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Prognosis for myalgic encephalomyelitis and chronic fatigue syndrome
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==‘Recovered’ but with lingering symptoms == In one of the most influential studies on the prognosis in ME/CFS, David Bell followed-up on the adolescents who fell ill during the [[1985 Lyndonville outbreak|Lyndonville outbreak]] in the 1980s. After a period of 13 years, more than a third of the sample considered themselves recovered.<ref name=":20" /> Yet when researchers looked at the symptoms these ‘recovered’ patients reported, they seemed to be much more disabled than healthy controls.<ref name="Brown2012">{{Cite journal | last = Brown | first = Molly M. | last2 = Bell | first2 = David S. | last3 = Jason | first3 = Leonard A. | last4 = Christos | first4 = Constance | last5 = Bell | first5 = David E. | date = Sep 2012 | title = Understanding Long-Term Outcomes of Chronic Fatigue Syndrome|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3940158/|journal=Journal of clinical psychology|volume=68|issue=9|pages=1028–1035|doi=10.1002/jclp.21880|issn=0021-9762|pmc=3940158|pmid=22753044}}</ref> As Bell explains: <blockquote>“Some of the young adults rated their health as ‘good’, while the amount of activity they could perform was minimal. They had become so used to their performance level, they accepted it as their new normal. Unfortunately, many of them, while they described their health as good, they were unable to work full time or carry on other duties.”<ref name=":22">{{Cite news | url=https://www.omf.ngo/2016/08/01/prognosis-of-mecfs/ | title = Prognosis of ME/CFS – by David S. Bell, MD {{!}} Open Medicine Foundation | date = 2016-08-01|work=Open Medicine Foundation|access-date=2018-10-27|language=en-US}}</ref></blockquote>This suggested that 'recovered' ME/CFS patients did not reach their premorbid health, but have simply adjusted to ongoing [[somatic symptoms]]. Similar findings were reported by Reyes et al., who noted that "all patients, including those who reported recovery, stated that they continued to have some CFS-defining symptoms".<ref name="Reyes1999" /> Sankey et al. noted that the improvement patients reported "contrasts greatly with the numbers of symptoms that they were still experiencing when specifically asked. […] although 21 (75%) regarded themselves as fully recovered, they described symptom persistence of [[fatigue]] and [[headache]], [[depression]] and [[Sleep dysfunction|sleep disturbance]]."<ref name="Sankey2006">{{Cite journal | last = Sankey | first = Alison | last2 = Hill | first2 = Catherine M. | last3 = Brown | first3 = Josie | last4 = Quinn | first4 = Louise | last5 = Fletcher | first5 = Anna | date = Jan 2006 | title = A follow-up study of chronic fatigue syndrome in children and adolescents: symptom persistence and school absenteeism|url=https://www.ncbi.nlm.nih.gov/pubmed/17087490|journal=Clinical Child Psychology and Psychiatry|volume=11|issue=1|pages=126–138|doi=10.1177/1359104506059133|issn=1359-1045|pmid=17087490}}</ref> Another aspect that might have led to an overestimation of recovery in ME/CFS is the fluctuating nature of the disease. [[Anderson]] et al. (2004) for example noted: <blockquote>"Almost all our patients reported symptom fluctuation, including daily, weekly or monthly periods. This, together with our other findings, suggests that symptoms often improve or worsen without altering the overall severity of the illness."<ref name="Andersen2004" /></blockquote>This is a confirmed by a study where ME/CFS symptoms were recovered at three time points in time. Hill et al. found that among patients who reported improvement at time two, about half were worse again at time three.<ref name="Hill1999" /> Finally [[Jenna Adamowicz|Adamowicz]] et al. (2014) noted that ME/CFS studies often use a limited assessment of recovery, for example by simple asking patients if they recovered or by looking at only one measure to assess improvement.<ref>{{Cite journal | last = Adamowicz | first = Jenna L. | last2 = Caikauskaite | first2 = Indre | last3 = Friedberg | first3 = Fred| date = Nov 2014 | title = Defining recovery in chronic fatigue syndrome: a critical review | url =https://www.ncbi.nlm.nih.gov/pubmed/24791749|journal=Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation|volume=23|issue=9|pages=2407–2416|doi=10.1007/s11136-014-0705-9|issn=1573-2649|pmid=24791749}}</ref> This might also have led to an overestimation of recovery in ME/CFS, as patients can improve on one measure and worsen on another. This was seen in a Norwegian study that used multiple measures of recovery. While the total sleep and rest time decreased, work disability increased. While attention during reading worsened, difficulty in driving a car improved.<ref name="Andersen2004" /> Adamowicz et al. pleaded for a multidimensional assessment of recovery that captures a broad-based return to health. [[Frank Twisk|Twisk]] argued that objective measures such as a [[Two-day cardiopulmonary exercise test|cardiopulmonary exercise test]], a [[tilt table test]] or [[neurocognitive tests]], should be used to assess recovery.<ref name="Twisk2014">{{Cite journal | last = Twisk | first = Frank N.M. | date=Nov 2014 | title = A definition of recovery in myalgic encephalomyelitis and chronic fatigue syndrome should be based upon objective measures|url=https://www.ncbi.nlm.nih.gov/pubmed/24935018|journal=Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation|volume=23|issue=9|pages=2417–2418|doi=10.1007/s11136-014-0737-1|issn=1573-2649|pmid=24935018}}</ref> Qualitative studies with [https://www.tandfonline.com/doi/abs/10.1080/09638288.2017.1383518 physician experts] and [https://journals.sagepub.com/doi/full/10.1177/1742395318815965?casa_token=GQPgrp3ZC_wAAAAA%3A0rbSwx2euagMwWwf_E5NdV5NZ0MFD3H6v3gt6aGUliwT8RzhY0YrNZ5cbNFSSTkWsuq8-TYyAB4e-eE patients with ME/CFS] show support for a multidimensional assessment of recovery, which would incorporate measurements of daily functioning, symptomatology, quality of life, and physical functioning.<ref name="Devendorf2019">{{Cite journal | last = Devendorf | first = Andrew R. | author-link = Andrew Devendorf | last2 = Jackson | first2 = Carly T. | authorlink2 = | last3 = Sunnquist | first3 = Madison | author-link3 = Madison Sunnquist | last4 = A. Jason | first4 = Leonard | authorlink4 = Leonard Jason | date = 2019-01-16 | title = Defining and measuring recovery from myalgic encephalomyelitis and chronic fatigue syndrome: the physician perspective|url=https://www.tandfonline.com/doi/full/10.1080/09638288.2017.1383518|journal=Disability and Rehabilitation|language=en|volume=41|issue=2|pages=158–165|doi=10.1080/09638288.2017.1383518|issn=0963-8288|pmc=6123286|pmid=28982247|access-date=|quote=|via=}}</ref><ref name="Devendorf2018">{{Cite journal | last = Devendorf | first = Andrew R | last2 = rown | first2 = Abigail A | last3 = Jason | first3 = Leonard A| date = 2018-12-06 | title = Patients’ hopes for recovery from myalgic encephalomyelitis and chronic fatigue syndrome: Toward a “recovery in” framework | url =https://doi.org/10.1177/1742395318815965|journal=Chronic Illness|language=en-US|pages=174239531881596|doi=10.1177/1742395318815965|issn=1742-3953}}</ref>
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