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preserveAspectRatio="none"><path fill="none" stroke="#000" stroke-width="36" stroke-linecap="round" style="fill:#FFF" d="m320,350a153,153 0 1,0-2,2l170,170m-91-117 110,110-26,26-110-110"></path></svg></a><a id="jr-fip-done" class="wsprkl btn" title="Dismiss find">✘</a></nav><nav id="jr-fip-info-p"><a id="jr-fip-prev" class="wsprkl btn" title="Jump to previuos match">◀</a><button id="jr-fip-matches">no matches yet</button><a id="jr-fip-next" class="wsprkl btn" title="Jump to next match">▶</a></nav></nav></div><div id="jr-epub-interstitial" class="hidden"></div><div id="jr-content"><article data-type="main"><div class="main-content lit-style"><div class="fm-sec bkr_bottom_sep"><div class="bkr_thumb"><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-niceng206er1-lrg.png" alt="Cover of Information, education and support for people with ME/CFS and their families and carers" /></a></div><div class="bkr_bib"><h1 id="_NBK579527_"><span itemprop="name">Information, education and support for people with ME/CFS and their families and carers</span></h1><div class="subtitle">Myalgic encephalomyelitis (or encephalopathy) / chronic fatigue syndrome: diagnosis and management</div><p><b>Evidence review A</b></p><p><i>NICE Guideline, No. 206</i></p><p class="contrib-group"><h4>Authors</h4><span itemprop="author">National Guideline Centre (UK)</span>.</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 class="bkr_clear"></div></div><div id="niceng206er1.s1"><h2 id="_niceng206er1_s1_">1. Information, education and support for people with ME/CFS and their families and carers</h2><div id="niceng206er1.s1.1"><h3>1.1. Review question</h3><p>What information, education and support do people with ME/CFS and their families and carers need?</p><div id="niceng206er1.s1.1.1"><h4>1.1.1. Introduction</h4><p>Current guidance acknowledges that a supportive and collaborative relationship between health care practitioners and the person with a confirmed diagnosis of ME/CFS, together with accurate information, facilitates effective management of the condition. The care and support needs of people with ME/CFS varies from very little to continual care depending on severity of illness, stage of diagnosis, and ability to self-manage.</p><p>There is currently no specific guidance on what should be included in or the content of any information, the efficacy of different support approaches, or the educational needs of people with ME/CFS, their families and carers. This review aims to explore and identify the information, education and support needs of people with ME/CFS and their families and carers.</p></div><div id="niceng206er1.s1.1.2"><h4>1.1.2. Summary of the protocol</h4><p>For full details see the review protocol in <a href="#niceng206er1.appa">Appendix A</a>.</p><div class="iconblock whole_rhythm clearfix ten_col table-wrap" id="figniceng206er1tab1"><a href="/books/NBK579527/table/niceng206er1.tab1/?report=objectonly" target="object" title="Table 1" class="img_link icnblk_img figpopup" rid-figpopup="figniceng206er1tab1" rid-ob="figobniceng206er1tab1"><img class="small-thumb" src="/books/NBK579527/table/niceng206er1.tab1/?report=thumb" src-large="/books/NBK579527/table/niceng206er1.tab1/?report=previmg" alt="Table 1. Characteristics of review question." /></a><div class="icnblk_cntnt"><h4 id="niceng206er1.tab1"><a href="/books/NBK579527/table/niceng206er1.tab1/?report=objectonly" target="object" rid-ob="figobniceng206er1tab1">Table 1</a></h4><p class="float-caption no_bottom_margin">Characteristics of review question. </p></div></div></div><div id="niceng206er1.s1.1.3"><h4>1.1.3. 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="#niceng206er1.appa">appendix A</a> and the <a href="/books/NBK579527/bin/niceng206er1_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="niceng206er1.s1.1.4"><h4>1.1.4. Qualitative evidence</h4><div id="niceng206er1.s1.1.4.1"><h5>1.1.4.1. Included studies</h5><p>Fifteen qualitative studies were included in the review;<a class="bibr" href="#niceng206er1.ref15" rid="niceng206er1.ref15"><sup>15</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref18" rid="niceng206er1.ref18"><sup>18</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref22" rid="niceng206er1.ref22"><sup>22</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref25" rid="niceng206er1.ref25"><sup>25</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref32" rid="niceng206er1.ref32"><sup>32</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref38" rid="niceng206er1.ref38"><sup>38</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref43" rid="niceng206er1.ref43"><sup>43</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref58" rid="niceng206er1.ref58"><sup>58</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref61" rid="niceng206er1.ref61"><sup>61</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref69" rid="niceng206er1.ref69"><sup>69</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref87" rid="niceng206er1.ref87"><sup>87</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref89" rid="niceng206er1.ref89"><sup>89</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref116" rid="niceng206er1.ref116"><sup>116</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref130" rid="niceng206er1.ref130"><sup>130</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref131" rid="niceng206er1.ref131"><sup>131</sup></a> these are summarised in <a class="figpopup" href="/books/NBK579527/table/niceng206er1.tab2/?report=objectonly" target="object" rid-figpopup="figniceng206er1tab2" rid-ob="figobniceng206er1tab2">Table 2</a> below. Key findings from these studies are summarised in <a href="#niceng206er1.s1.1.6.1">Section 1.1.6.1</a> below. See also the study selection flow chart in <a href="#niceng206er1.appc">Appendix C</a>, study evidence tables in <a href="#niceng206er1.appd">Appendix D</a>, and excluded studies lists in <a href="#niceng206er1.appf">Appendix F</a>.</p><div id="niceng206er1.s1.1.4.1.1"><h5>Adults</h5><p>Nine studies were identified on the information, education and support needs of adults with ME/CFS and their families and carers. Of these, eight included adults with ME/CFS and one study both adults with ME/CFS and their carers.</p></div><div id="niceng206er1.s1.1.4.1.2"><h5>Children and young people</h5><p>Six studies were identified on the information, education and support needs of children and young people with ME/CFS and their families and carers. Of these, four studies included children and young people with ME/CFS, one study children and young people with ME/CFS and their families and carers, and one study the mothers of children and young people with ME/CFS. Two of the studies excluded severely affected individuals. One study was conducted exclusively with parent carers caring for children from 5 years old to adults (the majority caring for adult daughters). The information reported in this study was considered to contribute to emerging themes relevant to both strata of adults, and children and young people.</p><p>In line with the review protocol the evidence relevant to adults is reported separately to children and young people. The severity of ME/CFS was mixed or unclear.</p><p>As a large number of papers were identified for this review, inclusion was halted once data saturation was reached. Data saturation is the point at which no new themes or data contributing to themes emerged from the studies found to match the review protocol. These studies are listed in <a href="#niceng206er1.appf.et2">Table 8</a>.</p><p>Where ‘CFS/ME’ 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="niceng206er1.s1.1.4.2"><h5>1.1.4.2. Excluded studies</h5><p>See the excluded studies in <a href="#niceng206er1.appf">Appendix F</a>.</p></div></div><div id="niceng206er1.s1.1.5"><h4>1.1.5. Summary of studies included in the qualitative evidence</h4><div class="iconblock whole_rhythm clearfix ten_col table-wrap" id="figniceng206er1tab2"><a href="/books/NBK579527/table/niceng206er1.tab2/?report=objectonly" target="object" title="Table 2" class="img_link icnblk_img figpopup" rid-figpopup="figniceng206er1tab2" rid-ob="figobniceng206er1tab2"><img class="small-thumb" src="/books/NBK579527/table/niceng206er1.tab2/?report=thumb" src-large="/books/NBK579527/table/niceng206er1.tab2/?report=previmg" alt="Table 2. Summary of studies included in the review." /></a><div class="icnblk_cntnt"><h4 id="niceng206er1.tab2"><a href="/books/NBK579527/table/niceng206er1.tab2/?report=objectonly" target="object" rid-ob="figobniceng206er1tab2">Table 2</a></h4><p class="float-caption no_bottom_margin">Summary of studies included in the review. </p></div></div><p>See <a href="#niceng206er1.appd">Appendix D</a> for full evidence tables.</p></div><div id="niceng206er1.s1.1.6"><h4>1.1.6. Qualitative evidence synthesis</h4><div id="niceng206er1.s1.1.6.1"><h5>1.1.6.1. Summary of the qualitative evidence</h5><div class="iconblock whole_rhythm clearfix ten_col table-wrap" id="figniceng206er1tab3"><a href="/books/NBK579527/table/niceng206er1.tab3/?report=objectonly" target="object" title="Table 3" class="img_link icnblk_img figpopup" rid-figpopup="figniceng206er1tab3" rid-ob="figobniceng206er1tab3"><img class="small-thumb" src="/books/NBK579527/table/niceng206er1.tab3/?report=thumb" src-large="/books/NBK579527/table/niceng206er1.tab3/?report=previmg" alt="Table 3. Review findings for Adults with ME/CFS, their families or carers." /></a><div class="icnblk_cntnt"><h4 id="niceng206er1.tab3"><a href="/books/NBK579527/table/niceng206er1.tab3/?report=objectonly" target="object" rid-ob="figobniceng206er1tab3">Table 3</a></h4><p class="float-caption no_bottom_margin">Review findings for Adults with ME/CFS, their families or carers. </p></div></div><p>See <a href="#niceng206er1.appe">Appendix E</a> for full GRADE-CERQual tables.</p></div><div id="niceng206er1.s1.1.6.2"><h5>1.1.6.2. Narrative summary of review findings</h5><div id="niceng206er1.s1.1.6.2.1"><h5>1.1.6.2.1. Information education and support for adults with ME/CFS, their families or carers</h5><div id="niceng206er1.s1.1.6.2.1.1"><h5>Review finding 1: Information about ME/CFS</h5><p>Patients and carers felt they had a limited understanding of ‘CFS/ME’ and lacked general information about the illness, having received little or conflicting information. They report not having a sufficient overview of what to expect. This often led to false hopes and expectations about the illness, treatment and prognosis and led to distress and worry. Moving away from the idea of cure towards goals related to management of ‘CFS/ME’ was linked to obtaining information and acquiring knowledge about the condition. Patients who expressed confidence in their level of knowledge about ‘CFS/ME’ also tended to express less anxiety about the future and less concern or distress about waiting for an appointment with specialist services. Understanding the complexity of the illness, especially the interaction between different factors, was perceived by many as a route out of this cycle of fatigue. Some patients also expressed hopes that specialist services would be able to advise them on which factors were relevant to the illness.</p><p>Patients frequently reported their families, friends, co-workers and employers also lacked an understanding of ME/CFS which led to a lack of empathy, frustration and often implicated their relationship with patients who often felt obligated to educate them. To bypass limited clinical knowledge and actively engage in consultations, patients reported having to seek additional sources of evidence about ‘CFS/ME’ to bring to physicians.</p><p>Explanation of quality assessment: Moderate concerns over methodological limitations with moderate concerns in two studies (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 and due to the potential influence of the researcher on the findings not being discussed and lack of transparency on the analysis process in the other study), minor concerns over two studies (due to the potential influence of the researcher on the findings not being discussed in one study and concerns over data analysis due to data richness with findings mostly supported by single quotes in both studies), very minor concern in one study (due to the potential influence of the researcher on the findings not being discussed) and no concerns over two studies; no concerns about coherence with consistent information emerging across studies; minor concerns about relevance due participants in one study being self-identified as having ME/CFS rather than having been diagnosed according to accepted criteria but no similar concerns in the other six contributing studies and participants of one study consisting of people recruited in a RCT; no concerns about adequacy, the finding being supported by sufficient information across the contributing studies. Overall assessment of confidence was moderate due the methodological limitations and concerns about relevance identified in the contributing studies.</p></div><div id="niceng206er1.s1.1.6.2.1.2"><h5>Review finding 2: Type of information: online & evidence-based</h5><p>Patients and carers in one study stated that a brief leaflet outlining the symptoms and the evidence for management options would be useful at diagnosis. However, most patients suggested that information resources should be made available online and therefore accessible to all and suggested websites (such as NHS Choices) that they believed would be useful for the resources to be linked to in order to be easily accessible. Patients welcomed evidence-based resources of information as there are currently issues with identifying reliable information on the internet and evidence-based information resources were reported to have an impact on the friends, family and colleagues of the patients, improving relationships and strengthening support networks.</p><p>DVD case studies were seen as particularly important in helping patients and carers to understand that others shared their experiences, and their format allowed those who found it difficult to read to access the information. As a result of this information some patients felt that they needed to visit their practice less frequently.</p><p>Nevertheless, some patients were concerned that by placing the resources online, GPs would be let off managing the condition in primary care and reported that they wished to bring information from the internet to the consultation in order to gain a diagnosis from a health professional or family physician. Self-help groups and web sites were seen to provide important sources of evidence that patients could take to their family physician.</p><p>Alternative sources of evidence that were seen as helpful included representations of ‘CFS/ME’ expressed within the media, as media personalities lent credibility to the condition and their positive attributes relieved patients from being culpable.</p><p>Explanation of quality assessment: Minor concerns over methodological limitations with minor concerns in two studies (due to the potential impact of the researcher on the findings not being discussed in one study and due to concerns over data analysis due to data richness with themes mostly supported by single quotes in both studies) and very minor concerns in the other study (due the potential influence of the researcher not being discussed); moderate concerns about coherence due to differences both between studies and within studies in regards to the types of information patients preferred, with some patients and carers reporting on the usefulness of leaflets, others reporting on the usefulness of information available online, with some worrying online information would negatively impact the management of ME/CFS in primary care and others talking about alternative evidence sources from the media; very minor concerns about relevance (due to participants in one study consisting of people recruited in a RCT) that were too minor to lower the confidence rating; no concerns about adequacy. Overall assessment of confidence was moderate due to the methodological concerns and concerns around coherence.</p></div><div id="niceng206er1.s1.1.6.2.1.3"><h5>Review finding 3: Advice on symptom management & treatment options</h5><p>ME/CFS patients and carers reported experiences characterised by a lack of treatment planning, treatment recommendations and advice on symptom management or even having received inappropriate treatment recommendations. They sought advice on effective self-help strategies, reporting dilemma about whether to push themselves to continue activities or whether to rest or take time off, and advice on diet, the effects of stress on symptoms, how to best cope with continued employment or return to work.</p><p>Due to a lack of knowledge in the medical community and the lack of support they experienced from the health care system, patients and carers described how, having been left to find their own information, they encountered difficulty finding appropriate treatment, with some seeking help from private professionals or paying for alternative therapies. Those desperate for relief of feelings of pain or illness reported finding treatments such as massage, osteopathy, dietary advice and acupuncture helpful, and it caused ongoing frustration that such interventions were not funded by either the NHS or by a private health insurance for ‘CFS/ME’.</p><p>Patients felt that the health-care system should explore useful interventions and suffered from a lack of control over choices of treatment for managing their illness, which they saw as due to both a lack of resources in the National Health and social systems and the relative lack of recognition or value given to their own experience with illness. They criticized the continued focus on cognitive-behavioural and graded exercise therapies which attribute the illness to psychological causes and called for more physiological research to develop effective biomedical treatments and destigmatize the field. Some patients retained for a new treatment as a rational to continue to live while others experienced moments where the unbearable physical pain of the illness led them to view suicide as a logical escape.</p><p>Explanation of quality assessment: Moderate concerns over methodological limitations with serious concerns over one study (related to the use of public data where a lack of detail on the methods of participant recruitment and primary data collection implicating our ability to assess bias), moderate concerns over one study (due to concerns over the appropriateness of the data collection method, the study being a follow-up to a quantitative study with open-ended online responses) and minor and very minor concerns in the majority of studies (minor concerns in two studies due to concerns over data analysis due to data richness with findings mostly supported by single quotes in two studies and the potential influence of the researcher not being discussed in one study, and very minor concerns in two studies due to the influence of the researcher not being discussed) and no concerns over one study; no concerns about coherence; very minor concerns over relevance with concerns over applicability of one study where participants were self-identified as having ME/CFS and had not been diagnosed according to accepted criteria and one study where parent carers of ME/CFS patients were not limited to people caring for adults, being counterbalanced by the fact that the same information emerged from studies with no such concerns, one of which included patients from diverse social and ethnic backgrounds, degrees of illness severity and duration; no concerns over adequacy. Overall assessment of confidence was moderate due to the methodological limitations and minor concerns over relevance.</p></div><div id="niceng206er1.s1.1.6.2.1.4"><h5>Review finding 4: Need for understanding & advocacy</h5><p>When reflecting on the role of their GP, ME/CFS patients wanted to be believed. Both patients and carers described their frustration when GPs or practice nurses did not recognise the seriousness of their symptoms or questioned the legitimacy of the condition and those who felt believed GPs described how important this was to their wellbeing. They revealed how facing barriers in gaining recognition of their illness from health professionals both delayed or reduced access to support and greatly exacerbated emotional pressures. Even when bed-bound, patients encountered unsupportive attitudes from health professionals which greatly undermined their chances of wider belief and support. Patients highlighted how lack of access to social care and practical support was exacerbated when health practitioners would not recognise their illness, making a profound impact on their ability to carry out their family caregiving roles. Many encountered doctors that were trained to view ME/CFS as mental health condition, which was dismaying and caused disappointment when doctors made exercises recommendations and psychological attributions or inferences.</p><p>Patients that were referred to specialist services valued being taken seriously and reported positive experiences where GPs had been supportive, while patients reporting less positive experiences described barriers in accessing specialist services including having to take a proactive role in asking for diagnostic tests due to a lack of their GPs’ belief in ME/CFS.</p><p>Patients also faced incredulity and resentment in the workplace, which made them reluctant to report their disability status and request accommodations and tended to push themselves to avoid negative reactions, having to leave their jobs or accepting less-demanding or less-sophisticated work. Because of the constant disbelief they were extremely ambivalent about the process of getting others to make allowances for them, setting limits on asking for help. Some patients had felt the need to ‘hide’ symptoms of ‘CFS/ME’, particularly from their employer, for example using annual leave to manage symptom flare up for a number of years.</p><p>Patients reported that family members, friends and co-workers viewed them as individuals who had no obvious manifestation of symptoms and impairment. This combined with a lack of medical validation meant that family members, friends and co-workers, tended to feel confused, and were prone to question whether the symptoms and impairments were real. Negative responses and a lack of understanding from those not affected by ME/CFS were distressing, created tension and often threatened relationships of both patients and parent carers who felt isolated and hoped for change in the way ME/CFS is received.</p><p>Explanation of quality assessment: Moderate concerns over methodological limitations with serious concerns over one study (related to the use of public data, where lack of detail over participant recruitment and the primary data collection method implicated our ability to assess bias) and moderate concerns over two studies (due to the potential influence of the researcher on the findings not being discussed and lack of transparency on the analysis process in one study and due to concerns over the appropriateness of the data collection method of one study that was a follow-up of a quantitative study with data emerging from open-ended online survey answers) but minor concerns in one study (due to the influence of the researcher not being discussed and concerns about data analysis due to data richness with findings mostly supported by single quotes), very minor concerns in two studies (due to the potential influence of the researcher on the findings not being discussed) and no concerns over one study; no concerns about coherence; very minor concerns over relevance associated with two studies, due to participants in one study being self-identified as having ME/CFS and parent carers of ME/CFS patients in the other study not being limited to people caring for adults, being counterbalanced by the fact that the same information emerged from studies with no such concerns that included patients from diverse social and ethnic backgrounds, degrees of illness severity and duration; no concerns about adequacy. Overall assessment of confidence was moderate due to the methodological concerns identified.</p></div><div id="niceng206er1.s1.1.6.2.1.5"><h5>Review finding 5: Support with Acceptance</h5><p>Time appeared to influence acceptance of the diagnosis, with some participants recalling a gradual acceptance that treatment might not be curative The importance of acceptance in obtaining the most benefit from treatment was highlighted and participants discussed a need to accept changes to their lives as a result of developing ME/CFS, and reflected upon what they had lost or relinquished, including social networks, employment, career and study aspirations and independence. When discussing personal responses patients viewed as key to overcoming challenging periods during treatment, they highlighted being open, positive, proactive, willing to try anything, being able to take a leap of faith and having perseverance. They particularly highlighted the importance of being ‘willing to change’ and being prepared to say goodbye to their old life completely in order to engage fully with treatment.</p><p>Explanation of quality assessment: No concerns over methodological limitations identified in the contributing study; minor concerns about coherence with the theme not clearly emerging from the data as the importance of acceptance and willingness to change were highlighted but not explicitly identified as areas patients need support in; no concerns over relevance; minor concerns over adequacy with sufficient information on the topic available from one study. Overall assessment of confidence was moderate due to concerns about coherence and adequacy.</p></div><div id="niceng206er1.s1.1.6.2.1.6"><h5>Review finding 6: Support during difficult phases of ME/CFS</h5><p>Diagnosis was a difficult time for patients who recalled feeling angry, distressed, frustrated and fearful and that the diagnosis represented a life sentence. Accepting the diagnosis was difficult because of patients’ own negative preconceptions about ME/CFS and the reactions of others. A need for intensive support and follow-up after completion of the diagnostic care path emerged, with many participants having experience the feeling of being left in the dark afterwards for example having to search themselves for caregivers in their neighbourhood. Some patients found initial stages of treatment difficult and explained how during early stages of treatment, advice given by clinicians felt counter-intuitive, and was a departure from the way that symptoms and ‘boom and bust cycles’ had been self-managed prior to accessing services.</p><p>Parent carers reported feelings of uncertainty regarding diagnosis and prognosis following phases of remission and relapse and experienced difficulty in seeing their son/daughter relapse, particularly when there has been improvement prior to relapse, which offered hope that was then lost and exacerbated the anxieties of living in uncertainty.</p><p>Explanation of quality assessment: moderate concerns over methodological limitations with serious concerns in one study (associated with the use of public data where lack of detail on the method of primary data collection and participant recruitment limited our ability to assess the risk of bias), moderate concerns over one study (due to the potential influence of the researcher on the findings not being discussed, concerns over data analysis due to a lack of sufficient information on the data analysis process and concerns over data richness with findings mostly supported by single quotes) and no concerns over the third contributing study; minor concerns about coherence due to the finding emerging from three studies and participants in different studies reporting difficulty or a need for support with different phases of the illness: post diagnosis (two studies), relapse (one study); very minor concerns over relevance due to participants in one study being carers of patients of various ages not limited to adults that were considered too minor to lower the confidence rating as the theme also emerged from two studies with no similar concerns; minor concerns over adequacy due to issues with data richness in one study but sufficient information to support the theme overall.</p><p>Overall assessment of confidence was low due the concerns over methodological limitations, coherence and adequacy.</p></div><div id="niceng206er1.s1.1.6.2.1.7"><h5>Review finding 7: Support from specialists</h5><p>Patients’ experiences were characterised by absence of treatment planning and treatment recommendations and there was continued and ongoing dissatisfaction with treatment when it was administered by a physician that did not specialise in ‘CFS’, as patients encountered misinformation, misdiagnosis and inappropriate treatment recommendations. They wanted more access to specialist services, with some recognising that GPs didn’t have the time to manage their condition.</p><p>Patients that had been referred to specialist services reported that their unsuccessful attempts to resolve symptoms using strategies available in primary care led to their referral to specialist services and they recalled having had hopes and expectations of referral and treatment including confirming diagnosis and managing symptoms better. Patients completing treatment at NHS specialist services felt they had benefited and reported that they had their diagnosis confirmed when they were assessed by the specialist services, which provided information and explanation of ‘CFS/ME’, simultaneously validating and normalising their experiences and symptoms. All participants felt they had benefited from accessing specialist service.</p><p>Explanation of quality assessment: very minor concerns over methodological limitations with very minor concerns over two studies (due to the potential influence of the researcher on the findings not being discussed) and no further concerns in the other two contributing studies; no concerns about coherence with the information reported being consistent across studies; no concerns over relevance; no concerns over adequacy. Overall assessment of confidence was high as the methodological concerns identified were too minor to lower the confidence rating.</p></div><div id="niceng206er1.s1.1.6.2.1.8"><h5>Review Finding 8: Help accessing support</h5><p>Patients had difficulty accessing helpful health-care providers and many encountered disdain, disbelief and lack of knowledge. They described long and frustrating histories of their attempts to access necessary information and services to help them address the consequences of their impairment while finding helpful physicians that could provide a diagnosis and appropriate services often took years of shuffling through various doctors. Both patients and carers highlighted the need for sign posting from the GP, information on local support groups, advice on benefits and referrals to the third sector, reporting that most GPs and practice nurses did not have details of relevant contacts. Applying for welfare benefits while affected by ‘CFS/ME’ was also difficult for patients as the nature of their symptoms meant that complicated forms having to be completed to start the process were especially daunting. Patients frequently found the benefits system complicated and confusing, something to ‘fight’ rather than a source of support. Not being able to predict what they were entitled to, people found out in a hit-and miss way, making arduous applications for benefits that were often refused. Many participants, especially from non-White groups, expressed their needs for much more information on entitlement to help focus their applications on attainable benefits. Unable to claim any benefits whether through lack of support from benefits staff or their current financial situation, patients were often bereft of resources, and enforced total dependence on family or partner. Problems acquiring disability income, concerns about requesting workplace accommodation and difficulties accessing community-based resources (such as meal-delivery programs and specialised transportation options) were also reported. This was because patients had difficulty convincing their physicians of the need for such resources, because they were unaware of these resources or because their health care professionals lacked knowledge of how and why they might benefit from such resources. Where benefits were successfully secured, these were always perceived as helpful. For people beginning to recover and wanting to increase their activities gradually to include limited part time work, income support was seen as too inflexible to allow this. The benefit stopped if people started work, even when they could not work sufficient hours to earn enough money to support themselves. To obtain essential benefits they needed to represent themselves as very impaired, yet in attempting to move back into employment or education, they had to represent themselves as minimally affected.</p><p>Explanation of quality assessment: Minor concerns over methodological limitations with moderate concerns in one study (due to concerns over the appropriateness of the data collection method, the study being a follow-up to a quantitative study with open-ended online responses), but minor concerns in one study (due to the potential influence of the researcher on the findings not being discussed and concerns over data analysis due to data richness with findings mostly supported by single quotes), very minor concerns in another study (due to the potential influence of the researcher on the findings not being discussed) and no concerns in the fourth contributing study; no concerns about coherence, the theme clearly emerging from four studies; very minor concerns over relevance due to concerns identified in one study (due to participants being self-identified as having ME/CFS) but no concerns over the representativeness of the sample in any of the other contributing studies; no concerns over adequacy. Overall assessment of confidence was moderate due to the methodological limitations.</p></div><div id="niceng206er1.s1.1.6.2.1.9"><h5>Review Finding 9: Financial support</h5><p>Financial support was identified as crucial for illness-and life-management, and to maintain education and social relationships. Lacking financial resources made it difficult for patients to cope with ME/CFS, since they had to exert energy to work causing physical consequences. Patients described many financial constrains arising in the absence of other forms of support to live with ME/CFS and there were primary consequences of impoverishment and secondary consequences for social standing, relationships and future entitlements, while limited incomes imposed hard choices about what money would be spent on which depts.</p><p>Explanation of quality assessment: Moderate concerns over methodological limitations with moderate concerns in one study (due to concerns over the appropriateness of the data collection method, the study being a follow-up to a quantitative study with open-ended online responses) and very minor concerns in the other study (due to the potential impact of the researcher on the findings not being discussed); no concerns about coherence with nothing to lower the confidence rating; minor concerns over relevance associated with one of the studies (due to participants being self-identified as having ME/CFS) but the theme also emerging from a study with no similar concerns (reported by patients from diverse social and ethnic backgrounds, degrees of illness severity and duration); minor concerns over adequacy with limited information supporting the finding in one study. Overall assessment of confidence was low due to concerns over methodological limitations, relevance and adequacy.</p></div><div id="niceng206er1.s1.1.6.2.1.10"><h5>Review finding 10: Ongoing health-professional support</h5><p>Patients wanted their GP to be accessible and actively involved in the longer-term management of their condition and reported disengaging from primary care where support was not received. Many patients noted they were not seen by the same medical doctor or caretakers at intake and feedback consultations and emphasised the need for someone who accompanies, informs, advises and assists them at all stages of the care process with whom they can build a relationship of trust, who can because of his specialised knowledge and skills, identify their needs and expectations and answer them. Having an established relationship with a physician was important and highly valued in both the diagnosis and management of the condition while not having such an ongoing relationship was reported to make it difficult to achieve agreement about the symptoms and the diagnosis as patients were often unable to demonstrate the extent of their condition within a consultation at times they may not be experiencing symptoms.</p><p>Explanation of quality assessment: minor concerns over methodological limitations with moderate concerns over one study (due to the potential impact of the researcher on the findings not being discussed and concerns over data analysis with lack of sufficient information on the data analysis process and concerns over data richness with some findings supported by single quotes) but minor concerns over one study (due to concerns over data richness with findings mostly supported by single quotes), very minor concerns over another study (due to the potential impact of the researcher on the findings not being discussed) and no concerns over the fourth contributing study; no concerns about coherence with a clear theme emerging in the contributing studies; no concerns over relevance; no concerns over adequacy, the theme being supported by sufficient information across the studies. Overall assessment of confidence was moderate due to the methodological concerns identified.</p></div><div id="niceng206er1.s1.1.6.2.1.11"><h5>Review finding 11: Social support</h5><p>Patients were physically and mentally isolated struggling to maintain relationships because of their symptoms, with many losing close friends and using social media and online forums, which were helpful, but not commensurate with face-to-face interactions. Feelings of isolation were also reported by carers who had to devote a lot of time to attend patients’ needs. Those completing treatment at NHS specialist services recalled group sessions positively, with benefits including relating to other patients, the opportunity to share experiences and stories, receiving support from group members, supporting others, hearing about their experiences and having their own personal experiences and symptoms validated and normalised. Some thought it important that a group ‘clicked’ in order for the benefits of mutual support to be realised. Hearing from or about individuals who had recovered or substantially improved following ME/CFS was perceived by patients as a potential source of encouragement which could be offered by specialist services.</p><p>Explanation of quality assessment: minor concerns over methodological limitations with moderate concerns over one study (due to concerns over the appropriateness of the data collection method, the study being a follow-up to a quantitative study with open-ended online responses) but minor limitations in one study (due to the potential influence of the researcher not being discussed and concerns over data analysis due to data richness with themes mostly supported by single quotes), very minor limitations in one study (due to the potential influence of the researcher on the findings not being discussed) and no concerns over the fourth contributing study; no concerns about coherence with nothing to lower the confidence rating; minor concerns over relevance with moderate concerns in one study (due to participants being self-identified as having ME/CFS) but with no similar concerns identified in any other contributing study; no concerns over adequacy with sufficient information supporting the theme across contributing studies. Overall assessment of confidence was moderate due to minor concerns over methodological limitations and relevance.</p></div><div id="niceng206er1.s1.1.6.2.1.12"><h5>Review finding 12: Practical support with daily living & social care</h5><p>Lacking caregiver resources made it difficult for patients to cope, since they had to exert energy to work themselves causing physical consequences. Patients felt hope, validation and compassion when there were support systems present to help with daily living activities, with a supportive loved one for instance reported to save a patient valuable resting time. Practical support for personal care, family roles, independent living and support for carers was extremely important for people with moderate to severe illness. Many reported needing help with all personal and domestic tasks: with moving around the house, getting out of bed and chairs, washing and dressing, feeding and self-care, running a home, including meals preparation, shopping or cleaning and how these intensified with child care. Where people could not find alternative ways of getting support for practical tasks, the home environment, where they had to spend most of their time, became not their refuge but a further source of stressful experiences of deteriorating well-being. Social care was of paramount importance for patients’ life priorities which often included sustaining their own roles as family caregivers. They highlighted how lack of access to social care and practical support, which is the case for most people with ME/CFS, made a profound impact on their ability to carry out their family caregiving roles, particularly as parents, raising questions about how people will be able to manage their lives with the debilitating symptoms they reported. Without social care support, often partners, parents and sometimes children had to become carers.</p><p>Explanation of quality assessment: Minor concerns over methodological limitations with moderate concerns in one study (due to concerns over the appropriateness of the data collection method, the study being a follow-up to a quantitative study with open-ended online responses) but very minor concerns in the other contributing study where the majority of the information supporting the theme emerged from (due to the role of the researcher not being discussed); no concerns about coherence with nothing to lower the confidence rating; very minor concerns over relevance as although patients of one study were self-identified as having ME/CFS, the sample of the study contributing the most information to this theme included patients from diverse social and ethnic backgrounds, degrees of illness severity and duration, recruited through ME/CFS support groups and selected by clinicians and there were no concerns over the accuracy of their diagnosis; no concerns over adequacy with sufficient information supporting the theme. Overall assessment of confidence was moderate due to the concerns over methodological limitations and concerns over relevance were too minor to further lower the confidence rating.</p></div><div id="niceng206er1.s1.1.6.2.1.13"><h5>Review finding 13: Need for tailored and accessible hospital care</h5><p>Patients highlighted the importance of flexibility when making medical appointments and accommodating treatment programmes around their commitments, lack of which could be a barrier to attendance. They noted travel during the early stages of the illness or when symptoms were severe could be incredibly hard with participants finding the journey stressful and needing to recover after appointments. Some discussed the importance of good public transport links to the specialist service, whilst others felt that they would not have been able to attend appointments without use of a car. Concerns were raised about the ability of those severely affected by ‘CFS/ME’ to access specialist services. Flexibility in the frequency and mode of appointments was valued by participants because of travel burden and symptom fluctuation. The option of having some appointments by telephone was highly valued, particularly when symptom severity or travel problems made attendance difficult. Skype was also mentioned as a possibility.</p><p>Patients who had hospital care also described their need for designated wards for ME/CFS, with environments adapted to their needs, as in keeping light and noise levels low. Some highlighter the limited time for consultation as a barrier to appropriate care provision and another reason for seeking support outside the NHS.</p><p>Explanation of quality assessment: Very minor concerns over methodological limitations with minor concerns in one study (due to the potential impact of the researcher on the findings not being discussed and concerns over data analysis due to data richness, with findings supported by single quotes) but very minor limitations in one study (due to the potential impact of the researcher on the findings not being discussed) and no concerns over the third contributing study; no concerns about coherence, the finding clearly emerging from the three studies; no concerns about relevance; minor concerns about adequacy with information supporting the finding in one study being limited. Overall assessment of confidence was moderate due to minor concerns over adequacy and methodological concerns were too minor to lower the confidence rating.</p></div><div id="niceng206er1.s1.1.6.2.1.14"><h5>Review finding 14: Need for a diagnosis</h5><p>Patients described gaining diagnostic clarity as a step towards regaining self-respect, being able to explain the problem to others and as a positive move towards regaining control of their lives or taking constructive action to improve their symptoms. Achieving a diagnosis was seen as a crucial milestone for most participants as it often led to advice from doctors and other health care professionals with particular knowledge of CFS/ME. However, patients often encountered oppositional health service responses and some therefore decided to use private or alternative health services as a way of getting diagnosis or help, often exacerbating stress, uncertainty and financial pressures. It was also reported that until a diagnosis was gained, social services could not assess their needs.</p><p>Explanation of quality assessment: very minor concerns over methodological limitations with very minor concerns in both contributing studies (due to the role of the researcher not being discussed); no concerns about coherence with nothing to lower the confidence rating; no concerns about relevance; no concerns about adequacy with sufficient information to support the theme emerging from the studies. Overall assessment of confidence was high as concerns over methodological limitations were too minor to lower the confidence rating.</p></div><div id="niceng206er1.s1.1.6.2.1.15"><h5>Review finding 15: Need for a positive diagnosis and future direction</h5><p>When reflecting on the role of their GP, patents wanted to receive a positive diagnosis. They highlighted the need for the diagnosis to be given in a positive way to maintain hope that symptoms can improve. Hearing from or about individuals who had recovered or substantially improved following ME/CFS was perceived as a potential source of encouragement which could be offered by specialist services, while media accounts of individuals who were very severely disabled appeared to be a key source of anxiety. When describing their expectations, a clear tension was evident between wanting and believing in hope for the future and fear that their illness would not improve or might deteriorate, and patients hoped that referral to a specialist service would give them positive direction for the future.</p><p>Explanation of quality assessment: minor concerns over methodological limitations with very minor concerns in two contributing studies (due to the potential impact of the role of the researcher not being discussed) and minor concerns in one study (due to the potential impact of the researcher on the findings not being discussed and concerns about data analysis due to data richness with themes supported by single quotes); no concerns about coherence with nothing to lower the confidence rating; no concerns about relevance; minor concerns about adequacy with limited information supporting the theme in one study but sufficient information emerging from the other studies. Overall assessment of confidence was moderate due to methodological limitations and minor concerns over adequacy.</p></div><div id="niceng206er1.s1.1.6.2.1.16"><h5>Review finding 16: Patient support during medical consultations</h5><p>Patients and carers described how visiting a GP can be a challenging experience, with patients describing difficulty in remembering or articulating their symptoms and how they would take a carer or family member with them to make sense of the consultation. Patients and carers described the important role that carers play in the management of the illness, which included support during a GP consultation.</p><p>Explanation of quality assessment: minor concerns over methodological limitations in the contributing study (due to the potential impact of the researcher on the findings not being discussed and data analysis because of concerns over data richness with themes mostly supported by single quotes); no concerns about coherence with the theme clearly emerging from the data with nothing to lower the confidence rating; no concerns over relevance; moderate concerns over adequacy with relatively limited information to support the theme. Overall assessment of confidence was low due the concerns over data richness impacting the quality of the study’s methodology and adequacy.</p></div><div id="niceng206er1.s1.1.6.2.1.17"><h5>Review finding 17: Advice (for carers) on how to support patients</h5><p>Carers appeared to have a lack of understanding of ‘CFS/ME’ and were frustrated by the patient’s symptoms. They discussed the danger of giving inappropriate advice or support to patients, exacerbating symptoms or pushing the patient to do too much too soon.</p><p>Explanation of quality assessment: minor concerns over methodological limitations in the contributing study (due to the potential impact of the researcher on the findings not being discussed and concerns about data analysis over data richness with themes supported by single quotes); no concerns about coherence, with the theme clearly emerging from the data and nothing to lower the confidence rating; no concerns about relevance; serious concerns about adequacy with very limited information from the study supporting the theme. Overall assessment of confidence was very low due to concerns over methodological limitations and adequacy.</p></div></div><div id="niceng206er1.s1.1.6.2.2"><h5>1.1.6.2.2. Information education and support for children and young people with ME/CFS, their families or carers</h5><div class="iconblock whole_rhythm clearfix ten_col table-wrap" id="figniceng206er1tab4"><a href="/books/NBK579527/table/niceng206er1.tab4/?report=objectonly" target="object" title="Table 4" class="img_link icnblk_img figpopup" rid-figpopup="figniceng206er1tab4" rid-ob="figobniceng206er1tab4"><img class="small-thumb" src="/books/NBK579527/table/niceng206er1.tab4/?report=thumb" src-large="/books/NBK579527/table/niceng206er1.tab4/?report=previmg" alt="Table 4. Review findings for Children and young people." /></a><div class="icnblk_cntnt"><h4 id="niceng206er1.tab4"><a href="/books/NBK579527/table/niceng206er1.tab4/?report=objectonly" target="object" rid-ob="figobniceng206er1tab4">Table 4</a></h4><p class="float-caption no_bottom_margin">Review findings for Children and young people. </p></div></div><div id="niceng206er1.s1.1.6.2.2.1"><h5>Review finding 1: Information about ME/CFS</h5><p>Young people appeared to experience difficulty with a lack of information around the condition from medical professionals involved. Adolescents talked about the intention to fact-find, with reference to carrying out research and to know more about the condition. Reading facts about symptoms was reported to be helpful by adolescents who identified with the information and felt validated by this. Many negative and undesirable emotions were described relating to various aspects of the young people’s experience of ‘CFS’, including the uncertainty around the illness diagnosis and prognosis, with participants reporting that not knowing why they were undergoing many tests made them feel worried and not knowing what to expect made them feel scared. Mothers of adolescents with ME/CFS reported there was a lack of initial guidance or information around the illness and day-to-day management of symptoms that lead to initial confusion and uncertainty about their child’s health and possible diagnosis. Parents reported feelings of uncertainty in regard to prognosis, talking about fears of death when their son/daughter was at his/her worst and parents of adolescents with ME/CFS experiencing eating difficulties felt it would help to know eating problems are ‘normal’ in this population and may help them understand the illness further.</p><p>Explanation of quality assessment: Moderate concerns over methodological limitations with moderate concerns in one study (due to the role of the researcher not being discussed and serious concerns over data richness), serious concerns in another study (associated with the use of public data, where the lack of detail on the primary data collection methods and participant recruitment impacted our ability to assess risk of bias) but minor concerns in three studies (due to the role of the researcher not being discussed in two studies along with lack of sufficient detail over the data analysis process in one study and minor concerns over data richness in the other study and due to the very small sample size and homogenous population of one study); no concerns about coherence; moderate concerns over relevance with minor concerns identified in all contributing studies (due to one study including parent carers of ME/CFS patients that were not limited to the children and young people age stratum, due to the very small sample size and homogenous population of people who attended the same clinic that was limited to people that had recovered, the sample of one study being limited to people with ME/CFS who experienced eating difficulties, one study excluding severely affected individuals and the sample in one study consisting of participants from a feasibility RCT); no concerns about adequacy with sufficient information supporting the theme. Overall assessment of confidence was low due to the methodological limitations of the contributing studies and concerns over relevance.</p></div><div id="niceng206er1.s1.1.6.2.2.2"><h5>Review finding 2: Sources of information: need for digital resources</h5><p>Adolescents with ME/CFS sought ‘official’ sites to establish facts about the condition and talked about the status of those sites as ‘reliable’. For the majority, this included National Health Service (NHS) websites, and in some cases also Action for ME, Association of Young people with ME/Chronic Fatigue and the ME Association. However, they reported only using the NHS sites a few times with most moving on to explore patient-led and peer-led sites containing subjective, experiential accounts. This included health forums, but also sites that were not necessarily health-related, including Facebook, Instagram, Blogs and YouTube. In contrast to NHS sites, these were accessed regularly and over the long-term, such as a few times per week or every day. For most participants it was the patient-led/peer-led sites that were associated with coping. Anecdotes and endorsements appeared to promote beliefs in the efficacy of strategies, providing inspiration to try out the new strategies. The fact that these sites could be rapidly accessed at any time seemed to provide a great sense of support. Being able to interact with these sites in a quick and undemanding way through a shared language of ‘likes’ and ‘comments was less demanding and more flexible than offline relationships especially in the context of a disabling and fluctuating illness. Technological affordances including videos were described as facilitating a sense of relationship and the fact that these sites could be rapidly accessed at any time seemed to provide a great sense of support.</p><p>Explanation of quality assessment: Minor concerns over methodological limitations in the contributing study (due to the role of the researcher not being discussed and lack of details on the analysis process followed); no concerns about coherence with the theme clearly emerging from the study and nothing to lower the confidence rating; minor concerns over relevance as the study excluded severely affected individuals; no concerns about adequacy with sufficient information to support the theme. Overall assessment of confidence was moderate due to concerns over methodology and relevance.</p></div><div id="niceng206er1.s1.1.6.2.2.3"><h5>Review finding 3: Types of information</h5><p>Adolescents with ME/CFS talked about the status of official websites they were accessing as ‘reliable’, but felt that NHS sites were not user-friendly, as they used medical terminology, lacked depth and their content remained unchanged. Regularly accessed sites (i.e. patient-led/peer-led) used ingroup terms and phrases which were accessible and appealing, were considered to offer greater level of depth and were constantly updated. They preferred the numerous accounts and story-telling approach of patient-led/peer-led and non-health-related sites and which provided support with the psychological difficulties they often experienced, encouraged them to open up and seek help offline and the technological affordances of videos.</p><p>Explanation of quality assessment: Minor concerns over methodological limitations in the contributing study (due to the role of the researcher not being discussed and lack of details on the analysis process followed); no concerns about coherence with nothing in the study to lower the confidence rating in the finding; minor concerns about relevance as the study excluded severely affected individuals; no concerns about adequacy with sufficient information to support the theme. Overall assessment of confidence was moderate due to concerns over methodological limitations and relevance.</p></div><div id="niceng206er1.s1.1.6.2.2.4"><h5>Review finding 4: Need for validation and advocacy</h5><p>Young people appeared to experience difficulty with a lack of understanding and awareness around the condition from medical professionals involved. They referred to a fear or actual experiences of disbelief and judgment from others (including teachers and peers), which was particularly difficult for some. Lack of understanding and invalidation from friends was discussed but individuals talked about showing their friends online information to legitimise their illness and help their peers understand and adapt to the illness. Adolescents referred to specialist ME/CFS services reported that specialist medical care was positive, as it enabled them to talk about their illness while their mothers reported that the specialist service recognised and acknowledged the young person’s condition, resulting in a sense of relief and reassurance.</p><p>Parents reported they were often met with disbelief and hostility from medical professionals, that close friends and other family members were sceptical and perplexed by the illness and as a result may find themselves disconnected from others who may not respond well. Parents felt alienated and reported being estranged from friends and family as the role of carers became their priority. Because of a lack of understanding by those who are not immediately impacted by the illness, carers were left feeling alone in their world. Parents report hoping for change in terms of the way ME is received and wish for understanding from others.</p><p>The theme was also supported by participants’ behaviour outside interviews described in one study. As reported by authors, the impression given in participants’ comments prior the interviews was that they felt it was important to recount their story so that the full extent of their difficulties might be recognised, listened to and learnt from by others.</p><p>Explanation of quality assessment: Moderate concerns over methodological limitations with minor concerns in three studies (due to the role of the researcher not being discussed in two studies along with a lack of sufficient detail on the data analysis process in one study, concerns over data richness in the other study and due to the very small sample size and homogenous population of people who attended the same clinic in one study) but serious limitations in the fourth contributing study (related to the use of public data where a lack of detail on participant recruitment and the primary data collection methods implicated our ability to assess risk of bias); no concerns about coherence with nothing to lower the confidence rating; moderate concerns over relevance with minor concerns across contributing studies (due to the exclusion of severely affected individuals from two studies, one of which also consisted of people who had been previously recruited in an RCT, one study including parent carers of ME/CFS patients that were not limited to the children and young people age stratum, due to the aforementioned very small sample size and homogenous population one study that was also limited to people that had recovered, whose views may differ from those with active ME/CFS); no concerns about adequacy. Overall assessment of confidence was low due to methodological limitations and concerns about relevance.</p></div><div id="niceng206er1.s1.1.6.2.2.5"><h5>Review finding 5: Support with acceptance & adaptation</h5><p>Young people with ME/CFS reported that ‘CFS/ME’ put a strain on normal adolescent life, such as their identity and friendships and that accepting that for a time they must reduce their activity levels and adopt a routine was challenging. They commonly reported that ME/CFS symptoms prevented, restricted or interfered with their activities. Not being able to do activities they fully enjoyed or engage in them fully provoked negative emotions such as low mood, frustration, boredom and hopelessness.</p><p>ME/CFS was also reported to impact various aspects of the parents’ identity, such as their roles within their families, relationships and aspects of their lives outside of their families such as their careers. Parents reported taking on roles as carers, advocates for the illness and their children and support their children as educators. Parents described the ways in which their roles within their families have changed to include caretaking responsibilities and the way this has affected their own well-being. The role of parental carers is a balance of providing day-to-day care for the person who is ill while providing affection. Parents may struggle to find ways to provide affection to their children who are often in great pain; in essence ‘ME’ may change the way in which parents relate to their children. Taking a new role results in much of the parent’s time being allotted to caretaking responsibilities. As a result of parents taking a new caretaking role, they reported being distanced from relationships with other family members, from their hobbies and careers. They described how their relationship with their spouse and children changed and distancing is manifested in the relationships within the family unit, with parents reporting that their family plans and habits have changed.</p><p>Explanation of quality assessment: Moderate concerns over methodological limitations with minor concerns in three studies (due to the role of the researcher not being discussed in two studies along with a lack of sufficient detail on the data analysis process in one study and concerns over data richness in the other study, and due to concerns over potential selection bias in the third study as recruitment across a multidisciplinary team meant reasons for declining participation were not clear) but serious concerns over the fourth contributing study (related to the use of public data where a lack of detail on participant recruitment and the primary data collection methods implicated our ability to assess risk of bias); no concerns about coherence, the theme clearly emerging in the studies; moderate concerns over relevance due to minor concerns over all four contributing studies (with severe cases of ME/CFS excluded from two studies and the sample of one of which also consisting of participants from a feasibility RCT which may differ from ME/CFS patients not recruited in the RCT, with the sample of one study being limited to ME/CFS patients with co-morbid low mood and that of one study including carers of ME/CFS patients that were not limited to the children and young people age stratum); no concerns over adequacy with sufficient information to support the theme. Overall assessment of confidence was low due to concerns over methodological limitations and relevance.</p></div><div id="niceng206er1.s1.1.6.2.2.6"><h5>Review finding 6: Management strategies & support with implementation</h5><p>Parents reported a lack of treatments and resources for managing ‘ME’. Young people reported that guidance on how to manage their condition given from specialist medical care brought structure and a sense of normality back to their lives. A few of the mothers of these young people noted that specialist medical care strategies had an impact on the whole family and could be difficult to integrate with their routine lifestyle. Some mothers felt that the ‘CFS/ME’ service reinforced symptom management strategies that they had been trying to get their child to follow and felt that their child would be more likely to listen if techniques were legitimised by a health-care professional.</p><p>Explanation of quality assessment: Moderate concerns over methodological limitations with minor concerns in one study (due to the role of the researcher not being discussed and data richness) but serious concerns in the other contributing study (associated with the use of public data and lack of detail on how the sample was derived, the methods of primary data collection and inability to assess bias); no concerns about coherence with the theme being well grounded in the data with coherent information emerging; minor concerns over relevance with due to minor concerns in both studies (due to the sample in one study consisting of parent carers that were not limited to the stratum of children and young people and the sample of one study consisting of participants from a feasibility RCT which may differ from ME/CFS patients not recruited in the RCT); minor concerns over adequacy associated with aforementioned concerns over data richness. Overall assessment of confidence was low due to methodological limitations and concerns over relevance and adequacy.</p></div><div id="niceng206er1.s1.1.6.2.2.7"><h5>Review finding 7: Mutual patient support</h5><p>Adolescents with ME/CFS felt that building supportive networks, including developing relationships with other young people with ME/CFS could be beneficial and talked about the potential of feeling understood and less alone. Some experienced difficulty talking about the psychological difficulties they often experienced with family, friends and clinicians and reading stories online to seek support. They described the loneliness of the condition and how spending time on patient-led websites helped them develop a connection with others like them and a sense of community which made them feel understood and alleviated this isolation. Young people also reported that meeting and talking to others with ‘CFS’ was helpful in the management of and recovery from the illness.</p><p>Explanation of quality assessment: Moderate concerns over methodological limitations with minor limitations in all contributing studies (due to the role of the researcher not being discussed and lack of details on the analysis process followed in one study, due to the very small sample size and homogenous population of people who attended the same clinic in one study and due to potential selection bias in the other study as recruitment across a multidisciplinary team meant reasons for declining participation were not clear); no concerns about coherence the theme clearly emerging from three studies; moderate concerns over relevance with minor concerns across contributing studies (due to adolescents with severe ME/CFS excluded from one study, all participants having recovered from ME/CFS and potentially holding different opinions to those in the active stage of ME/CFS in one study and participants in one study having co-morbid low mood potentially holding different opinions to those who do not); no concerns over adequacy. Overall assessment of confidence was low due to methodological limitations and concerns over relevance.</p></div><div id="niceng206er1.s1.1.6.2.2.8"><h5>Review finding 8: Educational support</h5><p>Young people felt that better support from education systems could have helped. They described schools and colleges as inflexible, unhelpful, un-empathetic and invalidating and identified this as a cause of increased anxiety and low mood. They particularly reported that teachers had not been very supportive. Mothers of those who had accessed a ME/CFS specialist service discussed the beneficial way in which the service opened channels of dialogue between health-care professionals and education providers in a variety of ways. A letter provided by the ‘CFS/ME’ service confirming a diagnosis enabled mothers to legitimately take their child out of school, request funding for home schooling and more generally inform and gain support from teachers when managing reduced attendance.</p><p>Explanation of quality assessment: Minor concerns over methodological limitations in both contributing studies (due to the role of the researcher not being discussed and concerns over data richness in one study, potential selection bias in the other study as recruitment across a multidisciplinary team meant reasons for declining participation were not clear); no concerns about coherence, the theme clearly emerging from the data; minor concerns relevance associated with both contributing studies (due to the sample in one study consisting of participants from a feasibility RCT which may differ from ME/CFS patients not recruited in the RCT and due to patients in the other study having co-morbid low mood potentially limiting the representativeness of their views for ME/CFS patients without low mood); moderate concerns about adequacy with relatively limited information supporting the theme across studies. Overall assessment of confidence was low due to concerns over methodological limitations, relevance and adequacy.</p></div><div id="niceng206er1.s1.1.6.2.2.9"><h5>Review finding 9: Need for a diagnosis</h5><p>Adolescents described a long period of diagnostic uncertainty as being particularly difficult both in terms of feeling helpless and in terms of feeling disbelieved. Arriving at a diagnostic label for the illness appeared to be a helpful experience for constructing their own meaning and dispelling disbelief from themselves and from others. Mother of adolescents described how a formal diagnosis enabled positive change and steps towards a managed recovery and how confirmation of diagnosis enabled mothers to legitimately take their child out of school, request funding for home schooling and more generally inform and gain support from teachers when managing reduced attendance.</p><p>Explanation of quality assessment: Minor concerns over methodological limitations in both contributing studies (due to the role of the researcher not being discussed and concerns over data richness in one study, due to the small sample size and homogenous population of participants who attended the same clinic of the other study); no concerns about coherence with the theme very clearly emerging from the data in both contributing studies; minor concerns over relevance associated with both contributing studies (due to the sample of one study consisting of participants from a feasibility RCT which may differ from ME/CFS patients not recruited in the RCT; participants in the other study having recovered from ME/CFS and therefore possibly not holding similar opinions to those in the stage of active ME/CFS); minor concerns over adequacy due to the relatively limited information supporting the finding in the studies. Overall assessment of confidence was moderate due to minor concerns over methodological limitations, relevance and adequacy.</p></div><div id="niceng206er1.s1.1.6.2.2.10"><h5>Review finding 10: Tailored approach to care</h5><p>Young people found different treatment approaches helpful and emphasised the importance of an individualised approach. Some talked about finding CBT helpful while others recognised that AM or the combination of CBT with medication could be helpful approaches. The importance of a tailored approach was also highlighted by mothers of adolescent patients who reported that the tailored, patient-centred specialist medical intervention they gained access to via referral to a specialist service enabled positive change and steps towards managed recovery.</p><p>Explanation of quality assessment: Minor concerns over methodological limitations in both the contributing studies (due to the role of the researcher not being discussed and concerns over data richness in one study and potential selection bias in the other study as recruitment across a multidisciplinary team meant reasons for declining participation were not clear); no concerns about coherence with nothing to lower the confidence rating; minor concerns over relevance with minor concerns in both contributing studies (due to the sample in one study consisting of participants from a feasibility RCT which may differ from ME/CFS patients not recruited in the RCT and because patients in the other study had co-morbid low mood which potentially limits the representativeness of their views for ME/CFS patients without low mood and it is unclear whether the information on the importance of an individualised approach to care reported is in relation to their ME/CFS or low mood); moderate concerns over adequacy with relatively limited information supporting the theme. Overall assessment of confidence was low due to concerns over methodological limitations, relevance and adequacy.</p></div><div id="niceng206er1.s1.1.6.2.2.11"><h5>Review finding 11: Referral to specialist services</h5><p>Prior to accessing specialist services, mothers of adolescent patients with ME/CFS experienced a lack of initial guidance or information around the illness and day-to-day management of symptoms that led to confusion and uncertainty about their child’s health and possible diagnosis. Specialists provided guidance on how to manage ME/CFS which was reported to bring structure and a sense of normality back to lives of young people. Mothers reported the initial assessment appointment with the ‘CFS/ME’ service as a positive experience, which was useful and helpful and how referral to a specialist service gave families access to an informative team of experts, for some a formal diagnosis, and for all a tailored, patient centred specialist medical intervention that had not been available earlier which enabled positive change and steps towards managed recovery.</p><p>Mothers reported that the specialist service recognised and acknowledged the young person’s condition, resulting in a sense of relief and reassurance. Mothers felt that symptoms were now understood and that they would receive help. Adolescents reported that specialist medical care was positive, as it enabled them to talk about their illness.</p><p>Some mothers felt that the ‘CFS/ME’ service reinforced symptom management strategies that they had been trying to get their child to follow and felt that their child would be more likely to listen if techniques were legitimised by a health-care professional. A few mothers also noted that specialist medical care strategies had an impact on the whole family and could be difficult to integrate with their routine lifestyle.</p><p>Mothers also discussed the beneficial way in which the ‘CFS/ME’ service opened channels of dialogue between health-care professionals and education providers in a variety of ways. A letter provided by the ‘CFS/ME’ service confirming a diagnosis enabled mothers to legitimately take their child out of school, request funding for home schooling and more generally inform and gain support from teachers when managing reduced attendance.</p><p>Explanation of quality assessment: minor concerns over methodological limitations in the contributing study (due to the role of the researcher not being discussed and concerns over data richness); no concerns about coherence with nothing to lower the confidence rating; moderate concerns over relevance with referral to specialist services emerging as a positive and useful experience exclusively from a study aiming to examine that and by people who had accessed a specialist service and not reported as a need of young people with ME/CFS in other studies; no concerns over adequacy with sufficient information to support the theme emerging from the study. Overall assessment of confidence was moderate due to the concerns over methodological limitations and relevance.</p><div class="iconblock whole_rhythm clearfix ten_col fig" id="figniceng206er1fig1" co-legend-rid="figlgndniceng206er1fig1"><a href="/books/NBK579527/figure/niceng206er1.fig1/?report=objectonly" target="object" title="Figure 1" class="img_link icnblk_img figpopup" rid-figpopup="figniceng206er1fig1" rid-ob="figobniceng206er1fig1"><img class="small-thumb" src="/books/NBK579527/bin/niceng206er1f1.gif" src-large="/books/NBK579527/bin/niceng206er1f1.jpg" alt="Figure 1. Theme map of review findings (adults)." /></a><div class="icnblk_cntnt" id="figlgndniceng206er1fig1"><h4 id="niceng206er1.fig1"><a href="/books/NBK579527/figure/niceng206er1.fig1/?report=objectonly" target="object" rid-ob="figobniceng206er1fig1">Figure 1</a></h4><p class="float-caption no_bottom_margin">Theme map of review findings (adults). </p></div></div><div class="iconblock whole_rhythm clearfix ten_col fig" id="figniceng206er1fig2" co-legend-rid="figlgndniceng206er1fig2"><a href="/books/NBK579527/figure/niceng206er1.fig2/?report=objectonly" target="object" title="Figure 2" class="img_link icnblk_img figpopup" rid-figpopup="figniceng206er1fig2" rid-ob="figobniceng206er1fig2"><img class="small-thumb" src="/books/NBK579527/bin/niceng206er1f2.gif" src-large="/books/NBK579527/bin/niceng206er1f2.jpg" alt="Figure 2. Theme map of review findings (additional themes in children/young people)." /></a><div class="icnblk_cntnt" id="figlgndniceng206er1fig2"><h4 id="niceng206er1.fig2"><a href="/books/NBK579527/figure/niceng206er1.fig2/?report=objectonly" target="object" rid-ob="figobniceng206er1fig2">Figure 2</a></h4><p class="float-caption no_bottom_margin">Theme map of review findings (additional themes in children/young people). </p></div></div></div></div></div></div><div id="niceng206er1.s1.1.7"><h4>1.1.7. 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="niceng206er1.s2"><h2 id="_niceng206er1_s2_">2. The committee’s discussion and interpretation of the evidence</h2><p>The committee discussed this evidence with the findings from the evidence reviews on evidence report C: access to care, evidence report B: information for health and social care professionals, evidence report D: diagnosis and evidence report I: multidisciplinary teams and the report on Children and Young people (<a href="/books/NBK579527/bin/niceng206er1_bm1.pdf">Appendix 1</a>) and people with severe ME/CFS (<a href="/books/NBK579527/bin/niceng206er1_bm2.pdf">Appendix 2</a>). Where relevant these sources are noted.</p><div id="niceng206er1.s2.1"><h3>2.1. The quality of the evidence</h3><p>Fifteen qualitative studies were included in the review. The majority of the studies were conducted with adults with ME/CFS, one study included the views of family and carers. Six studies were conducted on adolescents, two of which included the families and carers of participants and two of which excluded severely affected individuals. There was one study conducted exclusively on parent carers caring for children from 5 years old to adults (the majority caring for adult daughters). The information reported in this study was considered to contribute to emerging themes relevant to both strata of adults, and children and young people.</p><p>Confidence in the review findings ranged from high to very low. Main reasons for downgrading were methodological limitations and relevance. The most common methodological limitations identified were insufficient reporting of the role of the researcher in the data collection, insufficient reporting or limitations of the methods of data analysis and insufficient data presented to support the findings. There were concerns regarding the relevance of findings from studies which included subgroups of the review population. For example, the experiences of people with self-identified ME/CFS, those with eating difficulties, suicidal ideation, low mood, and those participating in clinical trials. Although this evidence cannot be generalised to the wider ME/CFS population the committee agreed that it was useful to help to build a more complete picture of the information, education and support needs of all people with ME/CFS.</p><p>Two studies explicitly stated that people with severe ME/CFS were excluded, and the committee considered it unlikely that other studies would have included people with severe ME/CFS due to the difficulties in conducting research in this population.</p><p>Some findings were based on evidence from a small number of studies, this indicates coherence was less clear with concerns about the adequacy of data.</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 should not be overlooked. The committee agreed the findings highlighting the importance of signposting to relevant contacts, financial support, support from caregivers during medical consultations and advice for carers on how to support people with ME/CFS were all commonly identified as areas information was hard to find by people with ME/CFS.</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="niceng206er1.s2.2"><h3>2.2. Findings identified in the evidence synthesis</h3><p>Themes identified for children and young people broadly mirrored those identified for adults. Findings unique to children and young people are highlighted.</p><div id="niceng206er1.s2.2.1"><h4>Information needs</h4><div id="niceng206er1.s2.2.1.1"><h5>Understanding ME/CFS</h5><p>Evidence suggested that people with ME/CFS and their carers need general information about ME/CFS for both themselves and others (families, friends, employers and practitioners), to enable them to develop accurate expectations about the future, relieve feelings of distress caused by the general lack of sufficient information and to educate others in order to gain understanding and empathy. The time following diagnosis of ME/CFS and the early stages of treatment were difficult and people experienced feelings of distress, difficulty with acceptance of diagnosis, of advice given and occasionally a lack of guidance, while phases of relapse were particularly difficult for carers. The committee agreed that being informed about ME/CFS, benefits people with ME/CFS and their carers in many ways. Therefore, the committee recommended that people are provided with up-to-date information throughout the diagnostic and care pathway and this information should be tailored to the person’s individual circumstances and expanded or repeated as required. The committee agreed that as part of the information provided at the start when ME/CFS is suspected, it is important to explain to people presenting with possible symptoms that there is no diagnostic test for ME/CFS and that it is recognised on clinical grounds alone.</p><p>Evidence suggested that a positive direction for the future and the ME/CFS diagnosis being framed in a positive way was important to people with ME/CFS and enabled them to maintain hope for improvement. The committee discussed the ethical considerations regarding health care professionals taking ‘positive’ or ‘optimistic’ approaches. It was considered that striking a balance between fostering realistic hope without exaggerating the chances of recovery and creating false hope was essential. It was the experience of the committee that people with ME/CFS appreciate honesty from health care professionals. The committee also considered it vital that when filling out assessment forms for financial, health and social support, people can be honest about how their condition affects them and not pressured to be optimistic. Therefore, the committee decided to recommend that people are given information about ME/CFS that is balanced and realistic about living with the condition and possible outcome. They recommended people with ME/CFS are advised about the unpredictability of the condition, its impact on their life and need for adjustments, aggravating factors, relapse and remission and possible ways to manage symptoms. They hoped that recommendations on managing relapse would alleviate the difficulties experienced by people with ME/CFS and carers during these periods.</p><p>Evidence suggested people with ME/CFS need support with acceptance of their new life circumstances, their diagnosis and the likely prognosis of their illness in order to maximise the benefit received from treatment. The committee noted the evidence highlighting the importance of acceptance and willingness to change did not explicitly identify them as areas in which people need support. The committee also noted that acceptance was also identified in another review (Evidence review C: access to care) as a barrier to care and that acceptance of the condition is a personal process. It was hoped that and recommendations on providing information to people with ME/CFS would increase understanding of the condition.</p></div><div id="niceng206er1.s2.2.1.2"><h5>Management of ME/CFS</h5><p>Evidence suggested that people need guidance on symptom management. They wanted information on effective and diverse treatment options to choose from, including biomedical and alternative treatments other than those currently offered by the health care system. The committee considered this finding alongside the lack of evidence of clinical effectiveness for many of the interventions reviewed in this guideline. The committee acknowledged the frustration that people felt towards not being given information about all available treatment options, and recognised the risk of people receiving information from resources that give false hope and can result in people investing energy and money on interventions that have no evidence of benefit. The committee agreed it was important that people with ME/CFS are provided with all the information about risks and benefits regarding interventions for symptom management to make an informed decision on whether they may be helpful. Recommendations related to information for people with ME/CFS on interventions for symptom management are discussed further in Evidence review G-Non-pharmacological management. The committee were aware that lack of autonomy over treatment choices has been reported by people with ME/CFS. They noted this was supported in the report <a href="/books/NBK579527/bin/niceng206er1_bm1.pdf">Appendix 1</a> - Children and young people and in Evidence review G-Non-pharmacological management People reported their experiences of being offered unhelpful treatments that they later declined, and of having repeatedly been given advice that was unhelpful and so not followed. This was sometimes perceived by healthcare professionals as getting in the way of their recovery. While noting that every NICE guideline states people have the right to be involved in discussions and make informed decisions about their care the committee agreed it was important to make a recommendation to reinforce the importance of patient choice and the right to decline or withdraw from any part of their management without it affecting any other part of their care.</p></div><div id="niceng206er1.s2.2.1.3"><h5>Delivery of information</h5><p>Evidence suggested that people could benefit from information and resources that are evidence-based and delivered in various formats, such as information leaflets, DVDs, and online information as well as from alternative sources such as media representations of people with ME/CFS. The committee considered the variety of different formats by which information could be delivered and the potential advantages and disadvantages of each. For example, written materials could be taken away and read at a time when the person has more capacity to absorb the information and could be shared with friends/family/colleagues. The committee noted the review finding was downgraded due to concerns regarding coherence, as there were differences both between and within studies in the formats that people preferred. This was in line with the committee’s experience of individual preferences and different formats being effective for different people. The committee noted that the NICE guideline on patient experience (CG138) includes recommendations on giving people information in accessible formats, including both written and oral. However, they considered that people with ME/CFS could benefit from a wider variety of options. Therefore, the committee recommended that information be made available in a variety of formats (for example written materials, electronic and audio) and if possible in their preferred language.</p></div></div><div id="niceng206er1.s2.2.2"><h4>Information needs of children and young people</h4><p>Findings related to the information needs of children and young people with ME/CFS were broadly similar to those of adults. A specific finding related to children and young people was not knowing why they were undergoing many tests or what to expect made them feel scared. The committee considered that for this reason, maintenance of good communication between health care professionals and children and young people with ME/CFS is an important principle of care. They recommended that the voice of the child or young person is heard by taking a child-centered approach with the communication focusing on them and discussing and regularly reviewing with the child or young person how they want to be involved in making decisions about their care (with the acknowledgment that parents and carers may act as advocates).</p><div id="niceng206er1.s2.2.2.1"><h5>Delivery of information</h5><p>Evidence suggested that adolescents used website resources they considered reliable but preferred patient-led sites and social media that contained experiential accounts. These provided a great source of support, could be accessed at any time and facilitated coping. Evidence also suggested having in-depth, reliable and relatable information that is patient friendly and regularly updated can be therapeutic for adolescents. Despite the low quality of the evidence, these findings reflected the experience of the committee. It was considered that social media in particular could help young people feel to connected to others during times when social contact is limited. This was supported by the finding that young people with ME/CFS also reported on the importance of developing a connection with other patients either online or offline and how this alleviated feelings of isolation and benefited recovery. The committee noted the evidence was based on adolescents and no evidence was identified in children. It was also discussed that as well as age, the potential benefits may depend on symptom severity, cognitive ability, individual circumstances and preferences. Therefore, the committee recommended that when providing information for children and young people with ME/CFS, account should be taken of their developmental stage and level of understanding, any disabilities or communication needs. Different formats such as one-to-one discussion, group discussions, written materials and pictures, play, art and music activities and digital media, for example social media should be used where appropriate.</p></div></div><div id="niceng206er1.s2.2.3"><h4>Support needs</h4><div id="niceng206er1.s2.2.3.1"><h5>Being believed</h5><p>Evidence suggested that people with ME/CFS and their carers needed understanding and recognition of ME/CFS from the medical community, employers, colleagues, family and friends. Not being believed was unhelpful in the workplace, in accessing healthcare and social support, and impacted on their well-being and social relationships. Disbelief of the legitimacy of the condition and the need for validation are themes that run throughout the qualitative evidence reviews across the guideline, as well as the reports on children and young people (<a href="/books/NBK579527/bin/niceng206er1_bm1.pdf">Appendix 1</a>), people with severe ME/CFS (<a href="/books/NBK579527/bin/niceng206er1_bm2.pdf">Appendix 2</a>) and Dr Muirhead’s expert testimony (<a href="/books/NBK579527/bin/niceng206er1_bm3.pdf">Appendix 3</a>). The committee prioritised the awareness of ME/CFS and placed it at the front of the guideline. The first section of the guideline sets out principles of care for people with ME/CFS, clearly stating that healthcare professionals should be aware that ME/CFS is a real chronic medical condition that is complex and can have a significant impact on people’s quality of life and this reality should be acknowledged to the person with ME/CFS. The committee hoped that these recommendations would lead to wider belief and support from other important people such as employers, colleagues, family members and friends.</p></div><div id="niceng206er1.s2.2.3.2"><h5>ME/CFS support groups</h5><p>Evidence suggested the time following diagnosis of ME/CFS and the early stages of treatment were difficult and people experienced feelings of distress and difficulty with acceptance of diagnosis. There was uncertainty about advice given to them and sometimes a lack of any guidance. Phases of relapse were particularly difficult for carers to understand and cope with. Despite the low quality of the evidence, the committee considered this finding to be consistent with their own experience and recognised that some people may require extra resources for information and support. The committee also considered this in relation to the finding that people with ME/CFS and their carers felt isolated, struggling to maintain social relationships and could benefit from social interactions and mutual patient support.</p><p>Evidence suggested that people with ME/CFS and their carers needed sign posting to relevant contacts that would help address the impact of ME/CFS, including knowledgeable physicians, information on existing benefits and support and help accessing them. Evidence also suggested that advice on financial support was crucial for illness and life-management of ME/CFS and social relationships. Continuing to work due to a lack of financial resources or financial constraints and without support had physical consequences and negatively influenced coping.</p><p>The committee considered that although the evidence supporting these findings was of low quality, information and support from patient support groups can be invaluable to people with ME/CFS. The committee was aware of unregulated sites that offered questionable advice and claims of treatments for ME/CFS. The committee agreed the importance of making people aware of the support available, so made recommendations to give people with ME/CFS information about self-help groups, support groups and other local and national resources and advice about accessing and applying for benefits.</p><p>The committee could not signpost to any one source about ME/CFS, but they noted that in Evidence review B – Information for health and social care professionals, health care professionals (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. In addition, the committee acknowledged that information and support for people with severe or very severe ME/CFS was limited, and they were aware of the 25% M.E group, a patient group providing advice for people with severe or very severe ME/CFS.</p></div><div id="niceng206er1.s2.2.3.3"><h5>Social care support</h5><p>Evidence suggested that people with ME/CFS needed practical support for both themselves and their carers, including help with personal and domestic tasks and access to social care, lack of which impacted on their ability to manage their lives and maintain their family roles. It was noted that not everyone with ME/CFS has a family or other informal carer. Some are entirely dependent on paid care.</p></div></div><div id="niceng206er1.s2.2.4"><h4>Support needs of families and carers</h4><p>The committee discussed the impact of ME/CFS on other family members acknowledging that it can affect all members of a family (including siblings) and all aspects of family life. They noted the impact varied according to the symptoms and their severity and could fluctuate in alignment with the severity of ME/CFS. The committee noted there is a psychological, physical and emotional impact on families and carers and described below some of the ways they can be affected. Family members might have to take on more (or all) responsibilities in order to allow the person with ME/CFS to effectively manage their energy limits. This may include:
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<ul><li class="half_rhythm"><div>help with personal care - from providing a bowl of water to aid washing to helping with mobility and transfers to/from the bath; assisting to stand from the toilet and from lying to sitting to standing, etc</div></li><li class="half_rhythm"><div>cooking and serving meals</div></li><li class="half_rhythm"><div>household chores, such as cleaning</div></li><li class="half_rhythm"><div>shopping</div></li><li class="half_rhythm"><div>supporting medication use, such as prompting the person when to take medication or helping them prepare medications</div></li><li class="half_rhythm"><div>providing information to HCPs and benefits assessors, where the person with ME/CFS has given consent, including any changes in functional ability or symptoms</div></li><li class="half_rhythm"><div>supporting non-pharmacological interventions, such as passive movement and stretching</div></li><li class="half_rhythm"><div>maintaining a safe and comfortable environment in and out of the home, such as low lighting and low noise</div></li><li class="half_rhythm"><div>planning ahead and prioritising activities and tasks, to reduce the burden on the person with ME/CFS. This may include cancelling planned activities as circumstances or symptoms change</div></li><li class="half_rhythm"><div>Wage earning</div></li><li class="half_rhythm"><div>Childcare including the school run - and the effect on relationship with the child if they are unable to participate in activities.</div></li><li class="half_rhythm"><div>Driving - and especially night driving</div></li><li class="half_rhythm"><div>Attending medical appointments to help with getting to the appointment and comprehending the information given.</div></li></ul></p><p>In addition, feelings of guilt and stress about doing/not doing what is best; anxiety caused by confusion and lack of understanding of the condition; tiredness from taking on extra responsibilities, and lack of sleep, may all contribute to:
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<ul><li class="half_rhythm"><div>stress, exhaustion, and an inability to function properly at work or in education,</div></li><li class="half_rhythm"><div>worry that they should be doing more, better, differently,</div></li><li class="half_rhythm"><div>inability or lack of desire to socialise and engage in ‘normal’ relationships,</div></li><li class="half_rhythm"><div>relationship breakdowns,</div></li><li class="half_rhythm"><div>isolation from wider family and friends,</div></li><li class="half_rhythm"><div>loss of income.</div></li></ul></p><p>Siblings of a young person with ME/CFS will be particularly vulnerable to becoming distracted from school, being tired and inattentive, missing out on opportunities because no-one can support, or accompany them. They may stop bringing friends home because of embarrassment of what friends might see or perceive. They are likely to worry about the future burden on themselves of looking after their sibling when parents are no longer able to do so. Their life choices are likely to be influenced by the impact ME/CFS is having on their family situation.</p><p>Young children of someone with ME/CFS will experience the same impacts as siblings. In addition, even where there is another parent in the house, will play their part as a young carer. They may miss some of their education or not reach their potential.</p><p>The committee agreed that it was important that people and their families and carers were aware of the support available to them. The committee considered that some people may be reluctant to or have reservations about engaging with social care support services due to previous disbelief about the severity of the illness and the level of impact on day-to-day functioning. They noted there are sensitivities in this area, particularly with children and young people and their families (see the discussion on safeguarding in evidence review B: Information for health and social care professionals). The committee wanted to be clear that these recommendations are about accessing support and health care professionals should discuss sensitively with the person and their family and carers how social care and social services may benefit them. If the person decides they would like to access social care services, they and their family and carers should be made aware how to self-refer for a social care assessment or if they prefer a referral should be made by the health or social care professional. The committee made recommendations sign posting to different assessments and support. These included social care needs assessment, highlighting to parents and carers the Children and Families Act 2014 and for young carers, the Young Carers (Needs Assessment) Regulations 2015. In the committee’s experience health and social care professionals were not always aware about the support available to carers and families of people with ME/CFS and they referenced the NICE guideline on supporting adult carers.</p><div id="niceng206er1.s2.2.4.1"><h5>Specialist ME/CFS services</h5><p>Evidence suggested a diagnosis of ME/CFS, often gained through private or alternative health services, enabled patients to gain advice from health professionals and take action towards symptom improvement while a lack of a diagnosis exacerbated psychological and financial pressures and impeded access to social services. People with ME/CFS hoped to be referred to specialist services to overcome the barriers to diagnosis and treatment they encountered in primary care and those who ultimately were, had benefited in ways including diagnosis, validation and information provision. (see Evidence review I: Multidisciplinary care) The importance of receiving an accurate and timely diagnosis is a theme running throughout several of the qualitative reviews in the guideline and specific recommendations related to this are discussed in the Evidence review D: Diagnosis. The committee noted that this finding highlighted the importance of support for people with suspected ME/CFS during the pre-diagnostic stage. Recommendations for pre-diagnostic management are discussed in the Evidence review E: Strategies pre diagnosis.</p></div><div id="niceng206er1.s2.2.4.2"><h5>Continuity of care</h5><p>Evidence suggested that people with ME/CFS need to establish a close, ongoing relationship with their health professional who would be involved in the long-term management of ME/CFS and accompany and advise them at all stages of the care process. The committee noted that the theme of lack of continuity of care was identified as a barrier to care as well as a support need and this fed into discussion of the potential implications for people with ME/CFS and the rationale for the recommendation to allocate a named contact to the person with ME/CFS. see Evidence review C: Access to care and Evidence review I: Multidisciplinary care.</p></div><div id="niceng206er1.s2.2.4.3"><h5>Advocacy and support with communication</h5><p>Evidence suggested that GP consultations were challenging for people with ME/CFS and they could benefit from the presence of their caregiver. The committee discussed the different ways in which GP consultations could be challenging, including articulating symptoms and absorbing and remembering information. The committee considered that the presence of a family member or care giver could offer support to the person with ME/CFS in several ways. They can help to articulate the experiences of the person with ME/CFS, take in or note down information which can later be relayed to the person if they are struggling with concentration during the consultation, and ask questions as well as making the person with ME/CFS feel less anxious and more confident. Therefore, a recommendation was made to involve family members and carers (as appropriate) in discussions and care planning if the person with ME/CFS chooses for them to be included. It was noted that people with ME/CFS can appear quiet but are still able to take in information and they require respect from health care professionals by being spoken to as well as their family members and carers. The committee noted that as good practice health care professionals should check the person’s understanding of each consultation and offer a summary as appropriate to the person’s needs. The importance of accommodations in medical consultations also emerged in the report <a href="/books/NBK579527/bin/niceng206er1_bm2.pdf">Appendix 2</a> – People with severe ME/CFS, where people highlighted the importance of more flexibility with appointments, home visits and the use of technology such as tele-consults and emails which are rarely offered and appear to be an essential communication tool to support people with severe ME/CFS.</p></div></div><div id="niceng206er1.s2.2.5"><h4>Support needs of children and young people</h4><div id="niceng206er1.s2.2.5.1"><h5>Being believed</h5><p>The theme of the need for validation was echoed in the evidence identified for children and young people with ME/CFS. The negative impacts of having experienced disbelief and judgement from medical professionals, as well as family members, peers and teachers were particularly evident in this group. The committee discussed the possible reasons for this. It was suggested that children/young people are continually entering different developmental stages with changing behaviours that may be difficult to distinguish between ‘normal’ and ‘illness’ behaviors. Adults, on the other hand, are more likely to be able to explain their symptoms in terms of their premorbid experiences and abilities. An example was given of a teenager laying in bed for long periods of time, which could be interpreted as ‘normal teenage behaviour’, but for an adult who has always gone to bed and risen at the same time for several years, laying in bed for long periods of time would be more likely to be viewed as uncharacteristic and a potential indicator of illness. The committee considered it to be important that children and young people, are believed and listened to. This supported the recommendation to ensure that the voice of the child or young person is heard by taking a child-centered approach and discussing how they want to be involved in making decisions about their care. The committee also considered that health professionals should be aware that children and young people with ME/CFS may have had negative experiences and to approach communication with the child or young person with sensitivity. A recommendation was made to raise awareness that children and young people may have experienced significant emotional impact from social stigma, disbelief and delay in receiving a diagnosis and as with adults with ME/CFS this may result in a hesitation to engage in health and social care and social services.</p></div><div id="niceng206er1.s2.2.5.2"><h5>Education and training</h5><p>Evidence suggested that lack of support within young people’s educational environment was a source of anxiety and low mood, while better communication between healthcare and education providers enabled patients and carers to gain support and accommodate their needs. Despite the low quality of the evidence supporting the finding, the committee considered it very important as in their experience overall there is currently very little support available for young people and children with ME/CFS in supporting their educational needs. They noted that support from individual education providers is highly variable.</p><p>The committee discussed the potential consequences of a lack of support and understanding from education providers. They were aware that without alternative education options and adaptations some children and young people may leave education with potentially negative consequences on their future. It was highlighted by the committee that there is a legal responsibility to ensure children receive an education, but this does not mean that they must attend a school.</p><p>The committee acknowledged that schools and colleges are high stimulus environments with high physical, cognitive and emotional demands and time in school results in a high level of energy expenditure. The committee acknowledged that that school is a place of activities beyond academic education and that the social element of attending school in person should not be dismissed. The committee agreed that communication between health and social care professionals and training and education services is key to enable understanding of the needs and impairments of people with ME/CFS and provision of appropriate educational support. Therefore, the committee recommended that health and social care professionals should work and communicate closely with social care, training and education services to enable them to understand the needs and impairments of children and young people with ME/CFS, ensure a common understanding of the aims of the person with ME/CFS and discuss a flexible approach to training and education.</p><p>The committee discussed the adjustments and adaptions that could support someone in education or training. These should be planned with the person with ME/CFS and their families and health, social care and education services. The committee noted that ME/CFS can be an invisible condition, people with ME/CFS may appear well and it can be difficult for people to understand that adaptions are needed. They noted that children and young people as a rule want to fit in and not be singled out from their peers. This can result in children and young people overexerting themselves or not wanting to use aids like wheelchairs.</p><p>All plans for adjustments and adaptions need to be flexible and may need adjusting frequently, potentially daily and especially at the beginning and during post exacerbations. Plans range from reduced hours and workload with a reduced curriculum, excluding physical education and sports sessions. Core subjects may be prioritised and then subjects the child or young person enjoys. All study time should be time led and not task led, homework reduced and prioritized with extensions. Assistance and time extensions for exams are important to consider. As noted, schools and colleges are high stimulus environments and regular rest breaks through day with a quiet designated area, use of time out cards, physical support by keeping classrooms close together, use of a lift pass, use of wheelchairs and some work at home online are useful adaptions. In some children and young people with ME/CFS there may be times (for example, when symptoms are worse) when a move to online and home schooling may be required.</p><p>There are also circumstances where education should be completely suspended for a period of time as the person may not have the capacity for any form of education, for example during periods of severe illness. The committee noted that any return to education should tailored to the individual’s circumstances and be carefully monitored to avoid any flares or relapse.</p><p>The committee noted that education, health and care plans for people up to the age of 25 years can be requested by parents, school or local authorities, but that many people are unaware of the availability of these plans. The committee noted these are legal documents outlining the support a child or young person will receive to meet their special needs across education, health and social care. The committee agreed that parents and carers need to be provided with this information and made a recommendation to give parents and carers information on about education, health and care plans and how to request one from their local authority.</p><p>The committee considered that although education is an important aspect of daily living, there are other important aspects such as home and social activities. The committee agreed that it is important for children and young people to have a balance between time spent on education, or training, home and family life, and social activities and decided to highlight this in the recommendations.</p><p>The committee discussed the lack of understanding about ME/CFS in children and young people and reduced or non-attendance from school can result in safeguarding concerns being raised and this is discussed in Evidence review B – Information for health and social care professionals.</p></div></div><div id="niceng206er1.s2.2.6"><h4>Work/employment</h4><p>Just as children and young people need supporting with education and training, adults need supporting with work and employment. It is important that people are given the opportunity to discuss work and how, if appropriate, what might be making return to work challenging. Adjustments and adaptions may be required to support them (for example, flexible hours, working from home, special equipment) through their occupational health department at work. The Access to work scheme may be able to assist employers with paying for any adjustments.</p></div><div id="niceng206er1.s2.2.7"><h4>Access to care</h4><p>Evidence suggested that hospital care tailored to individual needs, symptom severity and other commitments, in terms of accessibility and flexibility in the frequency, duration and mode of attendance to medical appointments was valued by people with ME/CFS. Themes of individualized care and flexibility around the frequency, duration and mode of medical appointments ran throughout several of the qualitative reviews and are discussed along with the recommendations elsewhere (Evidence review C: Access to care).</p></div><div id="niceng206er1.s2.2.8"><h4>Information and education needs of families and carers</h4><p>The committee noted there was limited evidence directly referring to the information, education and support needs of families and carers. The committee discussed this was an important area and they were aware that some family members and friends, particularly when someone first has symptoms, can find it difficult to understand ME/CFS and the impact of the symptoms. This was reflected in the evidence with carers reporting they could be frustrated by the symptoms people had and lacked an understanding of the illness. They recognised the danger of giving inappropriate advice or support, exacerbating symptoms or pushing the person with ME/CFS to do too much too soon. This is also supported by the Children and young people’s report, where symptoms were reported to worsen where people had been given unhelpful advice (by health-care professionals) such as to go out every day despite not feeling good enough to do so. The report highlights how being pushed and not being given time to rest or recover from symptoms as a result of other people’s unrealistic expectations, including people from the family and school of the person with ME/CFS, could act against effective management.</p><p>The committee considered that families and carers benefit from the opportunity to obtain accurate information about the condition and about ways that they can help the person with ME/CFS and therefore made a recommendation to that they should be given this information. The committee agreed that the sections of the guideline on Principles of care for people with ME/CFS and Information and support provided valuable information for families and carers of people with ME/CFS. In the information and support section of the guideline the recommendations include providing information, where appropriate, to families and carers, not only people with ME/CFS.</p><p>The committee noted that information leaflets for carers do exist, but it is unclear whether these have been formally evaluated and therefore there may be a risk of misinformation. The committee were aware of unregulated sites that offered questionable advice and claims of treatments for ME/CFS. As with the information for people with ME/CFS the committee could not signpost to any one source about ME/CFS, but they noted that in Evidence review B – Information for health and social care professionals. 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. In addition, the committee acknowledged that information and support for people with severe ME/CFS was limited and they were aware of the 25% M.E group, a patient group providing advice for people with severe ME/CFS.</p><p>In the context of families and carers the committee acknowledged that the recommendations highlighting the importance of advocacy and support with communication for people with ME/CFS also support family members and carers. Some committee members were aware of parents that had felt there were occasions when had been perceived as ‘pushy’ or ‘over anxious’. They were wary of their actions being misinterpreted and as a result cautious in how they pursued support for their child. Some parents felt there was an underlying fear that they may be accused of maltreatment or abuse if they are persistent in advocating for their child. Safeguarding is discussed in detail in Evidence review B – Information for health and social care professionals.</p></div></div><div id="niceng206er1.s2.3"><h3>2.3. Cost effectiveness and resource use</h3><p>Cost effectiveness evidence was not sought as this was a qualitative review. The recommendations generally provide guidance regarding the content of information and support specific to people with ME/CFS and their families in line with the general principles of provision of information already established in the existing NICE Patient Experience Guideline and so were not considered likely to have a substantial resource impact over and above this.</p></div><div id="niceng206er1.s2.4"><h3>2.4. Other factors the committee took into account</h3><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 id="niceng206er1.appa"><h2 id="_niceng206er1_appa_">Appendix A. Review protocols</h2><p id="niceng206er1.appa.et1"><a href="/books/NBK579527/bin/niceng206er1-appa-et1.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Review protocol for information, education and support for people with suspected and/or diagnosed ME/CFS, their families and carers</a><span class="small"> (PDF, 233K)</span></p></div><div id="niceng206er1.appb"><h2 id="_niceng206er1_appb_">Appendix B. Literature search strategies</h2><p>This literature search strategy was used for the following review question:
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<ul><li class="half_rhythm"><div>What information, education and support do people with ME/CFS and their families and carers need?</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="bibr" href="#niceng206er1.ref92" rid="niceng206er1.ref92"><sup>92</sup></a></p><p>For more information, please see the <a href="/books/NBK579527/bin/niceng206er1_bm4.pdf">Methodology</a> review published as part of the accompanying documents for this guideline.</p><p id="niceng206er1.appb.et1"><a href="/books/NBK579527/bin/niceng206er1-appb-et1.pdf" class="bk_dwnld_icn bk_dwnld_pdf">B.1. Clinical search literature search strategy</a><span class="small"> (PDF, 258K)</span></p></div><div id="niceng206er1.appc"><h2 id="_niceng206er1_appc_">Appendix C. Qualitative evidence study selection</h2><p id="niceng206er1.appc.et1"><a href="/books/NBK579527/bin/niceng206er1-appc-et1.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Figure 3. Flow chart of qualitative study selection for the review of information, education and support for people with ME/CFS, their families and carers</a><span class="small"> (PDF, 125K)</span></p></div><div id="niceng206er1.appd"><h2 id="_niceng206er1_appd_">Appendix D. Qualitative evidence</h2><p id="niceng206er1.appd.et1"><a href="/books/NBK579527/bin/niceng206er1-appd-et1.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Download PDF</a><span class="small"> (499K)</span></p></div><div id="niceng206er1.appe"><h2 id="_niceng206er1_appe_">Appendix E. GRADE-CERQual tables</h2><p id="niceng206er1.appe.et1"><a href="/books/NBK579527/bin/niceng206er1-appe-et1.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Table 5. Summary of evidence for information education and support for adults with ME/CFS, their families or carers</a><span class="small"> (PDF, 317K)</span></p><p id="niceng206er1.appe.et2"><a href="/books/NBK579527/bin/niceng206er1-appe-et2.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Table 6. Summary of evidence for information education and support for children and young people with ME/CFS, their families or carers</a><span class="small"> (PDF, 238K)</span></p></div><div id="niceng206er1.appf"><h2 id="_niceng206er1_appf_">Appendix F. Excluded studies</h2><p id="niceng206er1.appf.et1"><a href="/books/NBK579527/bin/niceng206er1-appf-et1.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Table 7. Studies excluded from the qualitative review</a><span class="small"> (PDF, 197K)</span></p><p id="niceng206er1.appf.et2"><a href="/books/NBK579527/bin/niceng206er1-appf-et2.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Table 8. Studies identified but not included in the qualitative review due to saturation being reached</a><span class="small"> (PDF, 123K)</span></p></div><div id="niceng206er1.rl.r1"><h2 id="_niceng206er1_rl_r1_">References</h2><dl class="temp-labeled-list"><dl class="bkr_refwrap"><dt>1.</dt><dd><div class="bk_ref" id="niceng206er1.ref1">Aikman
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LP. A phenomenological study of six chronic fatigue immune dysfunction syndrome survivors. Ohio, OH. Ohio university. 1995</div></dd></dl><dl class="bkr_refwrap"><dt>2.</dt><dd><div class="bk_ref" id="niceng206er1.ref2">Anderson
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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></dl><dl class="bkr_refwrap"><dt>3.</dt><dd><div class="bk_ref" id="niceng206er1.ref3">Anderson
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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></dl><dl class="bkr_refwrap"><dt>4.</dt><dd><div class="bk_ref" id="niceng206er1.ref4">Anderson
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VR, Jason
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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></dl><dl class="bkr_refwrap"><dt>5.</dt><dd><div class="bk_ref" id="niceng206er1.ref5">Antcliff
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D, Keeley
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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></dl><dl class="bkr_refwrap"><dt>6.</dt><dd><div class="bk_ref" id="niceng206er1.ref6">Arroll
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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></dl><dl class="bkr_refwrap"><dt>7.</dt><dd><div class="bk_ref" id="niceng206er1.ref7">Asbring
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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></dl><dl class="bkr_refwrap"><dt>8.</dt><dd><div class="bk_ref" id="niceng206er1.ref8">Asbring
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P, Narvanen
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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></dl><dl class="bkr_refwrap"><dt>9.</dt><dd><div class="bk_ref" id="niceng206er1.ref9">Asbring
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P, Narvanen
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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></dl><dl class="bkr_refwrap"><dt>10.</dt><dd><div class="bk_ref" id="niceng206er1.ref10">Ashby
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B, Wright
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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></dl><dl class="bkr_refwrap"><dt>11.</dt><dd><div class="bk_ref" id="niceng206er1.ref11">Ax
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S, Gregg
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VH, Jones
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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></dl><dl class="bkr_refwrap"><dt>12.</dt><dd><div class="bk_ref" id="niceng206er1.ref12">Ax
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S, Gregg
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VH, Jones
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D. Chronic fatigue syndrome: Illness attributions and perceptions of control. Homeostasis in Health and Disease. 1998; 39(1–2):44–51</div></dd></dl><dl class="bkr_refwrap"><dt>13.</dt><dd><div class="bk_ref" id="niceng206er1.ref13">Ax
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S, Gregg
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VH, Jones
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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></dl><dl class="bkr_refwrap"><dt>14.</dt><dd><div class="bk_ref" id="niceng206er1.ref14">Bayliss
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K, Goodall
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M, Chisholm
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A, Fordham
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B, Chew-Graham
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C, Riste
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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></dl><dl class="bkr_refwrap"><dt>15.</dt><dd><div class="bk_ref" id="niceng206er1.ref15">Bayliss
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K, Riste
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L, Band
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R, Peters
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S, Wearden
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A, Lovell
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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></dl><dl class="bkr_refwrap"><dt>16.</dt><dd><div class="bk_ref" id="niceng206er1.ref16">Bayliss
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K, Riste
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L, Fisher
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L, Wearden
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A, Peters
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E, Huibers
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MJH, Bleijenberg
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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></dl><dl class="bkr_refwrap"><dt>18.</dt><dd><div class="bk_ref" id="niceng206er1.ref18">Beasant
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L, Mills
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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></dl><dl class="bkr_refwrap"><dt>19.</dt><dd><div class="bk_ref" id="niceng206er1.ref19">Beaulieu
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MC. Stigma and legitimation in chronic fatigue syndrome: The role of social location. Montreal. McGill University. 2000</div></dd></dl><dl class="bkr_refwrap"><dt>20.</dt><dd><div class="bk_ref" id="niceng206er1.ref20">Bennett
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B, Goldstein
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D, Friedlander
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M, Hickie
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I, Lloyd
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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></dl><dl class="bkr_refwrap"><dt>21.</dt><dd><div class="bk_ref" id="niceng206er1.ref21">Brady
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E, Segar
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J, Sanders
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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></dl><dl class="bkr_refwrap"><dt>22.</dt><dd><div class="bk_ref" id="niceng206er1.ref22">Brigden
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A, Barnett
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J, Parslow
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RM, Beasant
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L, Crawley
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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></dl><dl class="bkr_refwrap"><dt>23.</dt><dd><div class="bk_ref" id="niceng206er1.ref23">Brigden
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A, Parslow
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RM, Gaunt
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D, Collin
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SM, Jones
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A, Crawley
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E. Defining the minimally clinically important difference of the SF-36 physical function subscale for paediatric CFS/ME: Triangulation using three different methods. Health & Quality of Life Outcomes. 2018; 16(1):202 [<a href="/pmc/articles/PMC6194701/" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC6194701</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/30340599" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 30340599</span></a>]</div></dd></dl><dl class="bkr_refwrap"><dt>24.</dt><dd><div class="bk_ref" id="niceng206er1.ref24">Brooks
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JM, Daglish
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J, Wearden
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J, Harris
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A, Ridge
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C, Brooks
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C, Dowrick
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C, Wearden
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NL. Emotional expression and trauma: Relationships to optimism, coping, neuroendocrine, and immune system functioning. Miami. Univeristy of Miami. 1998</div></dd></dl><dl class="bkr_refwrap"><dt>37.</dt><dd><div class="bk_ref" id="niceng206er1.ref37">Davison
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KP, Pennebaker
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JC, de
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AR, Jackson
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CT, Sunnquist
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AR, Jackson
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MdL, Leite
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C, Gargaro
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K, Peters
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K, Band
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SM, Poland
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OA, McQuaid
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M, Siegel
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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></dl><dl class="bkr_refwrap"><dt>90.</dt><dd><div class="bk_ref" id="niceng206er1.ref90">Missen
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R, Patel
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RM, Anderson
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D, Shaw
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RM, Harris
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RM, Shaw
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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></dl><dl class="bkr_refwrap"><dt>124.</dt><dd><div class="bk_ref" id="niceng206er1.ref124">Son
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HM, Park
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DH, Kim
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AL, Sadreddini
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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></dl><dl class="bkr_refwrap"><dt>126.</dt><dd><div class="bk_ref" id="niceng206er1.ref126">Stormorken
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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></dl><dl class="bkr_refwrap"><dt>127.</dt><dd><div class="bk_ref" id="niceng206er1.ref127">Sturge-Jacobs
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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></dl><dl class="bkr_refwrap"><dt>128.</dt><dd><div class="bk_ref" id="niceng206er1.ref128">Sunnquist
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M, Nicholson
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LA, Friedman
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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></dl><dl class="bkr_refwrap"><dt>129.</dt><dd><div class="bk_ref" id="niceng206er1.ref129">Swoboda
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DA. The social construction of contested illness legitimacy: A grounded theory analysis. Qualitative Research in Psychology. 2006; 3(3):233–251</div></dd></dl><dl class="bkr_refwrap"><dt>130.</dt><dd><div class="bk_ref" id="niceng206er1.ref130">Taylor
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AK, Loades
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M, Brigden
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AL, Collin
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SM, Crawley
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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></dl><dl class="bkr_refwrap"><dt>131.</dt><dd><div class="bk_ref" id="niceng206er1.ref131">Taylor
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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></dl><dl class="bkr_refwrap"><dt>132.</dt><dd><div class="bk_ref" id="niceng206er1.ref132">Tevens
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WE. Enigmatic illness and the wounded self: A study of women with fibromyalgia and chronic fatigue syndromes. Canada. University of Toronto. 2004</div></dd></dl><dl class="bkr_refwrap"><dt>133.</dt><dd><div class="bk_ref" id="niceng206er1.ref133">Theorell
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T, Blomkvist
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V, Lindh
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G, Evengard
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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></dl><dl class="bkr_refwrap"><dt>134.</dt><dd><div class="bk_ref" id="niceng206er1.ref134">Travers
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MK, Lawler
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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></dl><dl class="bkr_refwrap"><dt>135.</dt><dd><div class="bk_ref" id="niceng206er1.ref135">Tuck
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I, Human
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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></dl><dl class="bkr_refwrap"><dt>136.</dt><dd><div class="bk_ref" id="niceng206er1.ref136">Tuck
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I, Wallace
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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></dl><dl class="bkr_refwrap"><dt>137.</dt><dd><div class="bk_ref" id="niceng206er1.ref137">Velleman
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S, Collin
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SM, Beasant
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L, Crawley
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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></dl><dl class="bkr_refwrap"><dt>138.</dt><dd><div class="bk_ref" id="niceng206er1.ref138">Ward
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T, Hogan
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K, Stuart
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V, Singleton
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E. The experiences of counselling for persons with ME. Counselling & Psychotherapy Research. 2008; 8(2):73–79</div></dd></dl><dl class="bkr_refwrap"><dt>139.</dt><dd><div class="bk_ref" id="niceng206er1.ref139">Ware
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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></dl><dl class="bkr_refwrap"><dt>140.</dt><dd><div class="bk_ref" id="niceng206er1.ref140">Ware
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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></dl><dl class="bkr_refwrap"><dt>141.</dt><dd><div class="bk_ref" id="niceng206er1.ref141">Ware
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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></dl><dl class="bkr_refwrap"><dt>142.</dt><dd><div class="bk_ref" id="niceng206er1.ref142">Whitehead
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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></dl><dl class="bkr_refwrap"><dt>143.</dt><dd><div class="bk_ref" id="niceng206er1.ref143">Whitehead
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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></dl><dl class="bkr_refwrap"><dt>144.</dt><dd><div class="bk_ref" id="niceng206er1.ref144">Williams
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AM, Christopher
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G, Jenkinson
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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></dl><dl class="bkr_refwrap"><dt>145.</dt><dd><div class="bk_ref" id="niceng206er1.ref145">Wilson
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L, Whitehead
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L, Burrell
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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></dl><dl class="bkr_refwrap"><dt>146.</dt><dd><div class="bk_ref" id="niceng206er1.ref146">Winger
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A, Ekstedt
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M, Wyller
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VB, Helseth
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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></dl><dl class="bkr_refwrap"><dt>147.</dt><dd><div class="bk_ref" id="niceng206er1.ref147">Woodward
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RV, Broom
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DH, Legge
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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></dl></div></div><div class="fm-sec"><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 class="half_rhythm"><a href="/books/about/copyright/">Copyright</a> © NICE 2021.</div><div class="small"><span class="label">Bookshelf ID: NBK579527</span><span class="label">PMID: <a href="https://pubmed.ncbi.nlm.nih.gov/35438860" title="PubMed record of this title" ref="pagearea=meta&targetsite=entrez&targetcat=link&targettype=pubmed">35438860</a></span></div></div><div class="small-screen-prev"></div><div class="small-screen-next"></div></article><article data-type="table-wrap" id="figobniceng206er1tab1"><div id="niceng206er1.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/NBK579527/table/niceng206er1.tab1/?report=objectonly" target="object">View in own window</a></span></p><div class="large_tbl" id="__niceng206er1.tab1_lrgtbl__"><table><tbody><tr><th id="hd_b_niceng206er1.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Objective</th><td headers="hd_b_niceng206er1.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 people with or who are suspected of having ME/CFS and their families and carers.</td></tr><tr><th id="hd_b_niceng206er1.tab1_1_1_2_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Population and setting</th><td headers="hd_b_niceng206er1.tab1_1_1_2_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Adults, children and young people who are diagnosed with ME/CFS, or who are suspected of having ME/CFS by their primary clinician and their families and carers.</td></tr><tr><th id="hd_b_niceng206er1.tab1_1_1_3_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Context</th><td headers="hd_b_niceng206er1.tab1_1_1_3_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Perceptions of people with or who are suspected of having ME/CFS of the information, education and support they require.</td></tr><tr><th id="hd_b_niceng206er1.tab1_1_1_4_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Review strategy</th><td headers="hd_b_niceng206er1.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></article><article data-type="table-wrap" id="figobniceng206er1tab2"><div id="niceng206er1.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/NBK579527/table/niceng206er1.tab2/?report=objectonly" target="object">View in own window</a></span></p><div class="large_tbl" id="__niceng206er1.tab2_lrgtbl__"><table><thead><tr><th id="hd_h_niceng206er1.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:bottom;">Study</th><th id="hd_h_niceng206er1.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:bottom;">Design</th><th id="hd_h_niceng206er1.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:bottom;">Population</th><th id="hd_h_niceng206er1.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:bottom;">Research aim</th><th id="hd_h_niceng206er1.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:bottom;">Comments</th></tr></thead><tbody><tr><td headers="hd_h_niceng206er1.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Bayliss 2016<a class="bibr" href="#niceng206er1.ref15" rid="niceng206er1.ref15"><sup>15</sup></a></td><td headers="hd_h_niceng206er1.tab2_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_niceng206er1.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<p>Patients (n=11), mean age (range): 46 (27 to 71) years; GPs (n=8)</p>
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<p>Patients were recruited from participating GP practices where GPs had been given access to an online ‘CFS/ME’ training module; that involved patient resource packs for use in consultation with new and existing ‘CFS/ME’ patients.</p>
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<p>UK</p>
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<p>Stratum: adults, severity mixed or unclear</p>
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</td><td headers="hd_h_niceng206er1.tab2_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_niceng206er1.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<p>In line with the review protocol, themes emerging from the information provided by the patient population have only been extracted.</p>
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<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>
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<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>
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</td></tr><tr><td headers="hd_h_niceng206er1.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Beasant 2014<a class="bibr" href="#niceng206er1.ref18" rid="niceng206er1.ref18"><sup>18</sup></a></td><td headers="hd_h_niceng206er1.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">In-depth semi-structured face-to-face interviews and thematic analysis.</td><td headers="hd_h_niceng206er1.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<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>
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<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>
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<p>UK</p>
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<p>Stratum: children and young people, mild/moderate severity</p>
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</td><td headers="hd_h_niceng206er1.tab2_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_niceng206er1.tab2_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_niceng206er1.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Brigden 2018<a class="bibr" href="#niceng206er1.ref22" rid="niceng206er1.ref22"><sup>22</sup></a></td><td headers="hd_h_niceng206er1.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">In-depth semi-structured interviews (face-to-face or via Skype) and thematic analysis.</td><td headers="hd_h_niceng206er1.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<p>Adolescents recruited from a specialist paediatric ‘CFS/ME’ service.</p>
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<p>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>
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<p>UK</p>
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<p>Stratum: children and young people, severity mixed or unclear</p>
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</td><td headers="hd_h_niceng206er1.tab2_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_niceng206er1.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<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>
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<p>Exclusion criteria: insufficient proficiency in English to participate in an interview or severely affected.</p>
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</td></tr><tr><td headers="hd_h_niceng206er1.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Broughton 2017<a class="bibr" href="#niceng206er1.ref25" rid="niceng206er1.ref25"><sup>25</sup></a></td><td headers="hd_h_niceng206er1.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<p>Semi-structured interviews (six face-to-face, 10 via telephone) and thematic analysis.</p>
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<p>Cross-sectional design using opportunity sampling.</p>
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</td><td headers="hd_h_niceng206er1.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<p>Adults who were completing treatment for ME/CFS at one of three outpatient NHS specialist ‘CFS/ME’ services.</p>
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<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>
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<p>UK</p>
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<p>Stratum: adults, severity mixed or unclear</p>
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</td><td headers="hd_h_niceng206er1.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_niceng206er1.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. 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_niceng206er1.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Chew-Graham 2008<a class="bibr" href="#niceng206er1.ref32" rid="niceng206er1.ref32"><sup>32</sup></a></td><td headers="hd_h_niceng206er1.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_niceng206er1.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<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>
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<p>UK</p>
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<p>Stratum: adults, severity mixed or unclear</p>
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</td><td headers="hd_h_niceng206er1.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_niceng206er1.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<p>FINE trial was a primary-care-based RCT examining self-help treatment and pragmatic rehabilitation for patients with ME/CFS.</p>
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<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>
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<p>In line with the review protocol, themes emerging from the information provided by the patient population have only been extracted.</p>
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</td></tr><tr><td headers="hd_h_niceng206er1.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">De Carvalho Leite<a class="bibr" href="#niceng206er1.ref38" rid="niceng206er1.ref38"><sup>38</sup></a></td><td headers="hd_h_niceng206er1.tab2_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_niceng206er1.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<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>
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<p>UK</p>
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<p>Stratum: adults, severity mixed or unclear</p>
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</td><td headers="hd_h_niceng206er1.tab2_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_niceng206er1.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<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>
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<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>
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</td></tr><tr><td headers="hd_h_niceng206er1.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Devendorf 2018<a class="bibr" href="#niceng206er1.ref43" rid="niceng206er1.ref43"><sup>43</sup></a></td><td headers="hd_h_niceng206er1.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_niceng206er1.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<p>Patients who self-identify as having ME/CFS and endorsed suicidal ideation (SI) but did not meet depression criteria</p>
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<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>
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<p>USA</p>
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<p>Stratum: adults, severity mixed or unclear</p>
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</td><td headers="hd_h_niceng206er1.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_niceng206er1.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">The study was hosted online using Research Electronic Data Capture.</td></tr><tr><td headers="hd_h_niceng206er1.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Hannon 2012<a class="bibr" href="#niceng206er1.ref58" rid="niceng206er1.ref58"><sup>58</sup></a></td><td headers="hd_h_niceng206er1.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_niceng206er1.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<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>
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<p>UK</p>
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<p>Stratum: adults, severity mixed or unclear</p>
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</td><td headers="hd_h_niceng206er1.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_niceng206er1.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">For the purpose of this review only the information disclosed by patients and carers was extracted.</td></tr><tr><td headers="hd_h_niceng206er1.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Harris 2017<a class="bibr" href="#niceng206er1.ref61" rid="niceng206er1.ref61"><sup>61</sup></a></td><td headers="hd_h_niceng206er1.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_niceng206er1.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<p>Adolescents (n=11); mean age (range): 15 (13–17 years); 8 female</p>
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<p>UK</p>
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<p>Stratum: children and young people, severity mixed or unclear (severe/very severe likely excluded)</p>
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</td><td headers="hd_h_niceng206er1.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">To explore what adolescents felt had caused their problems with eating, whether they were triggers and maintaining factors and what interventions they felt would be helpful.</td><td headers="hd_h_niceng206er1.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<p>Adolescents were given the option to be interviewed alone or with a parent and seven chose to have their mothers present, all of whom contributed to the interview. Information disclosed by the parents relevant to the aim of this review has also been extracted.</p>
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<p>The sample was drawn from a ‘CFS/ME’ specialist hospital service providing regional support for assessment and treatment of over 300 children aged 5–19 years. Potential participants were identified as being eligible by their clinician.</p>
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<p>Adolescents who were housebound i.e. potentially severe/very severe cases were excluded.</p>
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</td></tr><tr><td headers="hd_h_niceng206er1.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Jelbert 2010<a class="bibr" href="#niceng206er1.ref69" rid="niceng206er1.ref69"><sup>69</sup></a></td><td headers="hd_h_niceng206er1.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_niceng206er1.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<p>Five adolescents who were considered to have recovered from ME/CFS.</p>
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<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>
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<p>UK</p>
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<p>Stratum: children and young people, severity mixed or unclear</p>
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</td><td headers="hd_h_niceng206er1.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_niceng206er1.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_niceng206er1.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">McDermott 2011<a class="bibr" href="#niceng206er1.ref87" rid="niceng206er1.ref87"><sup>87</sup></a></td><td headers="hd_h_niceng206er1.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Semi-structured interviews and analysed using the constant comparative method</td><td headers="hd_h_niceng206er1.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<p>Patients (n=20) newly referred to a specialist ‘CFS/ME’ service by their GP; mean age (range): 39 (22–60) years.</p>
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<p>UK</p>
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<p>Stratum: adults, severity mixed or unclear</p>
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</td><td headers="hd_h_niceng206er1.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">To explore the hopes and expectations of patients newly referred to a ‘CFS/ME’ Service in the South of England.</td><td headers="hd_h_niceng206er1.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"></td></tr><tr><td headers="hd_h_niceng206er1.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Mihelicova 2016<a class="bibr" href="#niceng206er1.ref89" rid="niceng206er1.ref89"><sup>89</sup></a></td><td headers="hd_h_niceng206er1.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Secondary analysis of parent-carer interview narratives using Interpretative phenomenological analysis (IPA) (i.e. thematic analysis)</td><td headers="hd_h_niceng206er1.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<p>Parent-carers (n=19) to children from 5-year old to adults; 12 mothers and 7 fathers, primarily caring for adult daughters.</p>
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<p>UK</p>
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<p>Stratum: age and severity mixed or unclear</p>
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</td><td headers="hd_h_niceng206er1.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">To give voices to those who care for individuals with ME and are often stigmatised and inform future research to ensure that parent-carers of individuals with ME have adequate resources and support.</td><td headers="hd_h_niceng206er1.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Interviews had been published in the book ‘Lost Voices from a Hidden Illness’ (Boulton, 2008); a collection of passages from individuals with ME, their significant others and carers that aims to raise awareness of the impact of ME and to allow individual voices to be heard.</td></tr><tr><td headers="hd_h_niceng206er1.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Ryckeghem 2017<a class="bibr" href="#niceng206er1.ref116" rid="niceng206er1.ref116"><sup>116</sup></a></td><td headers="hd_h_niceng206er1.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_niceng206er1.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<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>
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<p>A convenience sample of GPs was recruited from different provinces in Belgium.</p>
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<p>Patients (n=15); median age (range): 45 (33–59 years); GPs (n=15); median age (range): 49 (31–62 years).</p>
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<p>Belgium</p>
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<p>Stratum: adults, severity mixed or unclear</p>
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</td><td headers="hd_h_niceng206er1.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_niceng206er1.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<p>A definitive diagnosis was established following a multi-disciplinary discussion in the diagnostic process.</p>
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<p>The views of patients are only extracted for this review.</p>
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</td></tr><tr><td headers="hd_h_niceng206er1.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Taylor 2005<a class="bibr" href="#niceng206er1.ref131" rid="niceng206er1.ref131"><sup>131</sup></a></td><td headers="hd_h_niceng206er1.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_niceng206er1.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<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>
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<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>
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<p>USA</p>
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<p>Stratum: adults, severity mixed or unclear</p>
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</td><td headers="hd_h_niceng206er1.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_niceng206er1.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><tr><td headers="hd_h_niceng206er1.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Taylor 2017<a class="bibr" href="#niceng206er1.ref130" rid="niceng206er1.ref130"><sup>130</sup></a></td><td headers="hd_h_niceng206er1.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Semi-structured interviews (n=8 conducted at home; n=1 over the phone) and thematic analysis.</td><td headers="hd_h_niceng206er1.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<p>Young people (n=9) with a primary diagnosis of ‘CFS/ME’ and co-morbid low mood; 88.9% female; median age (range): 14 (14–15) years; median illness duration (range): 12 (8.5–37.5) months; median HADS depression score (range): 11.5 (10.5–12.5); median HADS anxiety score (range): 12 (9.5–14).</p>
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<p>Median Chalder fatigue scale score (range): 29 (25–31); mean disability/SF-36 physical function score (range): 45 (30–50)</p>
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<p>UK</p>
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<p>Stratum: children and young people, severity mixed or unclear</p>
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</td><td headers="hd_h_niceng206er1.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">To explore the experiences of young people with ‘CFS/ME’ and depression in order to understand their views on why low mood developed, the impact of having low mood and what they had found to be helpful and unhelpful in treatment.</td><td headers="hd_h_niceng206er1.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<p>Diagnosis established by specialist paediatric service, after a thorough assessment which included screening for other disorders associated with fatigue (NICE 2007; RCPH, 2004).</p>
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<p>Co-morbid low mood was defined as a depression sub-scale score of >9 on HADS either at assessment or at subsequent treatment appointments with the specialist ‘CFS/ME’ service.</p>
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<p>78% (7/9) had <40% school attendance i.e. 2 days or fewer per week.</p>
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</td></tr></tbody></table></div></div></article><article data-type="table-wrap" id="figobniceng206er1tab3"><div id="niceng206er1.tab3" class="table"><h3><span class="label">Table 3</span><span class="title">Review findings for Adults with ME/CFS, their families or carers</span></h3><p class="large-table-link" style="display:none"><span class="right"><a href="/books/NBK579527/table/niceng206er1.tab3/?report=objectonly" target="object">View in own window</a></span></p><div class="large_tbl" id="__niceng206er1.tab3_lrgtbl__"><table><thead><tr><th id="hd_h_niceng206er1.tab3_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:middle;">Main findings</th><th id="hd_h_niceng206er1.tab3_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:middle;">Statement of finding</th></tr></thead><tbody><tr><th headers="hd_h_niceng206er1.tab3_1_1_1_1 hd_h_niceng206er1.tab3_1_1_1_2" id="hd_b_niceng206er1.tab3_1_1_1_1" colspan="2" rowspan="1" style="text-align:left;vertical-align:top;">Information needs</th></tr><tr><td headers="hd_h_niceng206er1.tab3_1_1_1_1 hd_b_niceng206er1.tab3_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Information about ME/CFS<a class="bibr" href="#niceng206er1.ref25" rid="niceng206er1.ref25"><sup>25</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref32" rid="niceng206er1.ref32"><sup>32</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref43" rid="niceng206er1.ref43"><sup>43</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref58" rid="niceng206er1.ref58"><sup>58</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref87" rid="niceng206er1.ref87"><sup>87</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref116" rid="niceng206er1.ref116"><sup>116</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref131" rid="niceng206er1.ref131"><sup>131</sup></a></td><td headers="hd_h_niceng206er1.tab3_1_1_1_2 hd_b_niceng206er1.tab3_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Patients and carers needed general information about ME/CFS for both themselves and others (families, friends, employers and practitioners), to enable them to develop accurate expectations about the future, relieve feelings of distress caused by the general lack of sufficient information both patients and carers experienced and educate others.</td></tr><tr><td headers="hd_h_niceng206er1.tab3_1_1_1_1 hd_b_niceng206er1.tab3_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Type of information: online & evidence-based<a class="bibr" href="#niceng206er1.ref15" rid="niceng206er1.ref15"><sup>15</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref32" rid="niceng206er1.ref32"><sup>32</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref58" rid="niceng206er1.ref58"><sup>58</sup></a></td><td headers="hd_h_niceng206er1.tab3_1_1_1_2 hd_b_niceng206er1.tab3_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Patients and carers could benefit from information leaflets, information and resources that are evidence-based and available online and in DVD format, as well as from alternative sources such as media representations of people with ME/CFS.</td></tr><tr><td headers="hd_h_niceng206er1.tab3_1_1_1_1 hd_b_niceng206er1.tab3_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Advice on symptom management & treatment options<a class="bibr" href="#niceng206er1.ref32" rid="niceng206er1.ref32"><sup>32</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref38" rid="niceng206er1.ref38"><sup>38</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref43" rid="niceng206er1.ref43"><sup>43</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref58" rid="niceng206er1.ref58"><sup>58</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref87" rid="niceng206er1.ref87"><sup>87</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref89" rid="niceng206er1.ref89"><sup>89</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref131" rid="niceng206er1.ref131"><sup>131</sup></a></td><td headers="hd_h_niceng206er1.tab3_1_1_1_2 hd_b_niceng206er1.tab3_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Patients and carers need guidance on symptom management (including self-help strategies and lifestyle advice) and effective and diverse treatment options to choose from, including biomedical and alternative treatments other than those currently offered by the health care system, lack of which can lead to financial costs and even suicidal thoughts.</td></tr><tr><th headers="hd_h_niceng206er1.tab3_1_1_1_1 hd_h_niceng206er1.tab3_1_1_1_2" id="hd_b_niceng206er1.tab3_1_1_5_1" colspan="2" rowspan="1" style="text-align:left;vertical-align:top;">Support needs</th></tr><tr><td headers="hd_h_niceng206er1.tab3_1_1_1_1 hd_b_niceng206er1.tab3_1_1_5_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Need for understanding & advocacy<a class="bibr" href="#niceng206er1.ref15" rid="niceng206er1.ref15"><sup>15</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref25" rid="niceng206er1.ref25"><sup>25</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref38" rid="niceng206er1.ref38"><sup>38</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref43" rid="niceng206er1.ref43"><sup>43</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref58" rid="niceng206er1.ref58"><sup>58</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref89" rid="niceng206er1.ref89"><sup>89</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref116" rid="niceng206er1.ref116"><sup>116</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref131" rid="niceng206er1.ref131"><sup>131</sup></a></td><td headers="hd_h_niceng206er1.tab3_1_1_1_2 hd_b_niceng206er1.tab3_1_1_5_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Patients and carers needed understanding and recognition of ME/CFS from the medical community, employers, colleagues, family and friends, lack of which was unhelpful in the workplace, in accessing healthcare and social support and implicated their well-being and social relationships.</td></tr><tr><td headers="hd_h_niceng206er1.tab3_1_1_1_1 hd_b_niceng206er1.tab3_1_1_5_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Support with acceptance<a class="bibr" href="#niceng206er1.ref25" rid="niceng206er1.ref25"><sup>25</sup></a></td><td headers="hd_h_niceng206er1.tab3_1_1_1_2 hd_b_niceng206er1.tab3_1_1_5_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Patients need support with acceptance of their new life circumstances, their diagnosis and the likely prognosis of their illness in order maximise the benefit received from treatment.</td></tr><tr><td headers="hd_h_niceng206er1.tab3_1_1_1_1 hd_b_niceng206er1.tab3_1_1_5_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Support during difficult phases of ME/CFS<a class="bibr" href="#niceng206er1.ref25" rid="niceng206er1.ref25"><sup>25</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref89" rid="niceng206er1.ref89"><sup>89</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref116" rid="niceng206er1.ref116"><sup>116</sup></a></td><td headers="hd_h_niceng206er1.tab3_1_1_1_2 hd_b_niceng206er1.tab3_1_1_5_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">The time following diagnosis of ME/CFS and the early stages of treatment were difficult times for patients who experienced feelings of distress, difficulty with acceptance of diagnosis, of advice given and occasionally a lack of guidance while phases of relapse were particularly difficult for carers.</td></tr><tr><td headers="hd_h_niceng206er1.tab3_1_1_1_1 hd_b_niceng206er1.tab3_1_1_5_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Support from specialists<a class="bibr" href="#niceng206er1.ref15" rid="niceng206er1.ref15"><sup>15</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref25" rid="niceng206er1.ref25"><sup>25</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref87" rid="niceng206er1.ref87"><sup>87</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref131" rid="niceng206er1.ref131"><sup>131</sup></a></td><td headers="hd_h_niceng206er1.tab3_1_1_1_2 hd_b_niceng206er1.tab3_1_1_5_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Patients hoped to be referred to specialist services to overcome the barriers to diagnosis and treatment they encountered in primary care and those who ultimately were, had benefited in ways including diagnosis, validation and information provision.</td></tr><tr><td headers="hd_h_niceng206er1.tab3_1_1_1_1 hd_b_niceng206er1.tab3_1_1_5_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Help accessing support<a class="bibr" href="#niceng206er1.ref38" rid="niceng206er1.ref38"><sup>38</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref43" rid="niceng206er1.ref43"><sup>43</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref58" rid="niceng206er1.ref58"><sup>58</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref131" rid="niceng206er1.ref131"><sup>131</sup></a></td><td headers="hd_h_niceng206er1.tab3_1_1_1_2 hd_b_niceng206er1.tab3_1_1_5_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Patients and carers needed sign posting to relevant contacts that would help address the consequences of ME/CFS, including knowledgeable physicians, information on existing benefits and support they were entitled to and help accessing them.</td></tr><tr><td headers="hd_h_niceng206er1.tab3_1_1_1_1 hd_b_niceng206er1.tab3_1_1_5_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Financial support<a class="bibr" href="#niceng206er1.ref38" rid="niceng206er1.ref38"><sup>38</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref43" rid="niceng206er1.ref43"><sup>43</sup></a></td><td headers="hd_h_niceng206er1.tab3_1_1_1_2 hd_b_niceng206er1.tab3_1_1_5_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Financial support was crucial for the illness and life-management of ME/CFS and social relationships while having to work due to a lack of financial resources or financial constrains arising due to a lack of other forms of support had physical consequences and negatively influenced coping.</td></tr><tr><td headers="hd_h_niceng206er1.tab3_1_1_1_1 hd_b_niceng206er1.tab3_1_1_5_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Ongoing health professional support<a class="bibr" href="#niceng206er1.ref15" rid="niceng206er1.ref15"><sup>15</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref25" rid="niceng206er1.ref25"><sup>25</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref32" rid="niceng206er1.ref32"><sup>32</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref116" rid="niceng206er1.ref116"><sup>116</sup></a></td><td headers="hd_h_niceng206er1.tab3_1_1_1_2 hd_b_niceng206er1.tab3_1_1_5_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Patients identified the need to establish a close, ongoing relationship with their health professional who would be involved in the long-term management of ME/CFS and accompany and advise them at all stages of the care process.</td></tr><tr><td headers="hd_h_niceng206er1.tab3_1_1_1_1 hd_b_niceng206er1.tab3_1_1_5_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Social support<a class="bibr" href="#niceng206er1.ref25" rid="niceng206er1.ref25"><sup>25</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref43" rid="niceng206er1.ref43"><sup>43</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref58" rid="niceng206er1.ref58"><sup>58</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref87" rid="niceng206er1.ref87"><sup>87</sup></a></td><td headers="hd_h_niceng206er1.tab3_1_1_1_2 hd_b_niceng206er1.tab3_1_1_5_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Patients and carers felt isolated, struggling to maintain social relationships and could benefit from social interactions and mutual patient support.</td></tr><tr><td headers="hd_h_niceng206er1.tab3_1_1_1_1 hd_b_niceng206er1.tab3_1_1_5_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Practical support with daily living & social care<a class="bibr" href="#niceng206er1.ref38" rid="niceng206er1.ref38"><sup>38</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref43" rid="niceng206er1.ref43"><sup>43</sup></a></td><td headers="hd_h_niceng206er1.tab3_1_1_1_2 hd_b_niceng206er1.tab3_1_1_5_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Patients needed practical support for both themselves and their carers, including help with personal and domestic tasks and access to social care, lack of which implicated their ability to manage their lives and maintain their family roles.</td></tr><tr><th headers="hd_h_niceng206er1.tab3_1_1_1_1 hd_h_niceng206er1.tab3_1_1_1_2" id="hd_b_niceng206er1.tab3_1_1_15_1" colspan="2" rowspan="1" style="text-align:left;vertical-align:top;">Further needs</th></tr><tr><td headers="hd_h_niceng206er1.tab3_1_1_1_1 hd_b_niceng206er1.tab3_1_1_15_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Need for tailored and accessible hospital care<a class="bibr" href="#niceng206er1.ref25" rid="niceng206er1.ref25"><sup>25</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref38" rid="niceng206er1.ref38"><sup>38</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref58" rid="niceng206er1.ref58"><sup>58</sup></a></td><td headers="hd_h_niceng206er1.tab3_1_1_1_2 hd_b_niceng206er1.tab3_1_1_15_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Patients emphasised the importance of hospital care that would be tailored to their needs, the severity of their symptoms and other commitments, in terms of accessibility and flexibility in the frequency, the duration and the mode of attendance to medical appointments.</td></tr><tr><td headers="hd_h_niceng206er1.tab3_1_1_1_1 hd_b_niceng206er1.tab3_1_1_15_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Need for a diagnosis<a class="bibr" href="#niceng206er1.ref38" rid="niceng206er1.ref38"><sup>38</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref87" rid="niceng206er1.ref87"><sup>87</sup></a></td><td headers="hd_h_niceng206er1.tab3_1_1_1_2 hd_b_niceng206er1.tab3_1_1_15_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">A diagnosis of ME/CFS- that was often gained through private or alternative health services- enabled patients to gain advice from health professionals and take action towards symptom improvement while a lack of a diagnosis exacerbated their psychological and financial pressures and impeded their access to social services.</td></tr><tr><td headers="hd_h_niceng206er1.tab3_1_1_1_1 hd_b_niceng206er1.tab3_1_1_15_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Need for a positive diagnosis & future direction<a class="bibr" href="#niceng206er1.ref15" rid="niceng206er1.ref15"><sup>15</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref58" rid="niceng206er1.ref58"><sup>58</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref87" rid="niceng206er1.ref87"><sup>87</sup></a></td><td headers="hd_h_niceng206er1.tab3_1_1_1_2 hd_b_niceng206er1.tab3_1_1_15_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Patients reflected on the importance of a positive direction for the future and on the need for the ME/CFS diagnosis to be framed in a positive way to enable them to maintain hope for improvement.</td></tr><tr><td headers="hd_h_niceng206er1.tab3_1_1_1_1 hd_b_niceng206er1.tab3_1_1_15_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Patient support during medical consultations<a class="bibr" href="#niceng206er1.ref58" rid="niceng206er1.ref58"><sup>58</sup></a></td><td headers="hd_h_niceng206er1.tab3_1_1_1_2 hd_b_niceng206er1.tab3_1_1_15_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">GP consultations were challenging for patients who could benefit from the presence of their caregiver.</td></tr><tr><td headers="hd_h_niceng206er1.tab3_1_1_1_1 hd_b_niceng206er1.tab3_1_1_15_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Advice (for carers) on how to support patients<a class="bibr" href="#niceng206er1.ref58" rid="niceng206er1.ref58"><sup>58</sup></a></td><td headers="hd_h_niceng206er1.tab3_1_1_1_2 hd_b_niceng206er1.tab3_1_1_15_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Carers need advice on how to support patients with ME/CFS as they lacked an understanding of the illness and discussed the danger of giving inappropriate advice or support to patients, exacerbating their symptoms.</td></tr></tbody></table></div></div></article><article data-type="table-wrap" id="figobniceng206er1tab4"><div id="niceng206er1.tab4" class="table"><h3><span class="label">Table 4</span><span class="title">Review findings for Children and young people</span></h3><p class="large-table-link" style="display:none"><span class="right"><a href="/books/NBK579527/table/niceng206er1.tab4/?report=objectonly" target="object">View in own window</a></span></p><div class="large_tbl" id="__niceng206er1.tab4_lrgtbl__"><table><thead><tr><th id="hd_h_niceng206er1.tab4_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:bottom;">Main findings</th><th id="hd_h_niceng206er1.tab4_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:bottom;">Statement of finding</th></tr></thead><tbody><tr><th headers="hd_h_niceng206er1.tab4_1_1_1_1 hd_h_niceng206er1.tab4_1_1_1_2" id="hd_b_niceng206er1.tab4_1_1_1_1" colspan="2" rowspan="1" style="text-align:left;vertical-align:top;">Information needs</th></tr><tr><td headers="hd_h_niceng206er1.tab4_1_1_1_1 hd_b_niceng206er1.tab4_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Information about ME/CFS<a class="bibr" href="#niceng206er1.ref18" rid="niceng206er1.ref18"><sup>18</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref23" rid="niceng206er1.ref23"><sup>23</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref61" rid="niceng206er1.ref61"><sup>61</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref69" rid="niceng206er1.ref69"><sup>69</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref89" rid="niceng206er1.ref89"><sup>89</sup></a></td><td headers="hd_h_niceng206er1.tab4_1_1_1_2 hd_b_niceng206er1.tab4_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">A lack of information about ME/CFS and particularly about the symptoms and prognosis of the illness reported by both adolescent patients and their parents contributed to negative and undesirable feelings of uncertainty, fear and worry for both groups of people, while learning about the condition was reported to be helpful, contributing to feelings of validation in adolescents.</td></tr><tr><td headers="hd_h_niceng206er1.tab4_1_1_1_1 hd_b_niceng206er1.tab4_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Sources of information: need for digital resources<a class="bibr" href="#niceng206er1.ref23" rid="niceng206er1.ref23"><sup>23</sup></a></td><td headers="hd_h_niceng206er1.tab4_1_1_1_2 hd_b_niceng206er1.tab4_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Adolescents used website resources they considered reliable but preferred patient-led sites and social media that contained experiential accounts which provided a great source of support that could be accessed at any time and facilitated coping.</td></tr><tr><td headers="hd_h_niceng206er1.tab4_1_1_1_1 hd_b_niceng206er1.tab4_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Types of information<a class="bibr" href="#niceng206er1.ref23" rid="niceng206er1.ref23"><sup>23</sup></a></td><td headers="hd_h_niceng206er1.tab4_1_1_1_2 hd_b_niceng206er1.tab4_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Having in-depth, reliable and relatable, information that is patient friendly and regularly updated can be therapeutic for adolescents.</td></tr><tr><th headers="hd_h_niceng206er1.tab4_1_1_1_1 hd_h_niceng206er1.tab4_1_1_1_2" id="hd_b_niceng206er1.tab4_1_1_5_1" colspan="2" rowspan="1" style="text-align:left;vertical-align:top;">Support needs</th></tr><tr><td headers="hd_h_niceng206er1.tab4_1_1_1_1 hd_b_niceng206er1.tab4_1_1_5_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Need for validation & advocacy<a class="bibr" href="#niceng206er1.ref18" rid="niceng206er1.ref18"><sup>18</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref23" rid="niceng206er1.ref23"><sup>23</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref69" rid="niceng206er1.ref69"><sup>69</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref89" rid="niceng206er1.ref89"><sup>89</sup></a></td><td headers="hd_h_niceng206er1.tab4_1_1_1_2 hd_b_niceng206er1.tab4_1_1_5_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">A lack of understanding and validation of their experience from both medical professionals and their social environment was reported by young people with ME/CFS who felt the need to talk about their illness and often utilised online resources to help others understand; recognition and acknowledgment of the condition from specialist services resulted in a sense of relief in adolescents and parents.</td></tr><tr><td headers="hd_h_niceng206er1.tab4_1_1_1_1 hd_b_niceng206er1.tab4_1_1_5_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Support with acceptance & adaptation<a class="bibr" href="#niceng206er1.ref18" rid="niceng206er1.ref18"><sup>18</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref23" rid="niceng206er1.ref23"><sup>23</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref89" rid="niceng206er1.ref89"><sup>89</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref130" rid="niceng206er1.ref130"><sup>130</sup></a></td><td headers="hd_h_niceng206er1.tab4_1_1_1_2 hd_b_niceng206er1.tab4_1_1_5_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">The acceptance of and adaptation to the lifestyle changes brought by ME/CFS, including changes in their identity, activities and social relationships, appeared challenging for young patients and carers and often impacted their mood and well-being.</td></tr><tr><td headers="hd_h_niceng206er1.tab4_1_1_1_1 hd_b_niceng206er1.tab4_1_1_5_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Management strategies & support with implementation<a class="bibr" href="#niceng206er1.ref18" rid="niceng206er1.ref18"><sup>18</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref89" rid="niceng206er1.ref89"><sup>89</sup></a></td><td headers="hd_h_niceng206er1.tab4_1_1_1_2 hd_b_niceng206er1.tab4_1_1_5_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">A lack of resources for management was reported by parent-carers and where available, specialist guidance on management of ME/CFS and medical care strategies-although potentially difficult to integrate- were reported to positively impact the life of both young people and their families.</td></tr><tr><td headers="hd_h_niceng206er1.tab4_1_1_1_1 hd_b_niceng206er1.tab4_1_1_5_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Mutual patient support<a class="bibr" href="#niceng206er1.ref23" rid="niceng206er1.ref23"><sup>23</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref69" rid="niceng206er1.ref69"><sup>69</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref130" rid="niceng206er1.ref130"><sup>130</sup></a></td><td headers="hd_h_niceng206er1.tab4_1_1_1_2 hd_b_niceng206er1.tab4_1_1_5_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Young people with ME/CFS reported on the importance of developing a connection with other patients either online or offline which provided support, alleviated feelings of isolation and benefited recovery.</td></tr><tr><td headers="hd_h_niceng206er1.tab4_1_1_1_1 hd_b_niceng206er1.tab4_1_1_5_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Educational support<a class="bibr" href="#niceng206er1.ref18" rid="niceng206er1.ref18"><sup>18</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref130" rid="niceng206er1.ref130"><sup>130</sup></a></td><td headers="hd_h_niceng206er1.tab4_1_1_1_2 hd_b_niceng206er1.tab4_1_1_5_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Lack of support within young peoples’ educational environment was a source of anxiety and low mood, while better communication between healthcare and education providers enabled patients and carers to gain support and accommodate their needs.</td></tr><tr><th headers="hd_h_niceng206er1.tab4_1_1_1_1 hd_h_niceng206er1.tab4_1_1_1_2" id="hd_b_niceng206er1.tab4_1_1_11_1" colspan="2" rowspan="1" style="text-align:left;vertical-align:top;">Further needs</th></tr><tr><td headers="hd_h_niceng206er1.tab4_1_1_1_1 hd_b_niceng206er1.tab4_1_1_11_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Need for a diagnosis<a class="bibr" href="#niceng206er1.ref18" rid="niceng206er1.ref18"><sup>18</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref69" rid="niceng206er1.ref69"><sup>69</sup></a></td><td headers="hd_h_niceng206er1.tab4_1_1_1_2 hd_b_niceng206er1.tab4_1_1_11_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">The period before receiving a formal diagnosis was particularly difficult for adolescents with ME/CFS and their carers, while gaining a diagnostic label facilitated steps towards recovery and access to educational support.</td></tr><tr><td headers="hd_h_niceng206er1.tab4_1_1_1_1 hd_b_niceng206er1.tab4_1_1_11_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Tailored approach to care<a class="bibr" href="#niceng206er1.ref18" rid="niceng206er1.ref18"><sup>18</sup></a><sup>,</sup>
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<a class="bibr" href="#niceng206er1.ref130" rid="niceng206er1.ref130"><sup>130</sup></a></td><td headers="hd_h_niceng206er1.tab4_1_1_1_2 hd_b_niceng206er1.tab4_1_1_11_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">The importance of a tailored treatment approach and its impact on recovery was highlighted by adolescent patients and adolescent patient mothers</td></tr><tr><td headers="hd_h_niceng206er1.tab4_1_1_1_1 hd_b_niceng206er1.tab4_1_1_11_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Referral to specialist service<a class="bibr" href="#niceng206er1.ref18" rid="niceng206er1.ref18"><sup>18</sup></a></td><td headers="hd_h_niceng206er1.tab4_1_1_1_2 hd_b_niceng206er1.tab4_1_1_11_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Young people with ME/CFS and their mothers reported how accessing specialist ME/CFS services had benefited them in terms of diagnosis, information and guidance, psychological support, symptom management, treatment and recovery as well as in terms of access to educational support.</td></tr></tbody></table></div></div></article><article data-type="fig" id="figobniceng206er1fig1"><div id="niceng206er1.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%20(adults).&p=BOOKS&id=579527_niceng206er1f1.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 data-src="/books/NBK579527/bin/niceng206er1f1.jpg" alt="Figure 1. Theme map of review findings (adults)." 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 (adults)</span></h3></div></article><article data-type="fig" id="figobniceng206er1fig2"><div id="niceng206er1.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(additional%20themes%20in%20children%2Fyoung%20people).&p=BOOKS&id=579527_niceng206er1f2.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 data-src="/books/NBK579527/bin/niceng206er1f2.jpg" alt="Figure 2. Theme map of review findings (additional themes in children/young people)." 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 (additional themes in children/young people)</span></h3></div></article></div><div id="jr-scripts"><script src="/corehtml/pmc/jatsreader/ptpmc_3.22/js/libs.min.js"> </script><script src="/corehtml/pmc/jatsreader/ptpmc_3.22/js/jr.min.js"> </script></div></div>
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