_ref" id="niceng206er2.ref96">Parslow
|
||
RM, Anderson
|
||
N, Byrne
|
||
D, Shaw
|
||
A, Haywood
|
||
KL, Crawley
|
||
E. Adolescent’s descriptions of fatigue, fluctuation and payback in chronic fatigue syndrome/myalgic encephalopathy (CFS/ME): Interviews with adolescents and parents. BMJ Paediatrics Open. 2018; 2:e000281 [<a href="/pmc/articles/PMC6307594/" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC6307594</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/30613800" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 30613800</span></a>]</div></dd><dt>97.</dt><dd><div class="bk_ref" id="niceng206er2.ref97">Parslow
|
||
RM, Harris
|
||
S, Broughton
|
||
J, Alattas
|
||
A, Crawley
|
||
E, Haywood
|
||
K
|
||
et al. Children’s experiences of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME): A systematic review and meta-ethnography of qualitative studies. BMJ Open. 2017; 7:e012633 [<a href="/pmc/articles/PMC5253584/" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC5253584</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/28087544" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 28087544</span></a>]</div></dd><dt>98.</dt><dd><div class="bk_ref" id="niceng206er2.ref98">Parslow
|
||
RM, Shaw
|
||
A, Haywood
|
||
KL, Crawley
|
||
E. Important factors to consider when treating children with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME): Perspectives of health professionals from specialist services. BMC Pediatrics. 2017; 17:43 [<a href="/pmc/articles/PMC5286567/" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC5286567</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/28143516" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 28143516</span></a>]</div></dd><dt>99.</dt><dd><div class="bk_ref" id="niceng206er2.ref99">Pemberton
|
||
S, Cox
|
||
D. Perspectives of time and occupation: Experiences of people with chronic fatigue syndrome/myalgic encephalomyelitis. Journal of Occupational Science. 2014; 21(4):488–503</div></dd><dt>100.</dt><dd><div class="bk_ref" id="niceng206er2.ref100">Pemberton
|
||
S, Cox
|
||
DL. Experiences of daily activity in chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and their implications for rehabilitation programmes. Disability and Rehabilitation. 2014; 36(21):1790–1797 [<a href="https://pubmed.ncbi.nlm.nih.gov/24369769" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 24369769</span></a>]</div></dd><dt>101.</dt><dd><div class="bk_ref" id="niceng206er2.ref101">Picariello
|
||
F, Ali
|
||
S, Foubister
|
||
C, Chalder
|
||
T. ‘It feels sometimes like my house has burnt down, but I can see the sky’: A qualitative study exploring patients’ views of cognitive behavioural therapy for chronic fatigue syndrome. British Journal of Health Psychology. 2017; 22(3):383–413 [<a href="https://pubmed.ncbi.nlm.nih.gov/28349621" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 28349621</span></a>]</div></dd><dt>102.</dt><dd><div class="bk_ref" id="niceng206er2.ref102">Pinikahana
|
||
J, Holloway
|
||
G, Millen
|
||
N. The limits of medicine and the social consequences for sufferers of chronic fatigue syndrome. Australian Journal of Primary Health. 2002; 8(2):70–76</div></dd><dt>103.</dt><dd><div class="bk_ref" id="niceng206er2.ref103">Pinxsterhuis
|
||
I, Strand
|
||
EB, Stormorken
|
||
E, Sveen
|
||
U. From chaos and insecurity to understanding and coping: Experienced benefits of a group-based education programme for people with chronic fatigue syndrome. British Journal of Guidance & Counselling. 2015; 43(4):463–475</div></dd><dt>104.</dt><dd><div class="bk_ref" id="niceng206er2.ref104">Pinxsterhuis
|
||
I, Strand
|
||
EB, Sveen
|
||
U. Coping with chronic fatigue syndrome: a review and synthesis of qualitative studies. Fatigue: Biomedicine, Health and Behavior. 2015; 3(3):173–188</div></dd><dt>105.</dt><dd><div class="bk_ref" id="niceng206er2.ref105">Prins
|
||
JB, Bleijenberg
|
||
G, Rouweler
|
||
EK, Van Weel
|
||
C, Van der Meer
|
||
JWM. Doctor-patient relationship in primary care of chronic fatigue syndrome: Perspectives of the doctor and the patient. Journal of Chronic Fatigue Syndrome. 2000; 7(4):3–15</div></dd><dt>106.</dt><dd><div class="bk_ref" id="niceng206er2.ref106">Raine
|
||
R, Carter
|
||
S, Sensky
|
||
T, Black
|
||
N. General practitioners’ perceptions of chronic fatigue syndrome and beliefs about its management, compared with irritable bowel syndrome: Qualitative study. BMJ. 2004; 328(7452):1354–1357 [<a href="/pmc/articles/PMC420289/" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC420289</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/15169743" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 15169743</span></a>]</div></dd><dt>107.</dt><dd><div class="bk_ref" id="niceng206er2.ref107">Ray
|
||
C, Jefferies
|
||
S, Weir
|
||
W, Hayes
|
||
K, Simon
|
||
S, Akingbade
|
||
F
|
||
et al. Making sense of chronic fatigue syndrome: Patients’ accounts of onset. Psychology & Health. 1998; 13(1):99–109</div></dd><dt>108.</dt><dd><div class="bk_ref" id="niceng206er2.ref108">Ray
|
||
C, Jefferies
|
||
S, Weir
|
||
WR. Life-events and the course of chronic fatigue syndrome. British Journal of Medical Psychology. 1995; 68(Pt 4):323–331 [<a href="https://pubmed.ncbi.nlm.nih.gov/8688371" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 8688371</span></a>]</div></dd><dt>109.</dt><dd><div class="bk_ref" id="niceng206er2.ref109">Reme
|
||
SE, Archer
|
||
N, Chalder
|
||
T. Experiences of young people who have undergone the Lightning Process to treat chronic fatigue syndrome/myalgic encephalomyelitis--a qualitative study. British Journal of Health Psychology. 2013; 18(3):508–525 [<a href="https://pubmed.ncbi.nlm.nih.gov/22989369" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 22989369</span></a>]</div></dd><dt>110.</dt><dd><div class="bk_ref" id="niceng206er2.ref110">Reynolds
|
||
F, Vivat
|
||
B. Art-making and identity work: A qualitative study of women living with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). Arts & Health: An International Journal of Research, Policy and Practice. 2010; 2(1):67–80</div></dd><dt>111.</dt><dd><div class="bk_ref" id="niceng206er2.ref111">Reynolds
|
||
F, Vivat
|
||
B. Narratives of art-making in chronic fatigue syndrome/myalgic encephalomyelitis: Three case studies. The Arts in Psychotherapy. 2006; 33(5):435–445</div></dd><dt>112.</dt><dd><div class="bk_ref" id="niceng206er2.ref112">Reynolds
|
||
F, Vivat
|
||
B, Prior
|
||
S. Women’s experiences of increasing subjective well-being in CFS/ME through leisure-based arts and crafts activities: A qualitative study. Disability and Rehabilitation. 2008; 30(17):1279–1288 [<a href="https://pubmed.ncbi.nlm.nih.gov/18821193" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 18821193</span></a>]</div></dd><dt>113.</dt><dd><div class="bk_ref" id="niceng206er2.ref113">Richards
|
||
J, Chaplin
|
||
R, Starkey
|
||
C, Turk
|
||
J. Illness beliefs in chronic fatigue syndrome: A study involving affected adolescents and their parents. Child and Adolescent Mental Health. 2006; 11(4):198–203 [<a href="https://pubmed.ncbi.nlm.nih.gov/32810979" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 32810979</span></a>]</div></dd><dt>114.</dt><dd><div class="bk_ref" id="niceng206er2.ref114">Richards
|
||
J, Smith
|
||
F. Chronic fatigue syndrome in children and adolescents: General practitioners’ experience of the problem and their views about its treatment. Psychiatric Bulletin. 1998; 22(4):203–206</div></dd><dt>115.</dt><dd><div class="bk_ref" id="niceng206er2.ref115">Ryckeghem
|
||
H, Delesie
|
||
L, Tobback
|
||
E, Lievens
|
||
S, Vogelaers
|
||
D, Mariman
|
||
A. Exploring the potential role of the advanced nurse practitioner within a care path for patients with chronic fatigue syndrome. Journal of Advanced Nursing. 2017; 73(7):1610–1619 [<a href="https://pubmed.ncbi.nlm.nih.gov/28000331" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 28000331</span></a>]</div></dd><dt>116.</dt><dd><div class="bk_ref" id="niceng206er2.ref116">Sachs
|
||
L. From a lived body to a medicalized body: diagnostic transformation and chronic fatigue syndrome. Medical Anthropology. 2001; 19(4):299–317 [<a href="https://pubmed.ncbi.nlm.nih.gov/11800317" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 11800317</span></a>]</div></dd><dt>117.</dt><dd><div class="bk_ref" id="niceng206er2.ref117">Saltzstein
|
||
BJ, Wyshak
|
||
G, Hubbuch
|
||
JT, Perry
|
||
JC. A naturalistic study of the chronic fatigue syndrome among women in primary care. General Hospital Psychiatry. 1998; 20(5):307–316 [<a href="https://pubmed.ncbi.nlm.nih.gov/9788031" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 9788031</span></a>]</div></dd><dt>118.</dt><dd><div class="bk_ref" id="niceng206er2.ref118">Schoofs
|
||
N, Bambini
|
||
D, Ronning
|
||
P, Bielak
|
||
E, Woehl
|
||
J. Death of a lifestyle: The effects of social support and healthcare support on the quality of life of persons with fibromyalgia and/or chronic fatigue syndrome. Orthopaedic Nursing. 2004; 23(6):364–374 [<a href="https://pubmed.ncbi.nlm.nih.gov/15682879" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 15682879</span></a>]</div></dd><dt>119.</dt><dd><div class="bk_ref" id="niceng206er2.ref119">Sidi-Ali-Mebarek
|
||
B. Role of relationship impact on chronic fatigue syndrome: A qualitative inquiry. San Diego, CA. Alliant International University. 2009</div></dd><dt>120.</dt><dd><div class="bk_ref" id="niceng206er2.ref120">Snell
|
||
CR, Stevens
|
||
SR, VanNess
|
||
JM. Chronic fatigue syndrome, ampligen, and quality of life: A phenomenological perspective. Journal of Chronic Fatigue Syndrome. 2001; 8(3–4):117–121</div></dd><dt>121.</dt><dd><div class="bk_ref" id="niceng206er2.ref121">Soderlund
|
||
A, Malterud
|
||
K. Why did I get chronic fatigue syndrome? A qualitative interview study of causal attributions in women patients. Scandinavian Journal of Primary Health Care. 2005; 23(4):242–247 [<a href="https://pubmed.ncbi.nlm.nih.gov/16272074" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 16272074</span></a>]</div></dd><dt>122.</dt><dd><div class="bk_ref" id="niceng206er2.ref122">Soderlund
|
||
A, Skoge
|
||
AM, Malterud
|
||
K. “I could not lift my arm holding the fork…”. Living with chronic fatigue syndrome. Scandinavian Journal of Primary Health Care. 2000; 18(3):165–169 [<a href="https://pubmed.ncbi.nlm.nih.gov/11097102" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 11097102</span></a>]</div></dd><dt>123.</dt><dd><div class="bk_ref" id="niceng206er2.ref123">Son
|
||
HM, Park
|
||
EY, Kim
|
||
DH, Kim
|
||
E, Shin
|
||
MS, Kim
|
||
TH. Experiences with, perceptions of and attitudes towards traditional Korean medicine (TKM) in patients with chronic fatigue: a qualitative, one-on-one, in-depth interview study. BMJ Open. 2015; 5(9):e006178 [<a href="/pmc/articles/PMC4563217/" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC4563217</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/26351179" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 26351179</span></a>]</div></dd><dt>124.</dt><dd><div class="bk_ref" id="niceng206er2.ref124">Stenhoff
|
||
AL, Sadreddini
|
||
S, Peters
|
||
S, Wearden
|
||
A. Understanding medical students’ views of chronic fatigue syndrome: A qualitative study. Journal of Health Psychology. 2015; 20(2):198–209 [<a href="https://pubmed.ncbi.nlm.nih.gov/24058124" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 24058124</span></a>]</div></dd><dt>125.</dt><dd><div class="bk_ref" id="niceng206er2.ref125">Stormorken
|
||
E, Jason
|
||
LA, Kirkevold
|
||
M. Fatigue in adults with post-infectious fatigue syndrome: A qualitative content analysis. BMC Nursing. 2015; 14:64 [<a href="/pmc/articles/PMC4662830/" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC4662830</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/26617466" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 26617466</span></a>]</div></dd><dt>126.</dt><dd><div class="bk_ref" id="niceng206er2.ref126">Sturge-Jacobs
|
||
M. The experience of living with fibromyalgia: Confronting an invisible disability. Research and Theory for Nursing Practice. 2002; 16(1):19–31 [<a href="https://pubmed.ncbi.nlm.nih.gov/12371466" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 12371466</span></a>]</div></dd><dt>127.</dt><dd><div class="bk_ref" id="niceng206er2.ref127">Sunnquist
|
||
M, Nicholson
|
||
L, Jason
|
||
LA, Friedman
|
||
KJ. Access to medical care for individuals with myalgic encephalomyelitis and chronic fatigue syndrome: a call for centers of excellence. Modern Clinical Medicine Research. 2017; 1(1):28–35 [<a href="/pmc/articles/PMC5510655/" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC5510655</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/28713878" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 28713878</span></a>]</div></dd><dt>128.</dt><dd><div class="bk_ref" id="niceng206er2.ref128">Swoboda
|
||
DA. The social construction of contested illness legitimacy: A grounded theory analysis. Qualitative Research in Psychology. 2006; 3(3):233–251</div></dd><dt>129.</dt><dd><div class="bk_ref" id="niceng206er2.ref129">Taylor
|
||
AK, Loades
|
||
M, Brigden
|
||
AL, Collin
|
||
SM, Crawley
|
||
E. ‘It’s personal to me’: A qualitative study of depression in young people with CFS/ME. Clinical Child Psychology and Psychiatry. 2017; 22(2):326–340 [<a href="/pmc/articles/PMC5405821/" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC5405821</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/27742756" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 27742756</span></a>]</div></dd><dt>130.</dt><dd><div class="bk_ref" id="niceng206er2.ref130">Taylor
|
||
RR. Can the social model explain all of disability experience? Perspectives of persons with chronic fatigue syndrome. American Journal of Occupational Therapy. 2005; 59(5):497–506 [<a href="https://pubmed.ncbi.nlm.nih.gov/16268016" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 16268016</span></a>]</div></dd><dt>131.</dt><dd><div class="bk_ref" id="niceng206er2.ref131">Tevens
|
||
WE. Enigmatic illness and the wounded self: A study of women with fibromyalgia and chronic fatigue syndromes. Canada. University of Toronto. 2004</div></dd><dt>132.</dt><dd><div class="bk_ref" id="niceng206er2.ref132">Theorell
|
||
T, Blomkvist
|
||
V, Lindh
|
||
G, Evengard
|
||
B. Critical life events, infections, and symptoms during the year preceding chronic fatigue syndrome (CFS): An examination of CFS patients and subjects with a nonspecific life crisis. Psychosomatic Medicine. 1999; 61(3):304–310 [<a href="https://pubmed.ncbi.nlm.nih.gov/10367610" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 10367610</span></a>]</div></dd><dt>133.</dt><dd><div class="bk_ref" id="niceng206er2.ref133">Travers
|
||
MK, Lawler
|
||
J. Self within a climate of contention: Experiences of chronic fatigue syndrome. Social Science and Medicine. 2008; 66(2):315–326 [<a href="https://pubmed.ncbi.nlm.nih.gov/17961894" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 17961894</span></a>]</div></dd><dt>134.</dt><dd><div class="bk_ref" id="niceng206er2.ref134">Tuck
|
||
I, Human
|
||
N. The experience of living with chronic fatigue syndrome. Journal of Psychosocial Nursing and Mental Health Services. 1998; 36(2):15–19 [<a href="https://pubmed.ncbi.nlm.nih.gov/9498175" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 9498175</span></a>]</div></dd><dt>135.</dt><dd><div class="bk_ref" id="niceng206er2.ref135">Tuck
|
||
I, Wallace
|
||
D. Chronic fatigue syndrome: A woman’s dilemma. Health Care for Women International. 2000; 21(5):457–466 [<a href="https://pubmed.ncbi.nlm.nih.gov/11261112" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 11261112</span></a>]</div></dd><dt>136.</dt><dd><div class="bk_ref" id="niceng206er2.ref136">Velleman
|
||
S, Collin
|
||
SM, Beasant
|
||
L, Crawley
|
||
E. Psychological wellbeing and quality-of-life among siblings of paediatric CFS/ME patients: A mixed-methods study. Clinical Child Psychology and Psychiatry. 2016; 21(4):618–633 [<a href="/pmc/articles/PMC5094299/" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC5094299</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/26395764" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 26395764</span></a>]</div></dd><dt>137.</dt><dd><div class="bk_ref" id="niceng206er2.ref137">Ward
|
||
T, Hogan
|
||
K, Stuart
|
||
V, Singleton
|
||
E. The experiences of counselling for persons with ME. Counselling & Psychotherapy Research. 2008; 8(2):73–79</div></dd><dt>138.</dt><dd><div class="bk_ref" id="niceng206er2.ref138">Ware
|
||
NC. Society, mind and body in chronic fatigue syndrome: an anthropological view. Ciba Foundation Symposium. 1993; 173:62–73; discussion 73-82 [<a href="https://pubmed.ncbi.nlm.nih.gov/8491108" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 8491108</span></a>]</div></dd><dt>139.</dt><dd><div class="bk_ref" id="niceng206er2.ref139">Ware
|
||
NC. Sociosomatics and illness in chronic fatigue syndrome. Psychosomatic Medicine. 1998; 60(4):394–401 [<a href="https://pubmed.ncbi.nlm.nih.gov/9710284" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 9710284</span></a>]</div></dd><dt>140.</dt><dd><div class="bk_ref" id="niceng206er2.ref140">Ware
|
||
NC. Toward a model of social course in chronic illness: The example of chronic fatigue syndrome. Culture, Medicine, and Psychiatry: An International Journal of Cross-Cultural Health Research. 1999; 23(3):303–331 [<a href="https://pubmed.ncbi.nlm.nih.gov/10572737" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 10572737</span></a>]</div></dd><dt>141.</dt><dd><div class="bk_ref" id="niceng206er2.ref141">Webb
|
||
CM, Collin
|
||
SM, Deave
|
||
T, Haig-Ferguson
|
||
A, Spatz
|
||
A, Crawley
|
||
E. What stops children with a chronic illness accessing health care: A mixed methods study in children with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). BMC Health Services Research. 2011; 11:308 [<a href="/pmc/articles/PMC3228771/" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC3228771</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/22078101" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 22078101</span></a>]</div></dd><dt>142.</dt><dd><div class="bk_ref" id="niceng206er2.ref142">Whitehead
|
||
L. Toward a trajectory of identity reconstruction in chronic fatigue syndrome/myalgic encephalomyelitis: A longitudinal qualitative study. International Journal of Nursing Studies. 2006; 43(8):1023–1031 [<a href="https://pubmed.ncbi.nlm.nih.gov/16527282" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 16527282</span></a>]</div></dd><dt>143.</dt><dd><div class="bk_ref" id="niceng206er2.ref143">Whitehead
|
||
LC. Quest, chaos and restitution: Living with chronic fatigue syndrome/myalgic encephalomyelitis. Social Science and Medicine. 2006; 62(9):2236–2245 [<a href="https://pubmed.ncbi.nlm.nih.gov/16236413" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 16236413</span></a>]</div></dd><dt>144.</dt><dd><div class="bk_ref" id="niceng206er2.ref144">Williams
|
||
AM, Christopher
|
||
G, Jenkinson
|
||
E. The psychological impact of dependency in adults with chronic fatigue syndrome/myalgic encephalomyelitis: A qualitative exploration. Journal of Health Psychology. 2016; 24(2):264–275 [<a href="https://pubmed.ncbi.nlm.nih.gov/27098385" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 27098385</span></a>]</div></dd><dt>145.</dt><dd><div class="bk_ref" id="niceng206er2.ref145">Wilson
|
||
L, Whitehead
|
||
L, Burrell
|
||
B. Learning to live well with chronic fatigue: the personal perspective. Journal of Advanced Nursing. 2011; 67(10):2161–2169 [<a href="https://pubmed.ncbi.nlm.nih.gov/21711464" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 21711464</span></a>]</div></dd><dt>146.</dt><dd><div class="bk_ref" id="niceng206er2.ref146">Winger
|
||
A, Ekstedt
|
||
M, Wyller
|
||
VB, Helseth
|
||
S. ‘Sometimes it feels as if the world goes on without me’: Adolescents’ experiences of living with chronic fatigue syndrome. Journal of Clinical Nursing. 2014; 23(17–18):2649–2657 [<a href="https://pubmed.ncbi.nlm.nih.gov/24354631" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 24354631</span></a>]</div></dd><dt>147.</dt><dd><div class="bk_ref" id="niceng206er2.ref147">Woodward
|
||
RV, Broom
|
||
DH, Legge
|
||
DG. Diagnosis in chronic illness: disabling or enabling--the case of chronic fatigue syndrome. Journal of the Royal Society of Medicine. 1995; 88(6):325–329 [<a href="/pmc/articles/PMC1295234/" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC1295234</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/7629762" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 7629762</span></a>]</div></dd></dl></div><div class="bk_prnt_sctn"><h2>Figures</h2><div class="whole_rhythm bk_prnt_obj bk_first_prnt_obj"><div id="niceng206er2.fig1" class="figure bk_fig"><div class="graphic"><a href="/core/lw/2.0/html/tileshop_pmc/tileshop_pmc_inline.html?title=Figure%201.%20Theme%20map%20of%20review%20findings.&p=BOOKS&id=589852_niceng206er2f1.jpg" target="tileshopwindow" class="inline_block pmc_inline_block ts_canvas img_link" title="Click on image to zoom"><div class="ts_bar small" title="Click on image to zoom"></div><img src="/books/NBK589852/bin/niceng206er2f1.jpg" alt="Figure 1. Theme map of review findings." class="tileshop" title="Click on image to zoom" /></a></div><h3><span class="label">Figure 1</span><span class="title">Theme map of review findings</span></h3><p>Source/Note: No additional themes identified in children/young people that differed from those identified in adults.</p></div></div><div class="whole_rhythm bk_prnt_obj"><div id="niceng206er2.fig2" class="figure bk_fig"><div class="graphic"><a href="/core/lw/2.0/html/tileshop_pmc/tileshop_pmc_inline.html?title=Figure%202.%20Theme%20map%20of%20review%20findings%20(adults).&p=BOOKS&id=589852_niceng206er2f2.jpg" target="tileshopwindow" class="inline_block pmc_inline_block ts_canvas img_link" title="Click on image to zoom"><div class="ts_bar small" title="Click on image to zoom"></div><img src="/books/NBK589852/bin/niceng206er2f2.jpg" alt="Figure 2. Theme map of review findings (adults)." class="tileshop" title="Click on image to zoom" /></a></div><h3><span class="label">Figure 2</span><span class="title">Theme map of review findings (adults)</span></h3><p>Source/Note: Some themes could be considered barriers or facilitators to providing information, education and support depending on their presence/absence, e.g. ability of people with ME/CFS to engage with health care services.</p></div></div><div class="whole_rhythm bk_prnt_obj"><div id="niceng206er2.fig3" class="figure bk_fig"><div class="graphic"><a href="/core/lw/2.0/html/tileshop_pmc/tileshop_pmc_inline.html?title=Figure%203.%20Theme%20map%20of%20review%20findings%20(children%2Fyoung%20people).&p=BOOKS&id=589852_niceng206er2f3.jpg" target="tileshopwindow" class="inline_block pmc_inline_block ts_canvas img_link" title="Click on image to zoom"><div class="ts_bar small" title="Click on image to zoom"></div><img src="/books/NBK589852/bin/niceng206er2f3.jpg" alt="Figure 3. Theme map of review findings (children/young people)." class="tileshop" title="Click on image to zoom" /></a></div><h3><span class="label">Figure 3</span><span class="title">Theme map of review findings (children/young people)</span></h3><p>Source/Note: Only additional themes identified in children/young people that differed from those identified in adults are displayed here.</p></div></div><div class="whole_rhythm bk_prnt_obj"><div id="niceng206er2.fig4" class="figure bk_fig"><div class="graphic"><a href="/core/lw/2.0/html/tileshop_pmc/tileshop_pmc_inline.html?title=Figure%204.%20Map%20of%20overlapping%20themes%20in%20the%20review%20findings.&p=BOOKS&id=589852_niceng206er2f4.jpg" target="tileshopwindow" class="inline_block pmc_inline_block ts_canvas img_link" title="Click on image to zoom"><div class="ts_bar small" title="Click on image to zoom"></div><img src="/books/NBK589852/bin/niceng206er2f4.jpg" alt="Figure 4. Map of overlapping themes in the review findings." class="tileshop" title="Click on image to zoom" /></a></div><h3><span class="label">Figure 4</span><span class="title">Map of overlapping themes in the review findings</span></h3></div></div></div><div class="bk_prnt_sctn"><h2>Tables</h2><div class="whole_rhythm bk_prnt_obj bk_first_prnt_obj"><div id="niceng206er2.tab1" class="table"><h3><span class="label">Table 1</span><span class="title">Characteristics of review question</span></h3><p class="large-table-link" style="display:none"><span class="right"><a href="/books/NBK589852/table/niceng206er2.tab1/?report=objectonly" target="object">View in own window</a></span></p><div class="large_tbl" id="__niceng206er2.tab1_lrgtbl__"><table><tbody><tr><th id="hd_b_niceng206er2.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Objective</th><td headers="hd_b_niceng206er2.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">To identify the information, education and support required by health and social care professionals caring for people with or who are suspected of having ME/CFS.</td></tr><tr><th id="hd_b_niceng206er2.tab1_1_1_2_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Population and setting</th><td headers="hd_b_niceng206er2.tab1_1_1_2_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
||
<ul><li class="half_rhythm"><div>Health and social care professionals caring for someone with or who are suspected of having ME/CFS.</div></li><li class="half_rhythm"><div>Perspectives of people with ME/CFS and the families and carers of people with ME/CFS about the information, education and support needs of health and social care professionals who provide care.</div></li></ul></td></tr><tr><th id="hd_b_niceng206er2.tab1_1_1_3_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Context</th><td headers="hd_b_niceng206er2.tab1_1_1_3_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Perceptions from health care professionals and people with or who are suspected of having ME/CFS about the information, education and support needed by health care and social care professionals.</td></tr><tr><th id="hd_b_niceng206er2.tab1_1_1_4_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Review strategy</th><td headers="hd_b_niceng206er2.tab1_1_1_4_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Synthesis of qualitative research, following a thematic analysis approach. Results presented in narrative and in table format with summary statements of main review findings. Quality of the evidence will be assessed by a GRADE CerQual approach for each review finding.</td></tr></tbody></table></div></div></div><div class="whole_rhythm bk_prnt_obj"><div id="niceng206er2.tab2" class="table"><h3><span class="label">Table 2</span><span class="title">Summary of studies included in the review</span></h3><p class="large-table-link" style="display:none"><span class="right"><a href="/books/NBK589852/table/niceng206er2.tab2/?report=objectonly" target="object">View in own window</a></span></p><div class="large_tbl" id="__niceng206er2.tab2_lrgtbl__"><table><thead><tr><th id="hd_h_niceng206er2.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Study</th><th id="hd_h_niceng206er2.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Design</th><th id="hd_h_niceng206er2.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Population</th><th id="hd_h_niceng206er2.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Research aim</th><th id="hd_h_niceng206er2.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Comments</th></tr></thead><tbody><tr><td headers="hd_h_niceng206er2.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Beaulieu 2000<a class="bk_pop" href="#niceng206er2.ref19"><sup>19</sup></a></td><td headers="hd_h_niceng206er2.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Mixture of structured and semi structured questions, analysed using thematic analysis.</td><td headers="hd_h_niceng206er2.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
||
<p>Health professionals including general practitioners, mental health professionals (one of whom was not a physician), infectious disease specialists, immunologists and rheumatologists, recruited following identification by people with ‘CFS’ participating in the study.</p>
|
||
<p>N=15; male/female 10/5; had been in practice from six to seventeen years and individually had seen from six to almost one hundred cases.</p>
|
||
<p>People who were English-speaking and who had a diagnosis of ‘CFS’ from a medical doctor, recruited from physicians’ practices, support groups and identified by leaders of associations.</p>
|
||
<p>N=43; male/female 16/27; 26% were in school or working full or part time; mean age at onset was 34.2 years (range 15 to 58 years); people had been ill for an average of seven years.</p>
|
||
<p>Significant others including friends, parents, spouses, adult children, and a sibling, recruited following identification by people with ‘CFS’ participating in the study.</p>
|
||
<p>N=23; male/female not reported; 69% were working.</p>
|
||
<p>Canada</p>
|
||
<p>Stratum: adults/mixed population</p>
|
||
</td><td headers="hd_h_niceng206er2.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">To examine multiple perspectives on stigmatization and legitimation of ‘CFS’.</td><td headers="hd_h_niceng206er2.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"></td></tr><tr><td headers="hd_h_niceng206er2.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Broughton 2017<a class="bk_pop" href="#niceng206er2.ref24"><sup>24</sup></a></td><td headers="hd_h_niceng206er2.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
||
<p>Semi-structured interviews (six face-to-face, 10 via telephone) and thematic analysis.</p>
|
||
<p>Cross-sectional design using opportunity sampling.</p>
|
||
</td><td headers="hd_h_niceng206er2.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
||
<p>Adults who were completing treatment for ME/CFS at one of three outpatient NHS specialist ‘CFS/ME’ services.</p>
|
||
<p>N=16; 87.5% female, 12.5% male. Median age of participants: 43 (range 24-62). Median self-reported duration of illness: 7.5 years (range 1-17). The sample was representative of patients treated by the 3 services during 2014 (median age 40, 81% female), except for longer duration of illness.</p>
|
||
<p>UK</p>
|
||
<p>Stratum: adults/mixed population</p>
|
||
</td><td headers="hd_h_niceng206er2.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">To explore the experiences of ‘CFS/ME’ patients who were completing programmes of treatment at three NHS specialist ‘CFS/ME’ services in England.</td><td headers="hd_h_niceng206er2.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">NHS specialist ‘CFS/ME’ services followed NICE guidelines for diagnosis and management of ‘CFS/ME’, offering patient centred programmes aiming to increase patients’ physical, emotional and cognitive capabilities whilst managing the impact of symptoms. Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) are the two main evidence-based therapies which (or components of which) are used in conjunction with techniques aimed at managing activity, sleep hygiene and relaxation. Patients also receive practical support around employment and the benefits system. Services shared a philosophy of rehabilitation aimed at ‘recovery’ or ‘significant improvement’, whilst acknowledging that this would not be attained by all patients.</td></tr><tr><td headers="hd_h_niceng206er2.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Chew-Graham 2008<a class="bk_pop" href="#niceng206er2.ref31"><sup>31</sup></a></td><td headers="hd_h_niceng206er2.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Semi-structured interviews and thematic analysis</td><td headers="hd_h_niceng206er2.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
||
<p>Family physicians (n=14; mean age: 48, SD: 12 years) and patients (n=24; mean age: 48, SD: 12 years) participating in a RCT of 2 nurse-led interventions in primary care (FINE trial)</p>
|
||
<p>UK</p>
|
||
<p>Stratum: adults/mixed population</p>
|
||
</td><td headers="hd_h_niceng206er2.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">To explore how patients with ‘CFS/ME’ and family physicians conceptualise and understand this condition and how their understanding might affect the primary care consultation.</td><td headers="hd_h_niceng206er2.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">FINE trial was a primary-care-based RCT examining self-help treatment and pragmatic rehabilitation for patients with ME/CFS.</td></tr><tr><td headers="hd_h_niceng206er2.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Chew-Graham 2010<a class="bk_pop" href="#niceng206er2.ref30"><sup>30</sup></a></td><td headers="hd_h_niceng206er2.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Semi-structured interviews and thematic analysis (using an iterative approach).</td><td headers="hd_h_niceng206er2.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
||
<p>GPs working in practices participating in the FINE trial (n=22).</p>
|
||
<p>UK</p>
|
||
<p>Stratum: adults/mixed population</p>
|
||
</td><td headers="hd_h_niceng206er2.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">To explore GPs’ beliefs about the value of the label of ‘CFS/ME’, implications of the diagnosis and attitudes towards patients with this condition.</td><td headers="hd_h_niceng206er2.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
||
<p>FINE trial was a primary-care RCT examining self-help treatment and pragmatic rehabilitation for patients with ME/CFS.</p>
|
||
<p>To be included in the trial, registered patients with ‘CFS/ME’ referred by physicians in 44 primary care trusts in North West England, had to fulfil the Oxford inclusion criteria for ‘CFS/ME’, score 70% or less on the SF-36 physical functioning scale and 4 or more on the 11-item Chalder fatigue scale.</p>
|
||
</td></tr><tr><td headers="hd_h_niceng206er2.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Devendorf 2017<a class="bk_pop" href="#niceng206er2.ref41"><sup>41</sup></a></td><td headers="hd_h_niceng206er2.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Semi-structured interviews and (deductive) thematic analysis.</td><td headers="hd_h_niceng206er2.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
||
<p>Mixed sample of people with different specialties, working with adults and children and adolescents.</p>
|
||
<p>Physicians who were experts in the ME and CFS field (n=10); mean age (SD): 65 (12) years.</p>
|
||
<p>USA</p>
|
||
<p>Stratum: adults/mixed population</p>
|
||
</td><td headers="hd_h_niceng206er2.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">To explore views of physicians with expertise in ‘ME and CFS’ to define and measure recovery from ‘ME and CFS’</td><td headers="hd_h_niceng206er2.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Experts were determined by their ‘ME and CFS’ patient experience, research contributions, and overall involvement in the field (e.g. running ‘ME and CFS ‘specialty clinics, participating on committees.</td></tr><tr><td headers="hd_h_niceng206er2.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Devendorf 2019<a class="bk_pop" href="#niceng206er2.ref40"><sup>40</sup></a></td><td headers="hd_h_niceng206er2.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">sSemi-structured phone-based interviews with physicians and analysing the data using deductive thematic analysis.</td><td headers="hd_h_niceng206er2.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
||
<p>Physicians specialising in ME/CFS of diverse medical specialties (n=10) and other physicians (n=3), not identified as ME/CFS specialists. n=13, males: 9, females: 4; mean age 60 years. For years in practice, three physicians had 30 or more years, seven had 20-29 years, one had 10-19 years and two had 1-9 years of medical experience.</p>
|
||
<p>USA</p>
|
||
<p>Stratum: adults/mixed population</p>
|
||
</td><td headers="hd_h_niceng206er2.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">To explore physicians views on the challenges to studying and approaching recovery, to examine these challenges in-depth and provide recommendations that will improve how researchers and practitioners approach the study and quantification of ME and CFS recovery.</td><td headers="hd_h_niceng206er2.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
||
<p>Participants were recruited via nonprobabilistic, purposive sampling. Specialists were defined by their extensive patient experience, research contributions and significant involvement in the field.</p>
|
||
<p>The sample was diverse in their medical specialties: epidemiology (n=1), geriatrics (n=1), infectious diseases (n=1), neurology (n=1), internal medicine (n=2), psychiatry (n=2), general medicine (n=3), and paediatrics (n=5); three physicians identified with two medical specialties.</p>
|
||
</td></tr><tr><td headers="hd_h_niceng206er2.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Devendorf 2018<a class="bk_pop" href="#niceng206er2.ref42"><sup>42</sup></a></td><td headers="hd_h_niceng206er2.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Mixed-methods design; qualitative analysis of participants’ open-ended survey responses from a previous project that examined illness severity, stigma, physician interactions and depression.</td><td headers="hd_h_niceng206er2.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
||
<p>Patients who self-identify as having ME/CFS and endorsed suicidal ideation (SI) but did not meet depression criteria.</p>
|
||
<p>N=29; 79.3% female, 20.7% male. Mean age: 51.48 years old. Mean score for the BDI-PC: 2.38; one participant endorsed active SI (i.e. score of 3), 28 participants endorsed passive SI (i.e. score of 1).</p>
|
||
<p>USA</p>
|
||
<p>Stratum: adults/mixed population</p>
|
||
</td><td headers="hd_h_niceng206er2.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">An exploratory study to explore the relationship between ME/CFS and suicidal ideations, including quality of life, loss of function, isolation and hopelessness.</td><td headers="hd_h_niceng206er2.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"></td></tr><tr><td headers="hd_h_niceng206er2.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Edwards 2007<a class="bk_pop" href="#niceng206er2.ref45"><sup>45</sup></a></td><td headers="hd_h_niceng206er2.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Interpretative phenomenological analysis of semi-structured interviews.</td><td headers="hd_h_niceng206er2.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
||
<p>People diagnosed with ME/CFS by a medical professional.</p>
|
||
<p>N=8; all women. Age range: 37-55 years. Illness duration range: 18 months to 12 years. Inclusion criteria: over 18 years of age, speak English as a first language, diagnosed with ME/CFS by a medical professional, have suffered ME/CFS symptoms for at least one year, consider ME/CFS as their main health problem, and currently experiencing symptoms of at least moderate severity. All but one had stopped working due to ME/CFS.</p>
|
||
<p>UK</p>
|
||
<p>Stratum: adults/mixed population</p>
|
||
</td><td headers="hd_h_niceng206er2.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">To explore the experiences and difficulties of people living with ME/CFS.</td><td headers="hd_h_niceng206er2.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"></td></tr><tr><td headers="hd_h_niceng206er2.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Hannon 2012<a class="bk_pop" href="#niceng206er2.ref57"><sup>57</sup></a></td><td headers="hd_h_niceng206er2.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Semi-structured interviews and grounded theory approach.</td><td headers="hd_h_niceng206er2.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
||
<p>Health practitioners (GPs n=9, practice nurses n=5, ‘CFS/ME’ specialists n=4), Carers (n=10), patients (n=16), aged 28-71</p>
|
||
<p>UK</p>
|
||
<p>Stratum: adults/mixed population</p>
|
||
</td><td headers="hd_h_niceng206er2.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">To develop an education and training intervention to support practitioners in making an early diagnosis of ‘CFS/ME’ and supporting patients in the management of their symptoms.</td><td headers="hd_h_niceng206er2.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"></td></tr><tr><td headers="hd_h_niceng206er2.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Horton 2010<a class="bk_pop" href="#niceng206er2.ref66"><sup>66</sup></a></td><td headers="hd_h_niceng206er2.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Semi-structured interviews and thematic analysis.</td><td headers="hd_h_niceng206er2.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
||
<p>Health care professionals (HCP) who had been nominated by people with ME/CFS who had taken part in an associated England-wide study of their support needs.</p>
|
||
<p>N=6; gender not reported. Three participants were from specialist services (medicine, occupational therapy, physiotherapy) and three were from non-specialist services (medicine, occupational health, holistic practice). 36 people with ME/CFS nominated eight HCPs as having provided them with particularly helpful or effective care and six agreed to participate. One HCP was named by six different people with ME/CFS.</p>
|
||
<p>UK</p>
|
||
<p>Stratum: adults/mixed population</p>
|
||
</td><td headers="hd_h_niceng206er2.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">To explore the nature of professional ‘best practice’ in working with people with ME/CFS.</td><td headers="hd_h_niceng206er2.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"></td></tr><tr><td headers="hd_h_niceng206er2.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Jelbert 2010<a class="bk_pop" href="#niceng206er2.ref68"><sup>68</sup></a></td><td headers="hd_h_niceng206er2.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Semi-structured interviews and thematic analysis (interpretative phenomenological analysis).</td><td headers="hd_h_niceng206er2.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
||
<p>Five adolescents who were considered to have recovered from ME/CFS.</p>
|
||
<p>N=5; 4 female, 1 male. Mean age: 15.2 years (range 13-18 years). Only adolescents who had been discharged within the last year were included. All participants reported having experienced ME/CFS symptoms for a duration of between 1.5 and 2 years.</p>
|
||
<p>UK</p>
|
||
<p>Stratum: children and young people</p>
|
||
</td><td headers="hd_h_niceng206er2.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">To gain an understanding of adolescents’ illness experiences of ME/CFS, from its beginning to its end, to identify themes that have implications for clinical practice and raise further questions for formal investigation in quantitative studies.</td><td headers="hd_h_niceng206er2.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Adolescents were chosen on the basis of having met diagnostic criteria for CFS as assessed by a consultant paediatrician in the paediatric outpatient clinic the study took place.</td></tr><tr><td headers="hd_h_niceng206er2.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Marks 2016<a class="bk_pop" href="#niceng206er2.ref84"><sup>84</sup></a></td><td headers="hd_h_niceng206er2.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Semi-structured interviews and thematic analysis (grounded theory methodology).</td><td headers="hd_h_niceng206er2.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
||
<p>Paediatricians, physiotherapists and clinical psychologists working in two NHS organisations in the UK: a hospital outpatient paediatric service, and a specialist centre providing inpatient and outpatient care for young people ME/CFS.</p>
|
||
<p>N=10; 7 female, 3 male. Mean age not stated. Medical specialties were as follows: paediatricians (n=4), physiotherapists (n=3), and clinical psychologists (n=3). All had a minimum of 3 years’ experience of working with ≥3 young people with ME/CFS.</p>
|
||
<p>UK</p>
|
||
<p>Stratum: children and young people</p>
|
||
</td><td headers="hd_h_niceng206er2.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">To explore HCPs experiences of working with children and adolescents with ME/CFS so as to develop an understanding of the processes relating to how they understand the condition.</td><td headers="hd_h_niceng206er2.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"></td></tr><tr><td headers="hd_h_niceng206er2.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Raine 2004<a class="bk_pop" href="#niceng206er2.ref106"><sup>106</sup></a></td><td headers="hd_h_niceng206er2.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Qualitative analysis of transcripts of facilitated group discussions.</td><td headers="hd_h_niceng206er2.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
||
<p>General practitioners randomly selected from the Department of Health’s general practitioner database.</p>
|
||
<p>N=46; male/female 29/17; mean age 46.9 years; had worked for an average of 14.8 years in general practice, and 9 were affiliated to a medical school.</p>
|
||
<p>UK</p>
|
||
<p>Stratum: adults/mixed population</p>
|
||
</td><td headers="hd_h_niceng206er2.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">To compare general practitioners’ perceptions of chronic fatigue syndrome and irritable bowel syndrome and to consider the implications of their perceptions for the use of psychological treatments.</td><td headers="hd_h_niceng206er2.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"></td></tr><tr><td headers="hd_h_niceng206er2.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Ryckeghem 2017<a class="bk_pop" href="#niceng206er2.ref115"><sup>115</sup></a></td><td headers="hd_h_niceng206er2.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Semi-structured interviews using open explorative thematic coding (thematic analysis).</td><td headers="hd_h_niceng206er2.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
||
<p>A purposive sample of patients was selected through the department of General Internal Medicine at the University Hospital Ghent to achieve maximum variation.</p>
|
||
<p>A convenience sample of GPs was recruited from different provinces in Belgium.</p>
|
||
<p>Patients (n=15); median age (range): 45 (33-59 years); GPs (n=15); median age (range): 49 (31-62 years).</p>
|
||
<p>Belgium</p>
|
||
<p>Stratum: adults/mixed population</p>
|
||
</td><td headers="hd_h_niceng206er2.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">To explore the experiences and expectations of ‘CFS’ patients and GPs to develop the potential role of an advanced nurse practitioner (ANP) at the diagnostic care path of abnormal fatigue developed for regional transmural implementation in the Belgian provinces of East and West Flanders.</td><td headers="hd_h_niceng206er2.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">A definitive diagnosis was established following a multi-disciplinary discussion in the diagnostic process.</td></tr><tr><td headers="hd_h_niceng206er2.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Stenhoff 2015<a class="bk_pop" href="#niceng206er2.ref124"><sup>124</sup></a></td><td headers="hd_h_niceng206er2.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Face-to-face semi-structured interviews and inductive thematic analysis.</td><td headers="hd_h_niceng206er2.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
||
<p>Undergraduate medical students in years 3, 4 and 5 at the University of Manchester, UK.</p>
|
||
<p>N=21; 7 female, 14 male. Mean age: 22 years old. Four were third-year students, 11 were fourth-year students and six were fifth (final)-year students. Participants were recruited through the university’s student-net, poster adverts around campus and via personal contact. Sampling ended at saturation in a staged approach, with two students turned away at the end of the study.</p>
|
||
<p>UK</p>
|
||
<p>Stratum: adults/mixed population</p>
|
||
</td><td headers="hd_h_niceng206er2.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">To investigate medical students’ beliefs, attitudes and knowledge of ME/CFS.</td><td headers="hd_h_niceng206er2.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"></td></tr><tr><td headers="hd_h_niceng206er2.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Taylor 2005<a class="bk_pop" href="#niceng206er2.ref130"><sup>130</sup></a></td><td headers="hd_h_niceng206er2.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Focus group interviews, open-ended questionnaires, progress notes, and from a program evaluation questionnaire.</td><td headers="hd_h_niceng206er2.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
||
<p>Adults with ME/CFS meeting the Fukuda criteria for CFS, who were participating in a research project aimed to evaluate a participant-designed rehabilitation program.</p>
|
||
<p>N=47; 45 female, 2 male. Mean age: 46.9 years (SD 10.4). Seven participants were in full-time work, seven in part-time work and 33 were not working. Eight participants were minority ethnicity, 39 were non-minority. All participants met the CDC Fukuda <i>et al</i> (1994) criteria for ME/CFS.</p>
|
||
<p>USA</p>
|
||
<p>Stratum: adults/mixed population</p>
|
||
</td><td headers="hd_h_niceng206er2.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">To determine what aspects of the disability experience of persons with CFS are explained by the social model of disability, and what aspects of disability fall outside or contradict central tenets of the social model.</td><td headers="hd_h_niceng206er2.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Data for this study emerged from a federally funded research project that developed and evaluated a participants-driven program for individuals with ‘CFS’, implemented at a centre of independent living.</td></tr></tbody></table></div></div></div><div class="whole_rhythm bk_prnt_obj"><div id="niceng206er2.tab3" class="table"><h3><span class="label">Table 3</span><span class="title">Review findings for health care professionals caring for adults with ME/CFS</span></h3><p class="large-table-link" style="display:none"><span class="right"><a href="/books/NBK589852/table/niceng206er2.tab3/?report=objectonly" target="object">View in own window</a></span></p><div class="large_tbl" id="__niceng206er2.tab3_lrgtbl__"><table><thead><tr><th id="hd_h_niceng206er2.tab3_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Main findings</th><th id="hd_h_niceng206er2.tab3_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Statement of finding</th></tr></thead><tbody><tr><td headers="hd_h_niceng206er2.tab3_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Health care professionals’ awareness and knowledge of ME/CFS<a class="bk_pop" href="#niceng206er2.ref19"><sup>19</sup></a><sup>,</sup>
|
||
<a class="bk_pop" href="#niceng206er2.ref24"><sup>24</sup></a><sup>,</sup>
|
||
<a class="bk_pop" href="#niceng206er2.ref30"><sup>30</sup></a><sup>,</sup>
|
||
<a class="bk_pop" href="#niceng206er2.ref31"><sup>31</sup></a><sup>,</sup>
|
||
<a class="bk_pop" href="#niceng206er2.ref40"><sup>40</sup></a><sup>–</sup><a class="bk_pop" href="#niceng206er2.ref42"><sup>42</sup></a><sup>,</sup>
|
||
<a class="bk_pop" href="#niceng206er2.ref45"><sup>45</sup></a><sup>,</sup>
|
||
<a class="bk_pop" href="#niceng206er2.ref57"><sup>57</sup></a><sup>,</sup>
|
||
<a class="bk_pop" href="#niceng206er2.ref106"><sup>106</sup></a><sup>,</sup>
|
||
<a class="bk_pop" href="#niceng206er2.ref115"><sup>115</sup></a><sup>,</sup>
|
||
<a class="bk_pop" href="#niceng206er2.ref124"><sup>124</sup></a><sup>,</sup>
|
||
<a class="bk_pop" href="#niceng206er2.ref130"><sup>130</sup></a></td><td headers="hd_h_niceng206er2.tab3_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">There is need for increased training for healthcare professionals (HCPs) to increase knowledge of ME/CFS and its management. HCPs often lack the knowledge or awareness to be able to diagnose and manage patients with ME/CFS. This often delays diagnosis and referral and means that patients can be mismanaged. This was expressed by both HCPs and people with ME/CFS. There is a need for improved education of HCPs about ME/CFS and an increased presence of the disease in the medical curriculum.</td></tr><tr><td headers="hd_h_niceng206er2.tab3_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Consensus on diagnostic criteria<a class="bk_pop" href="#niceng206er2.ref19"><sup>19</sup></a><sup>,</sup>
|
||
<a class="bk_pop" href="#niceng206er2.ref40"><sup>40</sup></a><sup>,</sup>
|
||
<a class="bk_pop" href="#niceng206er2.ref41"><sup>41</sup></a><sup>,</sup>
|
||
<a class="bk_pop" href="#niceng206er2.ref57"><sup>57</sup></a></td><td headers="hd_h_niceng206er2.tab3_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">The lack of a confirmed consensus on the diagnostic criteria for ME/CFS meant that there was confusion among HCPs when consulted with symptoms. HCPs expressed the need for agreed case definitions for both diagnosis and recovery.</td></tr><tr><td headers="hd_h_niceng206er2.tab3_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Symptom measures<a class="bk_pop" href="#niceng206er2.ref31"><sup>31</sup></a><sup>,</sup>
|
||
<a class="bk_pop" href="#niceng206er2.ref41"><sup>41</sup></a></td><td headers="hd_h_niceng206er2.tab3_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">The lack of agreed tests and measurements for ME/CFS symptoms mean that HCPs are reluctant to make a diagnosis based on limited clinical signs and struggle to assess recovery.</td></tr><tr><td headers="hd_h_niceng206er2.tab3_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Clinical pathway<a class="bk_pop" href="#niceng206er2.ref30"><sup>30</sup></a><sup>,</sup>
|
||
<a class="bk_pop" href="#niceng206er2.ref66"><sup>66</sup></a><sup>,</sup>
|
||
<a class="bk_pop" href="#niceng206er2.ref106"><sup>106</sup></a></td><td headers="hd_h_niceng206er2.tab3_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">There is need for a clearer clinical management pathway for ME/CFS. HCPs are often sure of where to refer patients once a diagnosis has been reached. ME/CFS specialists express concern at the lack of referrals to their services made by GPs.</td></tr><tr><td headers="hd_h_niceng206er2.tab3_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Training<a class="bk_pop" href="#niceng206er2.ref57"><sup>57</sup></a><sup>,</sup>
|
||
<a class="bk_pop" href="#niceng206er2.ref66"><sup>66</sup></a><sup>,</sup>
|
||
<a class="bk_pop" href="#niceng206er2.ref124"><sup>124</sup></a></td><td headers="hd_h_niceng206er2.tab3_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">HCPs highlighted the need for training in how to diagnose and manage ME/CFS, with a preference for an internet-based course. GPs suggested that ME/CFS specialist services should support GPs by providing them with information and training. There is currently little or no formal training on ME/CFS in the medical curriculum, with students claiming their knowledge often comes from media.</td></tr><tr><td headers="hd_h_niceng206er2.tab3_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Information resources<a class="bk_pop" href="#niceng206er2.ref57"><sup>57</sup></a><sup>,</sup>
|
||
<a class="bk_pop" href="#niceng206er2.ref66"><sup>66</sup></a></td><td headers="hd_h_niceng206er2.tab3_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Some HCPs expressed the need for a resource that can be used during consultation to educate and reassure patients when diagnosed with ME/CFS, for example an online video resource. HCPs from specialist services report using information resources produced by patient groups such as Action for ME or the ME Association when giving advice to people diagnosed with ME/CFS.</td></tr><tr><td headers="hd_h_niceng206er2.tab3_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Support from specialist services<a class="bk_pop" href="#niceng206er2.ref66"><sup>66</sup></a><sup>,</sup>
|
||
<a class="bk_pop" href="#niceng206er2.ref115"><sup>115</sup></a></td><td headers="hd_h_niceng206er2.tab3_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">There is seen to be a lack of communication between GPs and referral centres, with a need for increased feedback and sharing of information from specialist services. Specialist services need to be more visible and provide education and information for GPs.</td></tr><tr><td headers="hd_h_niceng206er2.tab3_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Information about support groups<a class="bk_pop" href="#niceng206er2.ref19"><sup>19</sup></a><sup>,</sup>
|
||
<a class="bk_pop" href="#niceng206er2.ref57"><sup>57</sup></a><sup>,</sup>
|
||
<a class="bk_pop" href="#niceng206er2.ref66"><sup>66</sup></a></td><td headers="hd_h_niceng206er2.tab3_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">HCPs are often unable to recommend support groups because they had little knowledge or information about them.</td></tr><tr><td headers="hd_h_niceng206er2.tab3_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Exposure to people with ME/CFS<a class="bk_pop" href="#niceng206er2.ref31"><sup>31</sup></a><sup>,</sup>
|
||
<a class="bk_pop" href="#niceng206er2.ref41"><sup>41</sup></a><sup>,</sup>
|
||
<a class="bk_pop" href="#niceng206er2.ref66"><sup>66</sup></a></td><td headers="hd_h_niceng206er2.tab3_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">HCPs find that contact with ME/CFS sufferers outside of the clinical setting improved their understanding of the condition. For example, phone conversations or observation of patients living with ME/CFS in their daily lives allowed HCPs to make better understand symptoms and make decisions about management.</td></tr></tbody></table></div></div></div><div class="whole_rhythm bk_prnt_obj"><div id="niceng206er2.tab4" class="table"><h3><span class="label">Table 4</span><span class="title">Review findings for health care professionals caring for children and young people with ME/CFS</span></h3><p class="large-table-link" style="display:none"><span class="right"><a href="/books/NBK589852/table/niceng206er2.tab4/?report=objectonly" target="object">View in own window</a></span></p><div class="large_tbl" id="__niceng206er2.tab4_lrgtbl__"><table><thead><tr><th id="hd_h_niceng206er2.tab4_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Main findings</th><th id="hd_h_niceng206er2.tab4_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Statement of finding</th></tr></thead><tbody><tr><td headers="hd_h_niceng206er2.tab4_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Health care professionals’ awareness and knowledge of ME/CFS<a class="bk_pop" href="#niceng206er2.ref68"><sup>68</sup></a><sup>,</sup>
|
||
<a class="bk_pop" href="#niceng206er2.ref84"><sup>84</sup></a></td><td headers="hd_h_niceng206er2.tab4_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">HCPs often lack the knowledge or awareness to be able to diagnose and manage children and young people with ME/CFS.</td></tr><tr><td headers="hd_h_niceng206er2.tab4_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Consensus on diagnostic criteria<a class="bk_pop" href="#niceng206er2.ref84"><sup>84</sup></a></td><td headers="hd_h_niceng206er2.tab4_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">HCPs caring for children and young people find difficulty in reaching a diagnosis of ME/CFS, with uncertainty around diagnostic criteria and appropriate labels for young people presenting with symptoms.</td></tr><tr><td headers="hd_h_niceng206er2.tab4_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Clinical pathway<a class="bk_pop" href="#niceng206er2.ref84"><sup>84</sup></a></td><td headers="hd_h_niceng206er2.tab4_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">For HCPs caring for children and young people there is uncertainty regarding appropriate and effective treatment pathways for patients after diagnosis.</td></tr><tr><td headers="hd_h_niceng206er2.tab4_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Training<a class="bk_pop" href="#niceng206er2.ref84"><sup>84</sup></a></td><td headers="hd_h_niceng206er2.tab4_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">HCPs caring for children and young people need standardised specialist training around ME/CFS to ensure that there is consistency across services.</td></tr></tbody></table></div></div></div><div class="whole_rhythm bk_prnt_obj"><div id="niceng206er2.tab5" class="table"><h3><span class="label">Table 5</span><span class="title">PICO characteristics of review question</span></h3><p class="large-table-link" style="display:none"><span class="right"><a href="/books/NBK589852/table/niceng206er2.tab5/?report=objectonly" target="object">View in own window</a></span></p><div class="large_tbl" id="__niceng206er2.tab5_lrgtbl__"><table><tbody><tr><th id="hd_b_niceng206er2.tab5_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Objective</th><td headers="hd_b_niceng206er2.tab5_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">To identify the barriers and facilitators to the providing of information to people with ME/CFS</td></tr><tr><th id="hd_b_niceng206er2.tab5_1_1_2_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Population and setting</th><td headers="hd_b_niceng206er2.tab5_1_1_2_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
||
<ul><li class="half_rhythm"><div>Health and social care professionals caring for people with ME/CFS</div></li><li class="half_rhythm"><div>People with ME/CFS and their families and carers.</div></li></ul></td></tr><tr><th id="hd_b_niceng206er2.tab5_1_1_3_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Context</th><td headers="hd_b_niceng206er2.tab5_1_1_3_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Perceptions from health care professionals and people with or who are suspected of having ME/CFS about the barriers and facilitators to providing information, education and support.</td></tr><tr><th id="hd_b_niceng206er2.tab5_1_1_4_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Review strategy</th><td headers="hd_b_niceng206er2.tab5_1_1_4_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Synthesis of qualitative research, following a thematic analysis approach. Results presented in narrative and in table format with summary statements of main review findings. Quality of the evidence will be assessed by a GRADE CerQual approach for each review finding.</td></tr></tbody></table></div></div></div><div class="whole_rhythm bk_prnt_obj"><div id="niceng206er2.tab6" class="table"><h3><span class="label">Table 6</span><span class="title">Summary of studies included in the evidence review</span></h3><p class="large-table-link" style="display:none"><span class="right"><a href="/books/NBK589852/table/niceng206er2.tab6/?report=objectonly" target="object">View in own window</a></span></p><div class="large_tbl" id="__niceng206er2.tab6_lrgtbl__"><table><thead><tr><th id="hd_h_niceng206er2.tab6_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Study</th><th id="hd_h_niceng206er2.tab6_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Design</th><th id="hd_h_niceng206er2.tab6_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Population</th><th id="hd_h_niceng206er2.tab6_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Research aim</th><th id="hd_h_niceng206er2.tab6_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Comments</th></tr></thead><tbody><tr><td headers="hd_h_niceng206er2.tab6_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Ax 1997<a class="bk_pop" href="#niceng206er2.ref13"><sup>13</sup></a></td><td headers="hd_h_niceng206er2.tab6_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Semi-structured interviews at the participant’s home, analysed by content analysis.</td><td headers="hd_h_niceng206er2.tab6_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
||
<p>Study 1: n=9 people with ME/CFS, mean age (SD, range): 44.2 (5.21, 16-68) years; male/female: 3/6; mean illness durations (range): 7.89 (1-14) years</p>
|
||
<p>Study 2: n=9 people with ME/CFS, mean age (SD, range): 44.5 (7.67,34-55) years; male/female: 1/8; mean illness duration (range): 7.7 (1-19) years</p>
|
||
<p>UK</p>
|
||
</td><td headers="hd_h_niceng206er2.tab6_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">To describe ways in which physicians and people with ME/CFS communicated their cognitions and illness beliefs which form the bases of their treatment expectations and the consequences of such interactions in terms of future treatment choices.</td><td headers="hd_h_niceng206er2.tab6_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">This report was based on two separate studies that were part of a larger project on illness adjustment.</td></tr><tr><td headers="hd_h_niceng206er2.tab6_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Bayliss 2016<a class="bk_pop" href="#niceng206er2.ref15"><sup>15</sup></a></td><td headers="hd_h_niceng206er2.tab6_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Semi-structured interviews and thematic analysis followed by theory-driven analysis.</td><td headers="hd_h_niceng206er2.tab6_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
||
<p>Patients (n=11), mean age (range): 46 (27 to 71) years; GPs (n=8)</p>
|
||
<p>Patients were recruited from participating GP practices where GPs had been given access to an online ‘CFS/ME’ training module. This included patient resource packs for use in consultation with new and existing ‘CFS/ME’ patients.</p>
|
||
<p>UK</p>
|
||
</td><td headers="hd_h_niceng206er2.tab6_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">To explore the extent to which ‘CFS/ME’ training and resources can be implemented in routine primary care, leading to a better understanding of the barriers and facilitators to the adoption and integration of new practices associated with medically unexplained conditions.</td><td headers="hd_h_niceng206er2.tab6_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
||
<p>Not all interviewed GPs had fully engaged in the training or research: 6/8 GPs interviewed had participated in the training, although not all had completed the online test and downloaded their completion certificate.</p>
|
||
<p>ME/CFS diagnosis: Searches of GP practice databases were conducted by the research team to identify individuals with an existing diagnosis of ‘CFS/ME’. GPs were asked to review these lists and to exclude patients with other conditions, or other factors that may account for their fatigue.</p>
|
||
</td></tr><tr><td headers="hd_h_niceng206er2.tab6_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Beasant 2014<a class="bk_pop" href="#niceng206er2.ref18"><sup>18</sup></a></td><td headers="hd_h_niceng206er2.tab6_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">In–depth semi structured face to face interviews with thematic analysis.</td><td headers="hd_h_niceng206er2.tab6_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
||
<p>N=12 adolescents; male/female 3/9; age mean (SD) 13.9 (1.6) years; illness duration median (IQR) 13 (9 to 18) months; mildly or moderately affected by ME/CFS, 5 were interviewed post randomisation but before receiving the SMILE study intervention, and 7 after the intervention.</p>
|
||
<p>N=13 mothers; 5 mothers were interviewed at all three time points, 8 took part in one-off interviews: 4 post randomisation and 4 after their child received an intervention.</p>
|
||
<p>UK</p>
|
||
<p>Stratum: children and young people</p>
|
||
</td><td headers="hd_h_niceng206er2.tab6_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">To understand the experiences of adolescents and families in accessing and using a specialist service and to explore whether or not they value referral to a specialist service for young people with ‘CFS/ME’.</td><td headers="hd_h_niceng206er2.tab6_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Specialist Medical Intervention and Lightning Evaluation (SMILE) study designed to test the feasibility and acceptability of recruiting adolescents to a randomised controlled trial (RCT) comparing specialist medical care with specialist medical care and the Lightning process.</td></tr><tr><td headers="hd_h_niceng206er2.tab6_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Beaulieu 2000<a class="bk_pop" href="#niceng206er2.ref19"><sup>19</sup></a></td><td headers="hd_h_niceng206er2.tab6_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Mixture of structured and semi-structured interviews, analysed by thematic analysis.</td><td headers="hd_h_niceng206er2.tab6_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
||
<p>Health professionals including general practitioners, mental health professionals (one of whom was not a physician), infectious disease specialists, immunologists and rheumatologists, recruited following identification by people with ‘CFS’ participating in the study.</p>
|
||
<p>N=15; male/female 10/5; had been in practice from six to seventeen years and individually had seen from six to almost one hundred cases.</p>
|
||
<p>People who were English-speaking and who had a diagnosis of ‘CFS’ from a medical doctor, recruited from physicians practices, support groups and identified by leaders of associations.</p>
|
||
<p>N=43; male/female 16/27; 26% were in school or working full or part time; mean age at onset was 34.2 years (range 15 to 58 years); people had been ill for an average of seven years.</p>
|
||
<p>Significant others including friends, parents, spouses, adult children and a sibling, recruited following identification by people with ‘CFS’ participating in the study.</p>
|
||
<p>N=23; male/female not reported; 69% were working.</p>
|
||
<p>Stratum: adults/mixed population</p>
|
||
<p>Canada</p>
|
||
</td><td headers="hd_h_niceng206er2.tab6_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">To examine multiple perspectives on stigmatization and legitimation of ‘CFS’.</td><td headers="hd_h_niceng206er2.tab6_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"></td></tr><tr><td headers="hd_h_niceng206er2.tab6_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Brigden 2018<a class="bk_pop" href="#niceng206er2.ref22"><sup>22</sup></a></td><td headers="hd_h_niceng206er2.tab6_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">In-depth semistructured interviews (face-to-face or via Skype) and thematic analysis.</td><td headers="hd_h_niceng206er2.tab6_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
||
<p>Adolescents recruited from a specialist paediatric ‘CFS/ME’ service. n=9; male/female: 3/6; mean age (SD): 14.89 (1.9) years, at different stages of the condition; mean number of months from initial assessment to interview (SD): 12.98 (7.98), range 4 to 25) months.</p>
|
||
<p>UK</p>
|
||
</td><td headers="hd_h_niceng206er2.tab6_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">To gather the views of adolescents with CFS/ME to explore what they access online for information and support, and how this influences the way they cope with the condition.</td><td headers="hd_h_niceng206er2.tab6_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
||
<p>Inclusion criteria: a diagnosis of ‘CFS/ME’ (NICE CG53 criteria), age 12-17 years and self-identified as having used the internet for ‘CFS/ME’.</p>
|
||
<p>Exclusion criteria: insufficient proficiency in English to participate in an interview or severely affected.</p>
|
||
</td></tr><tr><td headers="hd_h_niceng206er2.tab6_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Broughton 2017<a class="bk_pop" href="#niceng206er2.ref24"><sup>24</sup></a></td><td headers="hd_h_niceng206er2.tab6_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
||
<p>Semi-structured interviews (six face-to-face, 10 via telephone) and thematic analysis.</p>
|
||
<p>Cross-sectional design using opportunity sampling.</p>
|
||
</td><td headers="hd_h_niceng206er2.tab6_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"><p>Adults who were completing treatment for ME/CFS at one of three outpatient NHS specialist ‘CFS/ME’ services.</p><p>N=16; 87.5% female, 12.5% male. Median age of participants: 43 (range 24-62). Median self-reported duration of illness: 7.5 years (range 1-17). The sample was representative of patients treated by the 3 services during 2014 (median age 40, 81% female), except for longer duration of illness.</p><p>UK</p><p>Stratum: adults/mixed population</p>
|
||
</td><td headers="hd_h_niceng206er2.tab6_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">To explore the experiences of ‘CFS/ME’ patients who were completing programmes of treatment at three NHS specialist ‘CFS/ME’ services in England.</td><td headers="hd_h_niceng206er2.tab6_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">NHS specialist ‘CFS/ME’ services followed NICE guidelines for diagnosis and management of ‘CFS/ME’, offering patient centred programmes aiming to increase patients’ physical, emotional and cognitive capabilities whilst managing the impact of symptoms. CBT and GET are the two main evidence-based therapies which (or components of which) are used in conjunction with techniques aimed at managing activity, sleep hygiene and relaxation. Patients also receive practical support around employment and the benefits system. Services shared a philosophy of rehabilitation aimed at ‘recovery’ or ‘significant improvement’, whilst acknowledging that this would not be attained by all patients.</td></tr><tr><td headers="hd_h_niceng206er2.tab6_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Chew-Graham 2008<a class="bk_pop" href="#niceng206er2.ref31"><sup>31</sup></a></td><td headers="hd_h_niceng206er2.tab6_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Semi-structured interviews and thematic analysis.</td><td headers="hd_h_niceng206er2.tab6_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
||
<p>Family physicians (n=14; mean age: 48, SD: 12 years) and patients (n=24; mean age: 48, SD: 12 years) participating in a RCT of 2 nurse-led interventions in primary care (FINE trial)</p>
|
||
<p>UK</p>
|
||
<p>Stratum: adults/mixed population</p>
|
||
</td><td headers="hd_h_niceng206er2.tab6_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">To explore how patients with ‘CFS/ME’ and family physicians conceptualise and understand this condition and how their understanding might affect the primary care consultation.</td><td headers="hd_h_niceng206er2.tab6_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
||
<p>FINE trial was a primary-care-based RCT examining self-help treatment and pragmatic rehabilitation for patients with ME/CFS.</p>
|
||
<p>To be included in the trial, registered patients with ‘CFS/ME’ referred by physicians in 44 primary care trusts in North West England, had to fulfil the Oxford inclusion criteria for ‘CFS/ME’, score 70% or less on the SF-36 physical functioning scale and 4 or more on the 11-item Chalder fatigue scale.</p>
|
||
</td></tr><tr><td headers="hd_h_niceng206er2.tab6_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">De Carvalho Leite 2011<a class="bk_pop" href="#niceng206er2.ref37"><sup>37</sup></a></td><td headers="hd_h_niceng206er2.tab6_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Focus groups (n=6) and semi-structured interviews (n=35) and (data-led) thematic analysis.</td><td headers="hd_h_niceng206er2.tab6_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
||
<p>Adults with ‘CFS/ME’ (n=35), purposively selected to include a diverse range of illness severity, duration, social variation (age, gender, ethnic background and socio-economic conditions) and year of diagnosis.</p>
|
||
<p>UK</p>
|
||
</td><td headers="hd_h_niceng206er2.tab6_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">To investigate the impact of ‘CFS/ME’ on people from varied social background, including those from ethnic minorities, and what challenges may be posed to health care practitioners in providing appropriate and equitable care for this condition.</td><td headers="hd_h_niceng206er2.tab6_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
||
<p>Six of the 35 participants were purposively selected to include a diverse range of illness severity, for both an initial focus group discussion and a later one-to-one interview.</p>
|
||
<p>The study was part of the National Observatory of people with ‘CFS/ME’ in England, which aims to produce and to facilitate epidemiological and social research, in response to the needs of these people so as to fill a major gap in the evidence of the occurrence and the impact of this disease.</p>
|
||
</td></tr><tr><td headers="hd_h_niceng206er2.tab6_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Devendorf 2019<a class="bk_pop" href="#niceng206er2.ref40"><sup>40</sup></a></td><td headers="hd_h_niceng206er2.tab6_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Semi-structured phone-based interviews with physicians and analysing the data using deductive thematic analysis.</td><td headers="hd_h_niceng206er2.tab6_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
||
<p>Physicians specialising in ME/CFS of diverse medical specialties (n=10) and other physicians (n=3), not identified as ME/CFS specialists. n=13, males: 9, females: 4; mean age 60 years. For years in practice, three physicians had 30 or more years, seven had 20-29 years, one had 10-19 years and two had 1-9 years of medical experience.</p>
|
||
<p>USA</p>
|
||
</td><td headers="hd_h_niceng206er2.tab6_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">To explore physicians views on the challenges to studying and approaching recovery, to examine these challenges in-depth and provide recommendations that will improve how researchers and practitioners approach the study and quantification of ME and CFS recovery.</td><td headers="hd_h_niceng206er2.tab6_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
||
<p>Participants were recruited via non-probabilistic, purposive sampling. Specialists were defined by their extensive patient experience, research contributions and significant involvement in the field.</p>
|
||
<p>The sample was diverse in their medical specialties: epidemiology (n=1), geriatrics (n=1), infectious diseases (n=1), neurology (n=1), internal medicine (n=2), psychiatry (n=2), general medicine (n=3), and paediatrics (n=5); three physicians identified with two medical specialties.</p>
|
||
</td></tr><tr><td headers="hd_h_niceng206er2.tab6_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Hannon 2012<a class="bk_pop" href="#niceng206er2.ref57"><sup>57</sup></a></td><td headers="hd_h_niceng206er2.tab6_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Semi-structured interviews and grounded theory approach.</td><td headers="hd_h_niceng206er2.tab6_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
||
<p>Health practitioners (GPs n=9, practice nurses n=5, ‘CFS/ME’ specialists n=4), Carers (n=10), patients (n=16), aged 28-71</p>
|
||
<p>UK</p>
|
||
<p>Stratum: adults/mixed population</p>
|
||
</td><td headers="hd_h_niceng206er2.tab6_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">To develop an education and training intervention to support practitioners in making an early diagnosis of ‘CFS/ME’ and supporting patients in the management of their symptoms.</td><td headers="hd_h_niceng206er2.tab6_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"></td></tr><tr><td headers="hd_h_niceng206er2.tab6_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Horton 2010<a class="bk_pop" href="#niceng206er2.ref66"><sup>66</sup></a></td><td headers="hd_h_niceng206er2.tab6_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Semi-structured interviews and thematic analysis.</td><td headers="hd_h_niceng206er2.tab6_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
||
<p>Specialist (n=3) and non-specialist (n=3) health care professionals who had been nominated by people with ME/CFS who had taken part in an associated England-wide study of their support needs.</p>
|
||
<p>N=6; gender not reported. Three participants were from specialist services (medicine, occupational therapy, physiotherapy) and three were from non-specialist services (medicine, occupational health, holistic practice). 36 people with ME/CFS nominated eight HCPs as having provided them with particularly helpful or effective care and six agreed to participate. One HCP was named by six different people with ME/CFS.</p>
|
||
<p>UK</p>
|
||
</td><td headers="hd_h_niceng206er2.tab6_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">To explore the nature of professional ‘best practice’ in working with people with ME/CFS.</td><td headers="hd_h_niceng206er2.tab6_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"></td></tr><tr><td headers="hd_h_niceng206er2.tab6_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Ryckeghem 2017<a class="bk_pop" href="#niceng206er2.ref115"><sup>115</sup></a></td><td headers="hd_h_niceng206er2.tab6_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Semi-structured interviews using open explorative thematic coding (thematic analysis).</td><td headers="hd_h_niceng206er2.tab6_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
||
<p>A purposive sample of patients was selected through the department of General Internal Medicine at the University Hospital Ghent to achieve maximum variation.</p>
|
||
<p>A convenience sample of GPs was recruited from different provinces in Belgium.</p>
|
||
<p>Patients (n=15); median age (range): 45 (33-59 years),n=14 female ; GPs (n=15); median age (range): 49 (31-62 years), n=7 female.</p>
|
||
<p>Belgium</p>
|
||
</td><td headers="hd_h_niceng206er2.tab6_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">To explore the experiences and expectations of patients with chronic fatigue syndrome and general practitioners to develop the potential role of an advanced nurse practitioner at the diagnostic care path of abnormal fatigue developed for regional transmural implementation in the Belgian provinces of East and West Flanders.</td><td headers="hd_h_niceng206er2.tab6_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"></td></tr><tr><td headers="hd_h_niceng206er2.tab6_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Stenhoff 2015<a class="bk_pop" href="#niceng206er2.ref124"><sup>124</sup></a></td><td headers="hd_h_niceng206er2.tab6_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Face-to-face semi-structured interviews and inductive thematic analysis.</td><td headers="hd_h_niceng206er2.tab6_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
||
<p>Undergraduate medical students in years 3, 4 and 5 at the University of Manchester, UK.</p>
|
||
<p>N=21; 7 female, 14 male. Mean age: 22 years old. Four were third-year students, 11 were fourth-year students and six were fifth (final)-year students. Participants were recruited through the university’s student-net, poster adverts around campus and via personal contact. Sampling ended at saturation in a staged approach, with two students turned away at the end of the study.</p>
|
||
<p>UK</p>
|
||
<p>Stratum: adults/mixed population</p>
|
||
</td><td headers="hd_h_niceng206er2.tab6_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">To investigate medical students’ beliefs, attitudes and knowledge of ME/CFS.</td><td headers="hd_h_niceng206er2.tab6_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">.</td></tr><tr><td headers="hd_h_niceng206er2.tab6_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Taylor 2005<a class="bk_pop" href="#niceng206er2.ref130"><sup>130</sup></a></td><td headers="hd_h_niceng206er2.tab6_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Focus group interviews, open-ended questionnaires, progress notes, and a program evaluation questionnaire, with thematic analysis using grounded theory approach</td><td headers="hd_h_niceng206er2.tab6_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
||
<p>Adults with ME/CFS meeting the Fukuda criteria for CFS, who were participating in a research project aimed to evaluate a participant-designed rehabilitation program.</p>
|
||
<p>N=47; 45 female, 2 male. Mean age: 46.9 years (SD 10.4). Seven participants were in full-time work, seven in part-time work and 33 were not working. Eight participants were minority ethnicity, 39 were non-minority.</p>
|
||
<p>USA</p>
|
||
<p>Stratum: adults/mixed population</p>
|
||
</td><td headers="hd_h_niceng206er2.tab6_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">To determine what aspects of the disability experience of persons with CFS are explained by the social model of disability, and what aspects of disability fall outside or contradict central tenets of the social model.</td><td headers="hd_h_niceng206er2.tab6_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Data for this study emerged from a federally funded research project that developed and evaluated a participants-driven program for individuals with ‘CFS’, implemented at a centre of independent living.</td></tr><tr><td headers="hd_h_niceng206er2.tab6_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Woodward 1995<a class="bk_pop" href="#niceng206er2.ref147"><sup>147</sup></a></td><td headers="hd_h_niceng206er2.tab6_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Two related investigations: qualitative interviews with GPs and a longitudinal study comprising three qualitative interviews with patients.</td><td headers="hd_h_niceng206er2.tab6_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
||
<p>General practitioners, N=20; male/female: 9/11.</p>
|
||
<p>People diagnosed by doctors as having CFS. N=50; male/female: 10/40; females mean age (range): 36.4 (13 to 64) years; males mean age (range): 39.2 (25 to 53) years.</p>
|
||
<p>Australia</p>
|
||
</td><td headers="hd_h_niceng206er2.tab6_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">To examine doctors’ and patients’ views on the risks and benefits of the symptomatic diagnosis of CFS.</td><td headers="hd_h_niceng206er2.tab6_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"></td></tr></tbody></table></div></div></div><div class="whole_rhythm bk_prnt_obj"><div id="niceng206er2.tab7" class="table"><h3><span class="label">Table 7</span><span class="title">Review findings, adults with ME/CFS, severity mixed or unclear</span></h3><p class="large-table-link" style="display:none"><span class="right"><a href="/books/NBK589852/table/niceng206er2.tab7/?report=objectonly" target="object">View in own window</a></span></p><div class="large_tbl" id="__niceng206er2.tab7_lrgtbl__"><table><thead><tr><th id="hd_h_niceng206er2.tab7_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Main findings</th><th id="hd_h_niceng206er2.tab7_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Statement of finding</th></tr></thead><tbody><tr><td headers="hd_h_niceng206er2.tab7_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Facilitator: Communication/relationship between HCP and patient<a class="bk_pop" href="#niceng206er2.ref40"><sup>40</sup></a><sup>,</sup><a class="bk_pop" href="#niceng206er2.ref66"><sup>66</sup></a><sup>,</sup><a class="bk_pop" href="#niceng206er2.ref115"><sup>115</sup></a><sup>,</sup><a class="bk_pop" href="#niceng206er2.ref31"><sup>31</sup></a><sup>,</sup><a class="bk_pop" href="#niceng206er2.ref19"><sup>19</sup></a><sup>,</sup><a class="bk_pop" href="#niceng206er2.ref147"><sup>147</sup></a></td><td headers="hd_h_niceng206er2.tab7_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Building a relationship between HCP and patient allows better provision of information and support, and frequent contact improves understanding of ME/CFS for both HCP and patient.</td></tr><tr><td headers="hd_h_niceng206er2.tab7_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Facilitator: Referral to specialist services<a class="bk_pop" href="#niceng206er2.ref24"><sup>24</sup></a><sup>,</sup><a class="bk_pop" href="#niceng206er2.ref37"><sup>37</sup></a><sup>,</sup><a class="bk_pop" href="#niceng206er2.ref15"><sup>15</sup></a></td><td headers="hd_h_niceng206er2.tab7_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Specialist services were seen as the best provider of information and support for people with ME/CFS, with referral to specialists providing a positive experience after a long road to diagnosis.</td></tr><tr><td headers="hd_h_niceng206er2.tab7_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Facilitator: Online training resource<a class="bk_pop" href="#niceng206er2.ref15"><sup>15</sup></a></td><td headers="hd_h_niceng206er2.tab7_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">HCPs valued online training resources that showed how to work with people with ME/CFS in a consultation setting, with several GPs finding video resources particularly useful for this.</td></tr><tr><td headers="hd_h_niceng206er2.tab7_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Barrier: Limited specialist referral options<a class="bk_pop" href="#niceng206er2.ref15"><sup>15</sup></a></td><td headers="hd_h_niceng206er2.tab7_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">While referral to specialists and other support services was seen a route to provide information and support, GPs often do not know when or where they should refer people with ME/CFS.</td></tr><tr><td headers="hd_h_niceng206er2.tab7_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Barrier: Limited knowledge of support groups<a class="bk_pop" href="#niceng206er2.ref57"><sup>57</sup></a><sup>,</sup><a class="bk_pop" href="#niceng206er2.ref130"><sup>130</sup></a><sup>,</sup><a class="bk_pop" href="#niceng206er2.ref19"><sup>19</sup></a></td><td headers="hd_h_niceng206er2.tab7_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">HCPs often do not have sufficient information to be able to refer people with ME/CFS to support groups and can be hesitant to do so because of mixed beliefs about their effect on the patient.</td></tr><tr><td headers="hd_h_niceng206er2.tab7_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Barrier: Lack of training<a class="bk_pop" href="#niceng206er2.ref124"><sup>124</sup></a><sup>,</sup><a class="bk_pop" href="#niceng206er2.ref57"><sup>57</sup></a></td><td headers="hd_h_niceng206er2.tab7_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">There is a lack of training and education available for HCPs, GPs in particular, on how to manage people with ME/CFS, beginning with an absence of ME/CFS on the university medical curriculum.</td></tr><tr><td headers="hd_h_niceng206er2.tab7_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Barrier: Reluctance of GPs to training<a class="bk_pop" href="#niceng206er2.ref15"><sup>15</sup></a></td><td headers="hd_h_niceng206er2.tab7_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Some GPs are reluctant to take on the management of people with ME/CFS, preferring to refer to secondary care specialists, and do not always engage with ME/CFS training when offered.</td></tr><tr><td headers="hd_h_niceng206er2.tab7_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Barrier: Consultation time constraints<a class="bk_pop" href="#niceng206er2.ref15"><sup>15</sup></a></td><td headers="hd_h_niceng206er2.tab7_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Due to the complexity of ME/CFS and its symptoms, HCPs often find that the nature of clinic time and short consultation lengths do not allow for effective communication and support.</td></tr><tr><td headers="hd_h_niceng206er2.tab7_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Barrier: cognitive and physical functioning of ME/CFS patients and the impact to engage with services<a class="bk_pop" href="#niceng206er2.ref66"><sup>66</sup></a></td><td headers="hd_h_niceng206er2.tab7_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">People with ME/CFS, particularly those with severe ME/CFS, have limited energy and combined with the impact of cognitive difficulties find it difficult to engage and receive information, and support from HCPs.</td></tr><tr><td headers="hd_h_niceng206er2.tab7_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Barrier: Information overload<a class="bk_pop" href="#niceng206er2.ref115"><sup>115</sup></a></td><td headers="hd_h_niceng206er2.tab7_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">People with ME/CFS can sometimes experience an overload of information during the care process which can negatively affect their understanding of the condition.</td></tr><tr><td headers="hd_h_niceng206er2.tab7_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Barrier: Fear of negative reactions<a class="bk_pop" href="#niceng206er2.ref19"><sup>19</sup></a><sup>,</sup><a class="bk_pop" href="#niceng206er2.ref13"><sup>13</sup></a></td><td headers="hd_h_niceng206er2.tab7_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">HCPs can be hesitant to provide information and discuss psychological factors around ME/CFS with patients due to concerns about patients’ possible negative reactions.</td></tr><tr><td headers="hd_h_niceng206er2.tab7_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Barrier: Uncertainty and lack of confidence in information<a class="bk_pop" href="#niceng206er2.ref19"><sup>19</sup></a></td><td headers="hd_h_niceng206er2.tab7_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Uncertainties associated with ME/CFS mean that HCPs are often unsure about the reliability of information they have, making them cautious and hesitant when explaining the condition.</td></tr></tbody></table></div></div></div><div class="whole_rhythm bk_prnt_obj"><div id="niceng206er2.tab8" class="table"><h3><span class="label">Table 8</span><span class="title">Review findings, children and young people with ME/CFS, severity mixed or unclear</span></h3><p class="large-table-link" style="display:none"><span class="right"><a href="/books/NBK589852/table/niceng206er2.tab8/?report=objectonly" target="object">View in own window</a></span></p><div class="large_tbl" id="__niceng206er2.tab8_lrgtbl__"><table><thead><tr><th id="hd_h_niceng206er2.tab8_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Main findings</th><th id="hd_h_niceng206er2.tab8_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Statement of finding</th></tr></thead><tbody><tr><td headers="hd_h_niceng206er2.tab8_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Facilitator: Referral to specialist services<a class="bk_pop" href="#niceng206er2.ref18"><sup>18</sup></a></td><td headers="hd_h_niceng206er2.tab8_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Referral to specialist services provided children and young people with ME/CFS and their parents with information and support, as well as a letter allowing educational adjustments.</td></tr><tr><td headers="hd_h_niceng206er2.tab8_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Facilitator: Digital social support<a class="bk_pop" href="#niceng206er2.ref22"><sup>22</sup></a></td><td headers="hd_h_niceng206er2.tab8_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Digital social support websites such as health forums and other social media sites provide quick, simple and undemanding access to social support, reducing isolation.</td></tr><tr><td headers="hd_h_niceng206er2.tab8_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Barrier: Unhelpful or unrelatable NHS information resources<a class="bk_pop" href="#niceng206er2.ref22"><sup>22</sup></a></td><td headers="hd_h_niceng206er2.tab8_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">NHS resources lack the accessibility and relatability provided by patient- and peer-led websites in terms of language and narrative approach used.</td></tr></tbody></table></div></div></div></div><div><p>Final</p></div><div><p>Evidence reviews underpinning recommendations and research recommendations in the NICE guideline</p><p>These evidence reviews were developed by the National Guideline Centre</p></div><div><p><b>Disclaimer</b>: The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or service users. The recommendations in this guideline are not mandatory and the guideline does not override the responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or their carer or guardian.</p><p>Local commissioners and/or providers have a responsibility to enable the guideline to be applied when individual health professionals and their patients or service users wish to use it. They should do so in the context of local and national priorities for funding and developing services, and in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities. Nothing in this guideline should be interpreted in a way that would be inconsistent with compliance with those duties.</p><p>NICE guidelines cover health and care in England. Decisions on how they apply in other UK countries are made by ministers in the <a href="http://wales.gov.uk/" ref="pagearea=body&targetsite=external&targetcat=link&targettype=uri">Welsh Government</a>, <a href="http://www.scotland.gov.uk/" ref="pagearea=body&targetsite=external&targetcat=link&targettype=uri">Scottish Government</a>, and <a href="http://www.northernireland.gov.uk/" ref="pagearea=body&targetsite=external&targetcat=link&targettype=uri">Northern Ireland Executive</a>. All NICE guidance is subject to regular review and may be updated or withdrawn.</p></div></div></div>
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