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Prognosis for myalgic encephalomyelitis and chronic fatigue syndrome
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{{Cleanup|reason=Add newer sources, reduce opinion/commentary including blogs| date = August 2021}} '''Prognosis''' refers to the expected course of a disease and the prospect of recovery.<ref name="MW2">{{Cite web|url=https://dictionary.cambridge.org/dictionary/english/prognosis | title = PROGNOSIS {{!}} meaning in the Cambridge English Dictionary|website=dictionary.cambridge.org|language=en|access-date=2018-10-28}}</ref><ref name="MW">{{Cite web|url=https://www.merriam-webster.com/dictionary/prognosis | title = Definition of PROGNOSIS|website=Merrian-Webster Dictionary|language=en|access-date=2018-10-28}}</ref> According to the most recent review, the prognosis for [[myalgic encephalomyelitis]] and [[chronic fatigue syndrome]] (ME and CFS) is considered to be fairly poor, with only a small minority (a median average of 5%) fully recovering (returning to pre-morbid levels of functioning).<ref name="Cairns2005">{{Cite journal | last = Cairns | first = R. | last2 = Hotopf | first2 = M. | date = Jan 2005 | title = A systematic review describing the prognosis of chronic fatigue syndrome|url=https://www.ncbi.nlm.nih.gov/pubmed/15699087|journal=Occupational Medicine (Oxford, England)|volume=55|issue=1|pages=20–31|doi=10.1093/occmed/kqi013|issn=0962-7480|pmid=15699087}}</ref><ref name="Devendorf2017"/> The majority of patients - 95% - remain ill with significantly impaired functioning, however an estimated 40% of ME/CFS patients do achieve substantial improvements despite not fully recovering.<ref name="Cairns2005" /><ref name="Joyce1997">{{Cite journal | last= Joyce | first = J. | last2 = Hotopf | first2 = M. | last3 = Wessely | first3 = S. | date = Mar 1997 | title = The prognosis of chronic fatigue and chronic fatigue syndrome: a systematic review | url =https://www.ncbi.nlm.nih.gov/pubmed/9093600|journal=QJM: monthly journal of the Association of Physicians|volume=90|issue=3|pages=223–233|issn=1460-2725|pmid=9093600|doi=|pmc= | author-link = | author-link2 = Matthew Hotopf|access-date= | authorlink3 = Simon Wessely | authorlink4 = | authorlink5 = |via=}}</ref> and the prognosis in [[Pediatric myalgic encephalomyelitis and chronic fatigue syndrome|adolescents]] is considered to be better than in adults.<ref name="CDC-prognosis">{{Cite web|url=https://www.cdc.gov/me-cfs/healthcare-providers/presentation-clinical-course/prognosis.html | title = Prognosis {{!}} Presentation and Clinical Course {{!}} Healthcare Providers {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | date = 2018-07-10 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2018-10-28}}</ref><ref>{{Cite journal | last = Rowe | first = Peter C. | last2 = Underhill | first2 = Rosemary A. | last3 = Friedman | first3 = Kenneth J. | last4 = Gurwitt | first4 = Alan | last5 = Medow | first5 = Marvin S. | last6 = Schwartz | first6 = Malcolm S. | last7 = Speight | first7 = Nigel | last8 = Stewart | first8 = Julian M. | last9 = Vallings | first9 = Rosamund | date = 2017 | title=Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer |url =https://www.frontiersin.org/articles/10.3389/fped.2017.00121/full|journal=Frontiers in Pediatrics|language=English|volume=5|doi=10.3389/fped.2017.00121|issn=2296-2360}}</ref> Due to heterogeneity in methodology, such as case definition, length of follow-up and assessment of recovery, the estimated prognosis of [[ME/CFS]] is variable and uncertain.<ref name="CDC-prognosis" /> According to ME expert [[Charles Shepherd]], “there is a wide spectrum of severity, variability and degrees of improvement and deterioration in ME/CFS – and so prognosis can very difficult to predict with any certainty in an individual case."<ref>{{Cite web|url=https://www.meassociation.org.uk/2017/07/what-is-the-prognosis-for-someone-severely-affected-by-m-e-28-july-2017/ | title = What is the prognosis for someone severely affected by M.E.? {{!}} 28 July 2017 | website = [[The ME Association]]|language=en-US|access-date=2018-10-27}}</ref> == Recovery rates == === Follow-up studies === In one of the first extensive studies on the prognosis of ME/CFS, [[Daniel Peterson|Peterson]] et al. studied 65 patients who fulfilled the [[Holmes criteria]] after a one-year follow up. Though 40% reported improvement, none of the patients considered themselves recovered.<ref name="Peterson1991">{{Cite journal | last = Peterson | first = P. K. | last2 = Schenck | first2 = C.H. | last3 = Sherman | first3 = R. | date = May 1991 | title = Chronic fatigue syndrome in Minnesota|url=https://www.ncbi.nlm.nih.gov/pubmed/1861659|journal=Minnesota Medicine|volume=74|issue=5|pages=21–26|issn=0026-556X|pmid=1861659}}</ref> Similar results were reported by an [[Australia|Australian]] team in 1994. They followed up on 103 patients for a mean of 3.2 years. Although the majority reported improvement, less than 6% had completely recovered.<ref name="Wilson1994">{{Cite journal | last = Wilson | first = A. | last2 = Hickie | first2 = I. | last3 = Lloyd | first3 = A. | last4 = Hadzi-Pavlovic | first4 = D. | last5 = Boughton | first5 = C. | last6 = Dwyer | first6 = J. | last7 = Wakefield | first7 = D. | date = 1994-03-19 | title = Longitudinal study of outcome of chronic fatigue syndrome|url=https://www.ncbi.nlm.nih.gov/pubmed/8142830|journal=BMJ (Clinical research ed.)|volume=308|issue=6931 | pages = 756–759|issn=0959-8138|pmc=2539669|pmid=8142830|quote= | authorlink3 = Andrew Lloyd | authorlink4 = | authorlink5 = |via=}}</ref> Two years later, a [[Netherlands|Dutch]] research team from Nijmegen published results for their large sample of 246 ME/CFS patients. After a 1.5 year follow-up only 3% said they had recovered and only 17% reported improvement.<ref name="Vercoulen1996">{{Cite journal | last = Vercoulen | first = J.H. | last2 = Swanink | first2 = C.M. | last3 = Fennis | first3 = J.F. | last4 = Galama | first4 = J.M. | last5 = van der Meer | first5 = J.W. | last6 = Bleijenberg | first6 = G. | date = May 1996 | title = Prognosis in chronic fatigue syndrome: a prospective study on the natural course|url=https://www.ncbi.nlm.nih.gov/pubmed/8778251|journal=Journal of Neurology, Neurosurgery, and Psychiatry|volume=60|issue=5 | pages = 489–494|issn=0022-3050|pmid=8778251|quote= | author-link = Jan Vercoulen|via= | authorlink6 = Gijs Bleijenberg}}</ref> One of the first reports on prognosis using the [[Fukuda criteria]] was published by Saltzstein et al. Because they studied ME/CFS patients in primary care, recovery rates were generally higher, around 20%.<ref name="Saltzstein1998">{{Cite journal | last = Saltzstein | first = B. J. | last2 = Wyshak | first2 = G. | last3 = Hubbuch | first3 = J.T. | last4 = Perry | first4 = J.C. | date = Sep 1998 | title = A naturalistic study of the chronic fatigue syndrome among women in primary care|url=https://www.ncbi.nlm.nih.gov/pubmed/9788031|journal=General Hospital Psychiatry|volume=20|issue=5|pages=307–316|issn=0163-8343|pmid=9788031}}</ref> In 2017, [[Simon Collin|Collin]] & [[Esther Crawley|Crawley]] studied the prognosis of 418 ME/CFS patients who had been treated in a [[United Kingdom|British]] ME/CFS centre and diagnosed according to the [[NICE guidelines|NICE criteria]]. Two and a half years later less than 6% reported they no longer suffered from ME/CFS and 30% claimed their health had deteriorated.<ref name="Collin2017">{{Cite journal | last = Collin | first = Simon M. | last2 = Crawley | first2 = Esther| date = Jul 14, 2017 | title = Specialist treatment of chronic fatigue syndrome/ME: a cohort study among adult patients in England | url =https://www.ncbi.nlm.nih.gov/pubmed/28709432|journal=BMC health services research|volume=17|issue=1 | pages = 488|doi=10.1186/s12913-017-2437-3|issn=1472-6963|pmc=5513420|pmid=28709432|quote= | author-link = Simon Collin | author-link2 = Esther Crawley|via=}}</ref> All of the aforementioned studies used different diagnostic criteria – the [[Holmes criteria|Holmes]], Australian,<ref>{{Cite web|url=https://research-repository.griffith.edu.au/bitstream/handle/10072/55530/87161_1.pdf | title = The adoption of chronic fatigue syndrome/myalgic encephalomyelitis case definitions to assess prevalence: a systematic review | last= Johnston | first = Samantha | authorlink=Samantha Johnston | last2 = Brenu | authorlink2 = Ekua Brenu | date = 2013 | website = griffith.edu.au|publisher=Annals of Epidemiology | page = 3|doi=10.1016/j.annepidem.2013.04.003|archive-url=|archive-date=|access-date=|quote=The Australian definition released in 1990 [2],included the same requirements for fatigue, accompanied by neuropsychiatric symptoms such as short term memory loss and difficulties concentrating. | authorlink3 = Donald Staines | authorlink4 = Sonya Marshall-Gradisnik | first2 = Ekua | last3 = Staines | first3 = Donald | last4 = Marshall-Gradisnik | first4 = Sonya}}</ref> [[Oxford criteria|Oxford]], [[Fukuda criteria|Fukuda]] and [[NICE guidelines|NICE criteria]] respectively – but reported similar poor outcomes, with only a tiny minority of ME/CFS reaching full recovery. === Community-based studies === The poor prognosis observed in tertiary and primary care was confirmed by the epidemiological study in Chicago. Of the 32 ME/CFS patients identified in the late 1990s, 24 were evaluated after a period of approximately 10 years. Of these, two thirds continued to have ME/CFS, 21% had developed exclusionary illnesses, 8% was now labeled as suffering of [[idiopathic chronic fatigue]] and only 4% had remitted.<ref name="Jason2011">{{Cite journal | last= Jason | first = Leonard A. | date = Feb 2011 | title = Natural History of Chronic Fatigue Syndrome|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3171164/|journal=Rehabilitation psychology|volume=56|issue=1|pages=32–42|doi=10.1037/a0022595|issn=0090-5550|pmc=3171164|pmid=21401284}}</ref> === Work-related outcomes and objective measures === Although research has generally used self-reported improvement to estimate prognosis, some studies included more objective measurements such as work-related outcomes. These have generally reported less improvement. [[Jan Vercoulen|Vercoulen]] et al.<ref name="Vercoulen1996" /> and Hill et al.<ref name="Hill1999">{{Cite journal | last = Hill | first = Nancy F. | last2 = Tiersky | first2 = Lana A. | last3 = Scavalla | first3 = Vanessa R. | last4 = Lavietes | first4 = Marc | last5 = Natelson | first5 = Benjamin H. | date = Sep 1999 | title = Natural history of severe chronic fatigue syndrome|url=https://www.ncbi.nlm.nih.gov/pubmed/10489014|journal=Archives of Physical Medicine and Rehabilitation|volume=80|issue=9|pages=1090–1094|issn=0003-9993|pmid=10489014|quote= | author-link = Nancy Hill | authorlink2 = Lana Tiersky | authorlink3 = Vanessa Scavalla | authorlink4 = Marc Lavietes | authorlink5 = Benjamin Natelson|via=}}</ref> for example found no significant change in employment status. Another study from the research team of [[Benjamin Natelson|Benjamin Natelson]] found that unemployment rates increased after 3.5 year follow-up.<ref name="Tiersky2002">{{Cite journal | last = Tiersky | first = Lana A. | last2 = DeLuca | first2 = J. | last3 = Hill | first3 = Nancy | last4 = Dhar | first4 = S.K. | last5 = Johnson | first5 = S.K. | last6 = Lange | first6 = Gudrun | last7 = Rappolt | first7 = G. | last8 = Natelson | first8 = Benjamin H.| date = 2001 | title = Longitudinal assessment of neuropsychological functioning, psychiatric status, functional disability and employment status in chronic fatigue syndrome|url=https://www.ncbi.nlm.nih.gov/pubmed/11388123|journal=Applied Neuropsychology|volume=8|issue=1 | pages = 41–50|doi=10.1207/S15324826AN0801_6|issn=0908-4282|pmid=11388123|quote= | author-link = Lana Tiersky | authorlink2 = | authorlink3 = Nancy Hill | authorlink4 = | authorlink5 = |via= | authorlink7 = | authorlink8 = Benjamin Natelson | authorlink6 = Gudrun Lange}}</ref> A [[Denmark|Danish]] study followed up on 33 patients for an extensive period of 5 years. Though work disability was already high at baseline (77%), this increased even further to 91%.<ref name="Andersen2004">{{Cite journal | last = Andersen | first = M.M. | last2 = Permin | first2 = H. | last3 = Albrecht | first3 = F. | date = Feb 2004 | title = Illness and disability in Danish Chronic Fatigue Syndrome patients at diagnosis and 5-year follow-up | url =https://www.ncbi.nlm.nih.gov/pubmed/15016582|journal=Journal of Psychosomatic Research|volume=56|issue=2|pages=217–229|doi=10.1016/S0022-3999(03)00065-5|issn=0022-3999|pmid=15016582}}</ref> A trend towards a decrease in employment status was also reported by Collin & Crawley, as more patients reported a deterioration than an improvement in hours spent on work, education and social activities<ref name="Collin2017" /> (see table below). {| class="wikitable" | | colspan="4" |<small>Collin & Crawley 2017.</small> |- |<small> </small> |<small>return to work or increase their working hours</small> |<small>increased their hours of, education</small> |<small>increased unpaid work and domestic tasks</small> |<small>increased their social and leisure activities</small> |- |<small>Improvement</small> |<small>24%</small> |<small>12%</small> |<small>36%</small> |<small>35%</small> |- |<small>Decline</small> |<small>-27%</small> |<small>-13%</small> |<small>-32%</small> |<small>-39%</small> |} Other studies have shown that ME/CFS patients do experience improvement on objective measures. Tiersky et al. (2002) for example noted better results on [[neurocognitive testing]] after a period of 3.5 years.<ref name="Tiersky2002" /> [[Peter Rowe|Rowe]] et al. reported a significant improvement in range of motion (ROM) in 53 adolescents with ME/CFS after a two year follow-up.<ref name="Rowe2018">{{Cite journal | last = Rowe | first = Peter C. | last2 = Marden | first2 = Colleen L. | last3 = Flaherty | first3 = Marissa A.K. | last4 = Jasion | first4 = Samantha E. | last5 = Cranston | first5 = Erica M. | last6 = Fontaine | first6 = Kevin R. | last7 = Violand | first7 = Richard L. | date = Sep 2018 | title = Two-Year Follow-Up of Impaired Range of Motion in Chronic Fatigue Syndrome|url=https://www.ncbi.nlm.nih.gov/pubmed/29866593|journal=The Journal of Pediatrics|volume=200|pages=249–253.e1|doi=10.1016/j.jpeds.2018.05.012|issn=1097-6833|pmid=29866593}}</ref> ===The CDC's historically optimistic prognosis === Despite heterogeneity in diagnostic criteria and patient sample, most research is in agreement on the poor prognosis in ME/CFS (see table below). Research by the [[Centers for Disease Control and Prevention]] (CDC) however has controversially reported much higher recovery rates. In 1999, for example, the CDC surveillance system reported a “cumulative probability of recovery” from ME/CFS of 31.4% during the first 5 years of illness and 48.1% during the first 10 years of illness.<ref name="Reyes1999">{{Cite journal | last = Reyes | first = Michele | last2 = Dobbins | first2 = James G. | last3 = Nisenbaum | first3 = Rosane | last4 = Subedar | first4 = Nazerah S. | last5 = Randall | first5 = Bonnie | last6 = Reeves | first6 = William C. | date = Jan 1999 | title = Chronic Fatigue Syndrome Progression and Self-Defined Recovery|url=https://www.tandfonline.com/doi/abs/10.1300/J092v05n01_03|journal=Journal of Chronic Fatigue Syndrome|language=en|volume=5|issue=1|pages=17–27|doi=10.1300/j092v05n01_03|issn=1057-3321}}</ref> Data published in 2003 from the epidemiological research in Wichita, Kansas indicated even higher recovery rates. At the three year follow-up almost 80% no longer fulfilled the diagnostic criteria for ME/CFS, though a large minority (23.1%) were diagnosed with other diseases such as sleep disorders. More than half of the studied ME/CFS patients had experienced partial to total remission during follow-up.<ref name="Nisenbaum2003">{{Cite journal | last = Nisenbaum | first = Rosane | last2 = Jones | first2 = James F | last3 = Unger | first3 = Elizabeth R | last4 = Reyes | first4 = Michele | last5 = Reeves | first5 = William C| date = 2003-10-03 | title = A population-based study of the clinical course of chronic fatigue syndrome|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC269990/|journal=Health and Quality of Life Outcomes|volume=1 | pages = 49|doi=10.1186/1477-7525-1-49|issn=1477-7525|pmid=14613572}}</ref> However, it should be noted that ME/CFS recovery definitions are inherently based on opinions rather than scientific measures, and influenced by factors like the [[Definitions of myalgic encephalomyelitis and chronic fatigue syndrome|diagnostic criteria]] used, etiological perceptions of ME/CFS, age and lifestyle status of patients, and misdiagnosis.<ref name="Devendorf2017">{{Cite journal | last = Devendorf | first = Andrew R | author-link = Andrew Devendorf | last2 = Jackson | first2 = Carly T | last3 = Sunnquist | first3 = Madison | last4 = Jason | first4 = Leonard A| date = 2017-11-28 | title = Approaching recovery from myalgic encephalomyelitis and chronic fatigue syndrome: Challenges to consider in research and practice|url=https://doi.org/10.1177/1359105317742195|journal=Journal of Health Psychology|language=en-US|volume=24|issue=10|pages=1412–1424|doi=10.1177/1359105317742195|issn=1359-1053|pmc=5930162|pmid=29182007|quote= | authorlink2 = |access-date= | authorlink3 = Madison Sunnquist | authorlink4 = Leonard Jason | authorlink5 = |via=}}</ref> {| class="wikitable" |<small>Study</small> |<small>Time period</small> |<small>Number of patients</small> |<small>Recovery rate</small> | colspan="3" |<small>Improvement (excludes recovery)</small> |<small>Deterioriation</small> |- |<small>Peterson et al., 1991.</small><ref name="Peterson1991" /> |<small>1 year</small> |<small>65 (Holmes criteria)</small> |<small>0%</small> | colspan="3" |<small>About 40%</small> |<small> </small> |- |<small>Tirelli et al., 1994.</small><ref>{{Cite journal | last = Tirelli | first = U. | last2 = Marotta | first2 = G. | last3 = Improta | first3 = S. | last4 = Pinto | first4 = A. | date = Dec 1994 | title = Immunological abnormalities in patients with chronic fatigue syndrome|url=https://www.ncbi.nlm.nih.gov/pubmed/7997849|journal=Scandinavian Journal of Immunology|volume=40|issue=6 | pages = 601–608|issn=0300-9475|pmid=7997849}}</ref> |<small>2 years</small> |<small>265 (Holmes criteria)</small> |<small>3%</small> | colspan="3" |<small>8.3%</small> |<small> </small> |- |<small>Wilson et al., 1994.</small><ref name="Wilson1994" /> |<small>3.2 years</small> |<small>103 (Australian criteria)</small> |<small>5.8%</small> | colspan="3" |<small>63%</small> |<small> </small> |- |<small>Bombardier et al., 1995.</small><ref name="Bombardier1995">{{Cite journal | last = Bombardier | first = C.H. | last2 = Buchwald | first2 = D. | date = 1995-10-23 | title = Outcome and prognosis of patients with chronic fatigue vs chronic fatigue syndrome|url=https://www.ncbi.nlm.nih.gov/pubmed/7575071|journal=Archives of Internal Medicine|volume=155|issue=19|pages=2105–2110|issn=0003-9926|pmid=7575071}}</ref> |<small>1.5 years</small> |<small>226 (Holmes criteria)</small> | colspan="5" |<small>“Of the 226 patients who initially met CFS criteria, 103 (46%) continued to meet symptom criteria for CFS at follow-up”</small> |- |<small>Vercoulen et al., 1996.</small><ref name="Vercoulen1996" /> |<small>1.5 years</small> |<small>246 (Oxford criteria)</small> |<small>3%</small> | colspan="3" |<small>17%</small> |<small>20%</small> |- |<small>Ray et al., 1997.</small><ref name="Ray1997">{{Cite journal | last = Ray | first = C. | last2 = Jefferies | first2 = S. | last3 = Weir | first3 = W.R. | date = Oct 1997 | title = Coping and other predictors of outcome in chronic fatigue syndrome: a 1-year follow-up | url =https://www.ncbi.nlm.nih.gov/pubmed/9330240|journal=Journal of Psychosomatic Research|volume=43|issue=4 | pages = 405–415|issn=0022-3999|pmid=9330240}}</ref> |<small>1 year</small> |<small>136 (Oxford definition + PEM, sick less than 6 years)</small> |<small>/</small> | colspan="3" |<small>64.4%</small> |<small>14.8%</small> |- |<small>Saltzstein et al., 1998.</small><ref name="Saltzstein1998" /> |<small>2 years</small> |<small>15 (Fukuda criteria)</small> |<small>20%</small> | colspan="3" |<small>40%</small> |<small> </small> |- |<small>Reyes et al., 1999.</small><ref name="Reyes1999" /> |<small>5/10 years</small> |<small>155 (Fukuda criteria)</small> |<small>31.4%/ 48.1%</small> | colspan="3" |<small> </small> |<small> </small> |- |<small>Pheley et al., 1999.</small><ref name="Pheley1999">{{Cite journal | last = Pheley | first = A.M. | last2 = Melby | first2 = D. | last3 = Schenck | first3 = C. | last4 = Mandel | first4 = J. | last5 = Peterson | first5 = P.K. | date = Nov 1999 | title = Can we predict recovery in chronic fatigue syndrome?|url=https://www.ncbi.nlm.nih.gov/pubmed/10589213|journal=Minnesota Medicine|volume=82|issue=11 | pages = 52–56|issn=0026-556X|pmid=10589213}}</ref> |<small>?</small> |<small>177 (Fukuda criteria)</small> |<small>12%</small> | colspan="3" | | |- |<small>Hill et al., 1999.</small><ref name="Hill1999" /> |<small>1.8 years</small> |<small>23 (Holmes and Fukuda criteria)</small> |<small>4%</small> | colspan="3" |<small>39%</small> |<small> </small> |- |<small>Van der Werf et al., 2002.</small><ref name=":19">{{Cite journal | last = van der Werf | first = Sieberen P. | last2 = de Vree | first2 = Berna | last3 = Alberts | first3 = Maurice | last4 = van der Meer | first4 = Jos W.M. | last5 = Bleijenberg | first5 = Gijs | last6 = Netherlands Fatigue Research Group Nijmegen | date = Sep 2002 | title = Natural course and predicting self-reported improvement in patients with chronic fatigue syndrome with a relatively short illness duration|url=https://www.ncbi.nlm.nih.gov/pubmed/12217448|journal=Journal of Psychosomatic Research|volume=53|issue=3 | pages = 749–753|issn=0022-3999|pmid=12217448}}</ref> |<small>1 year</small> |<small>78 (Fukuda CFS or idiopathic fatigue)</small> |<small>8%</small> | colspan="3" |<small>38%</small> |<small>17%</small> |- |<small>Tiersky et al., 2002.</small><ref name="Tiersky2002" /> |<small>3.5 years</small> |<small>35 (Holmes and Fukuda criteria)</small> |<small> </small> | colspan="3" |<small>57%</small> |<small> </small> |- |<small>Nisenbaum et al., 2003.</small><ref name="Nisenbaum2003" /> |<small>1-3 years</small> |<small>24-65 (Fukuda criteria)</small> | colspan="5" |<small>Of the 50 patients who never developed a permanent exclusion, 62% experience a partial or total remission.</small> |- |<small>Andersen et al., 2004.</small><ref name="Andersen2004" /> |<small>5 years</small> |<small>33 (Holmes and Fukuda criteria)</small> | colspan="2" |<small> </small> |<small>15%</small> | colspan="2" |<small>42%</small> |- |<small>Ciccone et al., 2010.</small><ref name=":16">{{Cite journal | last = Ciccone | first = Donald S. | last2 = Chandler | first2 = Helena K. | last3 = Natelson | first3 = Benjamin H. | date = Jul 2010 | title = Illness trajectories in the chronic fatigue syndrome: a longitudinal study of improvers versus non-improvers|url=https://www.ncbi.nlm.nih.gov/pubmed/20611051|journal=The Journal of Nervous and Mental Disease|volume=198|issue=7 | pages = 486–493|doi=10.1097/NMD.0b013e3181e4ce0b|issn=1539-736X|pmid=20611051}}</ref> |<small>0.5-2.5 years</small> |<small>92 (Fukuda criteria)</small> | colspan="2" |<small> </small> |<small>67%</small> | colspan="2" |<small> </small> |- |<small>Jason et al., 2011.</small><ref name="Jason2011" /> |<small>10 years</small> |<small>24 (Fukuda criteria)</small> | colspan="5" |<small>67% still had CFS, 21% had developed exclusionary illnesses, 8% had Idiopathic chronic fatigue and 4% remitted</small> |- |<small>Nyland et al., 2014.</small><ref name="Nyland2014">{{Cite journal | last = Nyland | first = Morten | last2 = Naess | first2 = Halvor | last3 = Birkeland | first3 = Jon Steinar | last4 = Nyland | first4 = Harald| date = 2014-11-01 | title = Longitudinal follow-up of employment status in patients with chronic fatigue syndrome after mononucleosis|url=https://bmjopen.bmj.com/content/4/11/e005798|journal=BMJ Open|language=en|volume=4|issue=11| pages = e005798|doi=10.1136/bmjopen-2014-005798|issn=2044-6055|pmid=25428629}}</ref> |<small>6.5 years</small> |<small>92 (Fukuda criteria post-EBV)</small> | colspan="2" |<small>13%</small> |<small>57%</small> | colspan="2" |<small>12%</small> |- |<small>Collin & Crawley, 2017.</small><ref name="Collin2017" /> |<small>1/ 2-5 years</small> |<small>418/385 (NICE guideline-criteria)</small> | colspan="2" |<small>3%/6% said they no longer suffered from CFS/ME</small> |<small>28%/30.4%</small> | colspan="2" |<small>8%/17%</small> |} The CDC information webpage has been criticized by patient organizations for painting the prognosis of ME/CFS in a positive light and overemphasizing natural recovery of the disease.<ref name=":0">[http://www.meaction.net/wp-content/uploads/2018/07/CDC-REVISES-ITS-INFORMATION-ON-ME.pdf Seltzer J. (2018, 29 July). CDC revises its information on ME]</ref> [[The MEAction Network|ME Action]], for example, wrote:<blockquote>“While presenting a more positive outlook may decrease physician discomfort in dealing with a chronic and debilitating disease like ME, it is disingenuous to imply that patients will return to good health when so few do. Moreover, this can delay patients from getting the social support they need to cope with a lifelong illness.”<ref>[http://www.meaction.net/wp-content/uploads/2018/10/Recommended-Changes-to-the-CDC-Webpages-on-ME-3.pdf ME Action. September 2018. Recommended Changes to the CDC Webpages on ME.] </ref> </blockquote> === Outbreaks === Longitudinal studies on ME outbreaks show that in its epidemic form, the disease tends to have a better prognosis. This might be because less strict diagnostic criteria were used in these studies or because patients were followed-up much earlier in their disease process (bypassing the normal six month waiting period). Levine et al. provided follow-up data from the outbreaks in the Nevada-California region ([[1984 Incline Village chronic fatigue syndrome outbreak|Incline Village]], [[1984 Truckee outbreak|Truckee]], [[1985 Yerington outbreak|Yerington]] and [[1986 Placerville outbreak|Placerville]]) during the 1980s. Twenty-nine patients were revaluated after a period of three years. Almost all subjects were able to return to pre-illness activity and the authors concluded that the overall prognosis was generally favorable.<blockquote>“Among the patients we observed were a marathon runner, a marathon bicyclist, avid skiers, mountain climbers, and other individuals pursuing an unusually physically active life-style prior to their acute illness. All of these patients attempted to continue their activities and most of them, after periods ranging from 6 to 18 months, eventually were able to resume their previous activities.”<ref>{{Cite journal | last = Levine | first = P. H. | author-link = Paul Levine | last2 = Jacobson | first2 = S. | authorlink2 = | last3 = Pocinki | first3 = A.G. | authorlink3 = Alan Pocinki | last4 = Cheney | first4 = P. | authorlink4 = Paul Cheney | last5 = Peterson | first5 = D. | authorlink5 = Daniel Peterson | last6 = Connelly | first6 = R.R. | last7 = Weil | first7 = R. | last8 = Robinson | first8 = S.M. | last9 = Ablashi | first9 = D.V. | authorlink9 = Dharam Ablashi| date = Aug 1992 | title = Clinical, epidemiologic, and virologic studies in four clusters of the chronic fatigue syndrome|url=https://www.ncbi.nlm.nih.gov/pubmed/1323246|journal=Archives of Internal Medicine|volume=152|issue=8|pages=1611–1616|issn=0003-9926|pmid=1323246|quote=|via=}}</ref></blockquote>Another follow-up study however, concluded that only an estimated 41% of patients during these outbreaks would fulfill the Holmes criteria of ME/CFS. The recovery rate for these ME/CFS patients was only 15%, much lower than the 30% for all patients of the [[1984 Incline Village chronic fatigue syndrome outbreak|Lake Tahoe outbreak]].<ref>{{Cite journal | last = Strickland | first=Paula S. | last2 = Levine | first2 = Paul H. | last3 = Peterson | first3 = Daniel L. | last4 = O'Brien | first4 = Karen | last5 = Fears | first5 = Thomas| date = Jan 2001 | title = Neuromyasthenia and Chronic Fatigue Syndrome (CFS) in Northern Nevada/California | url = |journal=Journal of Chronic Fatigue Syndrome|language=en|volume=9|issue=3-4|pages=3–14|doi=10.1300/j092v09n03_02|issn=1057-3321|pmc=|pmid=|quote= | last6 = | first6 = | authorlink = | authorlink2 = Paul Levine|access-date= | authorlink3 = Daniel Peterson | author-link4 = | authorlink5 = |via=}}</ref> A 10 year follow-up of the outbreak at West Otago, [[New Zealand]] also reported a good prognosis. Though some needed to adapt their lifestyle to prevent relapses, most patients returned to premorbid activity.<ref>{{Cite journal | last = Levine | first = P. H. | last2 = Snow | first2 = P.G. | last3 = Ranum | first3 = B.A. | last4 = Paul | first4 = C. | last5 = Holmes | first5 = M. J. | date = 1997-04-14 | title = Epidemic neuromyasthenia and chronic fatigue syndrome in west Otago, New Zealand. A 10-year follow-up | url =https://www.ncbi.nlm.nih.gov/pubmed/9125006|journal=Archives of Internal Medicine|volume=157|issue=7 | pages = 750–754|issn=0003-9926|pmid=9125006}}</ref> Follow-up data is also available for the outbreak in Akureyri, Iceland. [[Björn Sigurdsson|Sigurdsson]] & Gudmundsson reported in 1955 that 13% of the patients he evaluated considered themselves completely recovered.<ref>{{Cite journal | last = Sigurdsson | first = B. | author-link = Björn Sigurdsson | date = 1956-05-26 | title = Clinical findings six years after outbreak of Akureyri disease|url=https://www.ncbi.nlm.nih.gov/pubmed/13320872|journal=Lancet (London, England)|volume=270|issue=6926 | pages = 766–767|issn=0140-6736|pmid=13320872}}</ref> In 1988, Byron Hyde reported about 10 Icelandic ME patients in the Lancet, 40 years after the initial outbreak. Two of them (20%) indicated a “total physical and intellectual recovery”.<ref>{{Cite journal | last = Hyde | first = B. | last2 = Bergmann | first2 = S. | author-link = Byron Hyde | date = 1988-11-19 | title = Akureyri disease (myalgic encephalomyelitis), forty years later |url =https://www.ncbi.nlm.nih.gov/pubmed/2903396|journal=Lancet (London, England)|volume=2|issue=8621|pages=1191–1192|issn=0140-6736|pmid=2903396|quote=|via=}}</ref> === Pediatric === Prognosis for [[Pediatric myalgic encephalomyelitis and chronic fatigue syndrome|adolescents with ME/CFS]] is generally considered to be more favorable than in adults.<ref>{{Cite web|url=https://www.cdc.gov/me-cfs/healthcare-providers/presentation-clinical-course/prognosis.html | title = Prognosis {{!}} Presentation and Clinical Course {{!}} Healthcare Providers {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | date = 2018-07-10 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2018-10-27}}</ref><ref>{{Cite news | url=https://twitter.com/keithgeraghty/status/1052054136412430336 | title = Dr Keith Geraghty on Twitter|work=Twitter|access-date=2018-10-27|language=en}}</ref><ref>{{Cite journal | last = Rowe | first = Peter C. | last2 = Underhill | first2 = Rosemary A. | last3 = Friedman | first3 = Kenneth J. | last4 = Gurwitt | first4 = Alan | last5 = Medow | first5 = Marvin S. | last6 = Schwartz | first6 = Malcolm S. | last7 = Speight | first7 = Nigel | last8 = Stewart | first8 = Julian M. | last9 = Vallings | first9 = Rosamund | date = 2017 | title=Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer |url =https://www.frontiersin.org/articles/10.3389/fped.2017.00121/full|journal=Frontiers in Pediatrics|language=English|volume=5|doi=10.3389/fped.2017.00121|issn=2296-2360}}</ref> [[Fred Gill|Gill]] et al. reported that 4.5 years after an initial evaluation almost a quarter of adolescent ME/CFS patients reached “near to complete improvement”.<ref>{{Cite journal | last = Gill | first = Anna C. | last2 = Dosen | first2 = Ana | last3 = Ziegler | first3 = John B. | date = Mar 2004 | title = Chronic fatigue syndrome in adolescents: a follow-up study|url=https://www.ncbi.nlm.nih.gov/pubmed/14993080|journal=Archives of Pediatrics & Adolescent Medicine|volume=158|issue=3|pages=225–229|doi=10.1001/archpedi.158.3.225|issn=1072-4710|pmid=14993080}}</ref> The diagnosis in this study however was made retrospectively (by looking at old charts and test results instead of a clinician’s assessment). A Dutch team followed up on 54 adolescents with ME/CFS. After an average of 2.2 years almost half of the sample said they've had almost completely recovered.<ref>{{Cite journal | last = van Geelen | first = Stefan M. | last2 = Bakker | first2 = Rob J. | last3 = Kuis | first3 = Wietse | last4 = van de Putte | first4 = Elise M. | date = Sep 2010 | title = Adolescent chronic fatigue syndrome: a follow-up study|url=https://www.ncbi.nlm.nih.gov/pubmed/20819962|journal=Archives of Pediatrics & Adolescent Medicine|volume=164|issue=9 | pages = 810–814|doi=10.1001/archpediatrics.2010.145|issn=1538-3628|pmid=20819962}}</ref> [[David Bell]] followed up on 35 ME/CFS patients who fell ill during the Lyndonville outbreak in the 1980s. Prognosis was favorable: 37% said they had "recovered completely" and felt "entirely well.” A further 42.9% agreed with the statement “I have never recovered completely but feel pretty well."<ref name=":20">{{Cite journal | last = Bell | first = D. S. | last2 = Jordan | first2 = K. | last3 = Robinson | first3 = M. | date = May 2001 | title = Thirteen-year follow-up of children and adolescents with chronic fatigue syndrome|url=https://www.ncbi.nlm.nih.gov/pubmed/11331676|journal=Pediatrics|volume=107|issue=5 | pages = 994–998|issn=1098-4275|pmid=11331676}}</ref> Other studies (Rangel et al.,<ref>{{Cite journal | last = Rangel | first = L. | last2 = Garralda | first2 = M.E. | last3 = Levin | first3 = M. | last4 = Roberts | first4 = H. | date = Mar 2000 | title = The course of severe chronic fatigue syndrome in childhood | url =https://www.ncbi.nlm.nih.gov/pubmed/10741312|journal=Journal of the Royal Society of Medicine|volume=93|issue=3|pages=129–134|doi=10.1177/014107680009300306|issn=0141-0768|pmc=1297949|pmid=10741312}}</ref> Sulheim et al.,<ref>{{Cite journal | last = Sulheim | first = Dag | last2 = Hurum | first2 = Harald | last3 = Helland | first3 = Ingrid B | last4 = Thaulow | first4 = Erik | last5 = Wyller | first5 = Vegard Bruun | date = 2012-03-21 | title = Adolescent chronic fatigue syndrome; a follow-up study displays concurrent improvement of circulatory abnormalities and clinical symptoms|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3337799/|journal=Biopsychosocial Medicine|volume=6|pages=10|doi=10.1186/1751-0759-6-10|issn=1751-0759|pmc=3337799|pmid=22436201}}</ref>, Rimes et al.<ref>{{Cite journal | last = Rimes | first = Katharine A. | last2 = Goodman | first2 = Robert | last3 = Hotopf | first3 = Matthew | last4 = Wessely | first4 = Simon | last5 = Meltzer | first5 = Howard | last6 = Chalder | first6 = Trudie | date = Mar 2007 | title = Incidence, prognosis, and risk factors for fatigue and chronic fatigue syndrome in adolescents: a prospective community study|url=https://www.ncbi.nlm.nih.gov/pubmed/17332180|journal=Pediatrics|volume=119|issue=3| pages = e603–609|doi=10.1542/peds.2006-2231|issn=1098-4275|pmid=17332180}}</ref>) have reported similar high improvement/recovery rates in pediatric ME/CFS, though these studies did not use generally accepted diagnostic criteria of ME/CFS. In the Bulletin of the [[International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis|IACFS/ME]] [[Katherine Rowe]] claimed to have data for 256 young ME/CFS patients 12 years after initial evaluation. Eighty-eight percent reported recovery, though this information has not been reported in a [[Peer review|peer-review]] publication.<ref name="Rowe2011">{{citation | last =Rowe | first = Katherine | authorlink = Katherine Rowe|url=https://iacfsme.org/portals/0/pdf/Fall2011-AbstractsOttawa-112-200.pdf | title = What is the Natural History of Chronic Fatigue Syndrome in Young People? {{!}}Abstracts from General Session |publisher=IACFS/ME Biennial International Conference |location=Ottawa, Ontario, Canada | date = Sep 23, 2011}}</ref> In its 2015 report (p.183, 213), the [[National Academy of Medicine]] noted a lack of well-designed longitudinal studies on the prognosis of ME/CFS in children and adolescents.<ref name="iom">{{Cite book | url =http://www.ncbi.nlm.nih.gov/books/NBK274235/ | title = Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness | last = Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | last2 = Board on the Health of Select Populations | last3 = Institute of Medicine | date = 2015 | publisher=National Academies Press (US)|isbn=9780309316897|series=The National Academies Collection: Reports funded by National Institutes of Health|location=Washington (DC)|pmid=25695122}}</ref> Dr. Bell notes that if an adolescent spent three months in bed due to ME/CFS they will still be ill at age 35 even if their symptoms were mild in their adult years. Becoming increasingly ill with activity and symptom severity is expected 15-20 years later.<ref name="Bell2016">{{Cite news | url=https://www.omf.ngo/2016/06/25/mecfs-in-children-by-dr-david-s-bell-2/ | title = ME/CFS in Children - by David S. Bell, MD {{!}} Open Medicine Foundation | date = 2016-06-25|work=Open Medicine Foundation|access-date=2018-08-11|language=en-US}}</ref><blockquote>One study of young adults followed for fifteen years demonstrated clear improvement in activity, but not illness resolution<sup>8</sup>. The same group of patients continued to do relatively well for a further five to ten years and then became worse in both activity limitation and symptom severity<sup>12</sup>. It is rare for an adolescent to become completely free of the disease<sup>13</sup>.<ref name="Bell2016" /></blockquote>Children are diagnosed with ME/CFS at three months of illness under the [[Systemic Exertion Intolerance Disease]] (SEID) and [[Canadian Consensus Criteria]] (CCC) and [[myalgic encephalomyelitis]] (ME) is diagnosed immediately under the International Consensus Criteria (ICC).<ref>{{Cite web|url=https://www.masscfids.org/pediatric-me-cfs-links | title = Pediatric ME/CFS links|website=[[Massachusetts ME/CFS & FM Association]]|language=en-GB|access-date=2018-08-11}}</ref><ref name="iom-guide">{{Cite web|url=https://www.nap.edu/resource/19012/MECFScliniciansguide.pdf | title = Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome -- Redefining an illness: Report guide for clinicians | last = Institute of Medicine (US) | last2 = Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | first = | date = 2005 | website = nap.edu | page = 5|archive-url=|archive-date=|access-date=2021-08-25}}</ref><ref name="ccc">{{Cite journal | last = Carruthers | first = Bruce | last2 = Jain | first2 = Anil Kumar | last3 = De Meirleir | first3 = Kenny | last4 = Peterson | first4 = Daniel | last5 = Klimas | first5 = Nancy | last6 = Lerner | first6 = A. Martin | last7 = Bested | first7 = Alison | last8 = Flor-Henry | first8 = Pierre | last9 = Joshi | first9 = Pradip | last10 = Powles | first10 = A.C. Peter | authorlink10 = A C Peter Powles | last11 = Sherkey | first11 = Jeffrey | authorlink11 = Jeffrey Sherkey | last12 = van de Sande | first12 = Marjorie | authorlink12 = Marjorie van de Sande | date = 2003 | title=Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols|url=http://iacfsme.org/Portals/0/pdf/CanadianCaseDefinition.2003.pdf|format = PDF | journal=Journal of Chronic Fatigue Syndrome|volume=11 | pages = 7-36|issue=|quote= | author-link = Bruce Carruthers | authorlink2 = Anil Kumar Jain | author-link3 = Kenny De Meirleir | authorlink4 = Daniel Peterson | authorlink5 = Nancy Klimas|doi=10.1300/J092v11n01_02 | authorlink6 = A Martin Lerner | authorlink7 = Alison Bested | authorlink8 = Pierre Flor-Henry | authorlink9 = Pradip Joshi}}</ref><ref name="icc">{{Cite journal | last = Carruthers | first = Bruce M. | author-link = Bruce Carruthers | last2 = van de Sande | first2 = Marjorie I. | authorlink2 = Marjorie van de Sande | last3 = De Meirleir | first3 = Kenny L. | authorlink3 = Kenny De Meirleir | last4 = Klimas | first4 = Nancy G. | author-link4 = Nancy Klimas | last5 = Broderick | first5 = Gordon | author-link5 = Gordon Broderick | last6 = Mitchell | first6 = Terry | authorlink6 = Terry Mitchell | last7 = Staines | first7 = Donald | author-link7 = Donald Staines | last8 = Powles | first8 = A.C. Peter | author-link8 = A C Peter Powles | last9 = Speight | first9 = Nigel | authorlink9 = Nigel Speight | last10 = Vallings | first10 = Rosamund | authorlink10 = Rosamund Vallings | last11 = Bateman | first11 = Lucinda | authorlink11 = Lucinda Bateman | last12 = Baumgarten-Austrheim | first12 = Barbara | authorlink12 = Barbara Baumgarten-Austrheim | last13 = Bell | first13 = David | author-link13 = David Bell | last14 = Carlo-Stella | first14 = Nicoletta | author-link14 = Nicoletta Carlo-Stella | last15 = Chia | first15 = John | author-link15 = John Chia | last16 = Darragh | first16 = Austin | author-link16=Austin Darragh | last17 = Jo | first17 = Daehyun | author-link17 = Daehyun Jo | last18 = Lewis | first18 = Donald | author-link18 = Donald Lewis | last19 = Light | first19 = Alan | author-link19 = Alan Light | last20 = Marshall-Gradisnik | first20 = Sonya | author-link20 = Sonya Marshall-Gradisnik | last21 = Mena | first21 = Ismael | author-link21 = Ismael Mena | last22 = Mikovits | first22 = Judy | author-link22 = Judy Mikovits | last23 = Miwa | first23 = Kunihisa | author-link23 = Kunihisa Miwa | last24 = Murovska | first24 = Modra | author-link24 = Modra Murovska | last25 = Pall | first25 = Martin | author-link25 = Martin Pall | last26 = Stevens | first26 = Staci | author-link26 = Staci Stevens | date = 2011-08-22 | title=Myalgic encephalomyelitis: International Consensus Criteria|url=https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1365-2796.2011.02428.x|journal=Journal of Internal Medicine|language=en|volume=270|issue=4|pages=327–338|doi=10.1111/j.1365-2796.2011.02428.x|issn=0954-6820|pmc=3427890|pmid=21777306|via=}}</ref> === Treatment studies === == Predictors of outcome == Several studies have looked at factors that influence the prognosis of ME/CFS, though results have generally been conflicting. === Age === Although some studies have found the age of adult ME/CFS patients to be associated with poorer outcomes (with older people having a worse prognosis), most studies did not find this correlation (see table below). {| class="wikitable" | colspan="2" |<small>Does age impact prognosis?</small> |- |<small>Yes</small> |<small>No</small> |- |<small>Jason et al., 2011.<ref name="Jason2011" /></small> |<small>Bombardier et al., 1995.<ref name="Bombardier1995" /></small> |- |<small>Tiersky et al., 2002.<ref name="Tiersky2002" /></small> |<small>Vercoulen et al., 1996.<ref name="Vercoulen1996" /></small> |- | |<small>Pheley et al., 1999.<ref name="Pheley1999" /></small> |- |<small> </small> |<small>Reyes et al., 1999.<ref name="Reyes1999" /></small> |- |<small> </small> |<small>Ciccone et al., 2010.<ref name=":16" /></small> |} Matthews & [[Anthony Komaroff|Komaroff]] were able to follow-up on 92 ME/CFS patients for a long period of nine years. The authors noted that “physical function tended to improve for many patients over time, despite the fact that they were aging.” This suggests age is not a predictor of poor outcomes in adult ME/CFS patients.<ref name="Matthews2007">{{Cite journal | last = Matthews | first = Rosalind M. | last2 = Komaroff | first2 = Anthony L. | date = Jan 2007 | title = Changes in Functional Status in Chronic Fatigue Syndrome Over a Decade|url=https://www.tandfonline.com/doi/abs/10.1300/J092v14n01_04|journal=Journal of Chronic Fatigue Syndrome|language=en|volume=14|issue=1|pages=33–42|doi=10.1300/j092v14n01_04|issn=1057-3321}}</ref> Kidd et al. segmented ME/CFS patients into two groups: those younger and those older than 55. A comparison showed few meaningful differences. But when limited to those patients who had been sick for a long time, younger patients did have more [[Autonomic nervous system|autonomic]] and [[Immune system|immune]]-related symptoms.<ref>{{Cite journal | last = Kidd | first=Elizabeth | last2 = Brown | first2 = Abigail | last3 = McManimen | first3 = Stephanie | last4 = Jason | first4 = Leonard A. | last5 = Newton | first5 = Julia L. | last6 = Strand | first6 = Elin Bolle | date = 2016-04-22 | title = The Relationship between Age and Illness Duration in Chronic Fatigue Syndrome|url=https://www.ncbi.nlm.nih.gov/pubmed/27110826|journal=Diagnostics (Basel, Switzerland)|volume=6|issue=2|doi=10.3390/diagnostics6020016|issn=2075-4418|pmc=4931411|pmid=27110826}}</ref> === Illness duration === Although many physicians believe that patients would benefit from earlier diagnosis and treatment, evidence for this is currently lacking.<ref>[https://kce.fgov.be/sites/default/files/atoms/files/d20081027358.pdf Stordeur S, Thiry N, Eyssen M. Chronisch Vermoeidheidssyndroom: diagnose, behandeling en zorgorganisatie. Health Services Research (HSR). Brussel: Federaal Kenniscentrum voor de Gezondheidszorg (KCE); 2008. KCE reports 88A (D/2008/10.273/58).]</ref> Studies have generally been inconsistent regarding the duration of illness as a predictor of outcome. (see table below). {| class="wikitable" | colspan="2" |<small>Does duration of illness impact prognosis?</small> |- |<small>Yes</small> |<small>No</small> |- |<small>Vercoulen et al., 1996.<ref name="Vercoulen1996" /></small> |<small>Wilson et al., 1994.<ref name="Wilson1994" /></small> |- |<small>Ray et al., 1997.<ref name="Ray1997" /></small> |<small>Bombardier et al., 1995.<ref name="Bombardier1995" /></small> |- |<small>Reyes et al., 1999.<ref name="Reyes1999" /></small> |<small>Pheley et al., 1999.<ref name="Pheley1999" /></small> |- |<small>Nisenbaum et al., 2003.<ref name="Nisenbaum2003" /></small> |<small>Hill et al., 1999.<ref name="Hill1999" /></small> |- |<small>Nyland et al., 2014.<ref name="Nyland2014" /></small> |<small>Anderson et al., 2004.<ref name="Andersen2004" /></small> |} The CDC information website has been criticized for suggesting early intervention leads to better outcomes. In a detailed critique [[Jaime Seltzer]] from #[[The MEAction Network|MEAction]] wrote: <blockquote>"Anyone who has gone undiagnosed for years or even decades understands that an accurate diagnosis and useful management strategies — such as avoiding overactivity and providing symptomatic relief — can improve quality of life. But there is no evidence that early intervention affects the likelihood of full recovery. When the CDC has been so cautious regarding what it recommends as treatment, this assertion, which is insupportable with current evidence, stands out."<ref name=":0" /></blockquote>[[Fred Friedberg|Friedberg]] et al. compared ME/CFS patients with a median length of illness of 18 years compared to a group of ME/CFS-patients who had been ill for less than three years. Few differences existed between the two groups; although those with long illness duration had more [[Cognitive dysfunction|cognitive difficulties]] (they also reported more sexual problems).<ref name="Friedberg2000">{{Cite journal | last = Friedberg | first = F. | last2 = Dechene | first2 = L. | last3 = McKenzie | first3 = M. J. | last4 = Fontanetta | first4 = R. | date = Jan 2000 | title = Symptom patterns in long-duration chronic fatigue syndrome|url=https://www.ncbi.nlm.nih.gov/pubmed/10750631|journal=Journal of Psychosomatic Research|volume=48|issue=1 | pages = 59–68|issn=0022-3999|pmid=10750631}}</ref> In a study by [Santamarina-Perez et al. (2011), no association was found between illness duration and neuropsychological test results.<ref>{{Cite journal | last = Santamarina-Perez | first = Pilar | last2 = Eiroa-Orosa | first2 = Francisco Jose | last3 = Freniche | first3 = Verónica | last4 = Moreno-Mayos | first4 = Aurea | last5 = Alegre | first5 = José | last6 = Saez | first6 = Naia | last7 = Jacas | first7 = Carlos| date = Jul 2011 | title = Length of illness does not predict cognitive dysfunction in chronic fatigue syndrome|url=https://www.ncbi.nlm.nih.gov/pubmed/21846221|journal=Applied Neuropsychology|volume=18|issue=3|pages=216–222|doi=10.1080/09084282.2011.595448|issn=1532-4826|pmid=21846221}}</ref> [[Mady Hornig|Hornig]] et al. did find a distinct an increase in [[cytokine]] expression in the plasma of ME/CFS patients with illness duration less than three years, an increase that was not present in patients with longer illness duration.<ref>{{Cite journal | last = Hornig | first = Mady | last2 = Montoya | first2 = José G. | last3 = Klimas | first3 = Nancy G. | last4 = Levine | first4 = Susan | last5 = Felsenstein | first5 = Donna | last6 = Bateman | first6 = Lucinda | last7 = Peterson | first7 = Daniel L. | last8 = Gottschalk | first8 = C. Gunnar | last9 = Schultz | first9 = Andrew F. | date = 2015-02-01 | title = Distinct plasma immune signatures in ME/CFS are present early in the course of illness|url=http://advances.sciencemag.org/content/1/1/e1400121|journal=Science Advances|language=en|volume=1|issue=1| pages = e1400121|doi=10.1126/sciadv.1400121|issn=2375-2548}}</ref> === Illness severity === Many studies have found that illness severity at baseline is associated poorer outcomes over time. Disagreement exists however on which measures of illness best predict a worse prognosis. While Pheley et al. (1999)<ref name="Pheley1999" /> found an association with [[fatigue]], Ray et al. (1997)<ref name="Ray1997" /> reported the broader concept of somatic symptoms to be associated with poor outcomes. In a [[Norway|Norwegian]] study that followed ME/CFS patients who got sick after [[mononucleosis]], [[arthralgia|joint pain]] was an important predictor of prognosis.<ref name="Nyland2014" /> {| class="wikitable" | colspan="2" |<small>Does illness severity impact prognosis?</small> |- |<small>Yes</small> |<small>No</small> |- |<small>Ray et al., 1997.<ref name="Ray1997" /> (somatic symptoms)</small> |<small>Anderson et al., 2004.<ref name="Andersen2004" /></small> |- |<small>Pheley et al., 1999.<ref name="Pheley1999" /> (fatigue)</small> | |- |<small>Van der Werf et al., 2002.<ref name=":19" /></small> | |- |<small>Jason et al., 2011.<ref name="Jason2011" /></small> | |- |<small>Nyland et al., 2014.<ref name="Nyland2014" /> (arthralgia)</small> | |- |<small>Ciccone et al., 2010.<ref name=":16" /></small> | |} === Psychiatric comorbidity === Though some studies have reported it, no convincing evidence exists that a comorbid psychiatric diagnosis worsens the prognosis of ME/CFS. One well-controlled study ([[Lana Tiersky|Tiersky]] et al. 2002) even found an inverse relationship; patients with a concurrent psychiatric history showed more improvement over time.<ref name="Tiersky2002" /> The authors attributed this to varied presentations of symptoms in patients meeting the [[Fukuda criteria]], which allows some patients with an underlying psychiatric etiology to be diagnosed with ME/CFS. {| class="wikitable" | colspan="2" |<small>Does a psychiatric diagnosis impact prognosis?</small> |- |<small>Yes</small> |<small>No</small> |- |<small>Bombardier et al.,1995.<ref name="Bombardier1995" /> (Dysthymia)</small> |<small>Vercoulen et al., 1996.<ref name="Vercoulen1996" /></small> |- |<small>Pheley et al., 1999.<ref name="Pheley1999" /></small> |<small>Ray et al., 1997.<ref name="Ray1997" /></small> |- |<small>Nyland et al., 2014. (Depression)<ref name="Nyland2014" /></small> |<small>Hill et al. (1999)<ref name="Hill1999" /></small> |- |<small> </small> |<small>Tiersky et al., 2002.<ref name="Tiersky2002" /> (inverse relationship)</small> |} === Infectious onset === A [[Japan|Japanese]] study indicated that the prognosis of [[postinfectious]] ME/CFS patients is better than in ME/CFS patients without an [[Infection|infectious onset]].<ref>{{Cite journal | last = Masuda | first=Akinori | last2 = Nakayama | first2 = Takashi | last3 = Yamanaka | first3 = Takao | last4 = Koga | first4 = Yasuyuki | last5 = Tei | first5 = Chuwa | date = Oct 2002 | title = The prognosis after multidisciplinary treatment for patients with postinfectious chronic fatigue syndrome and noninfectious chronic fatigue syndrome|url=https://www.ncbi.nlm.nih.gov/pubmed/12442563|journal=Journal of Behavioral Medicine|volume=25|issue=5 | pages = 487–497|issn=0160-7715|pmid=12442563}}</ref> Though the sample size was small, results were in line with other studies. A Norwegian team for example followed up on ME/CFS patients who had developed ME/CFS after infectious mononucleosis. After 6.5 years a large increase in employment status was seen.<ref name="Nyland2014" /> ===Sudden/gradual onset === DeLuca et al. (1997) compared patients with a sudden and gradual onset and found relatively few differences, except that the gradual onset group had more psychiatric comorbidity.<ref name="DeLuca1997">{{Cite journal | last = DeLuca | first=J. | last2 = Johnson | first2 = S.K. | last3 = Ellis | first3 = S.P. | last4 = Natelson | first4 = B.H. | date = Jan 1997 | title = Sudden vs gradual onset of chronic fatigue syndrome differentiates individuals on cognitive and psychiatric measures|url=https://www.ncbi.nlm.nih.gov/pubmed/9201650|journal=Journal of Psychiatric Research|volume=31|issue=1 | pages = 83–90|issn=0022-3956|pmid=9201650}}</ref> Two studies ([[Michele Reyes|Reyes]] et al. 1999<ref name="Reyes1999" />; Hill et al. 1999<ref name="Hill1999" />) found that the type of illness onset was not a significant predictor of prognosis in ME/CFS. === Comorbid fibromyalgia === Ciccone et al. reported that ME/CFS patients with comorbid [[fibromyalgia]] have a worse prognosis than ME/CFS patients without fibromyalgia.<ref name=":16" /> Other studies had already shown that patients with both diseases are more physically impaired than patients who only have ME/CFS.<ref name="Meenus2016">{{Cite journal | last = Meeus | first = Mira | last2 = Ickmans | first2 = Kelly | last3 = Struyf | first3 = Filip | last4 = Kos | first4 = Daphne | last5 = Lambrecht | first5 = Luc | last6 = Willekens | first6 = Barbara | last7 = Cras | first7 = Patrick | last8 = Nijs | first8 = Jo| date = Jan 2016 | title = What is in a name? Comparing diagnostic criteria for chronic fatigue syndrome with or without fibromyalgia|url=https://www.ncbi.nlm.nih.gov/pubmed/25308475|journal=Clinical Rheumatology|volume=35|issue=1|pages=191–203|doi=10.1007/s10067-014-2793-x|issn=1434-9949|pmid=25308475}}</ref><ref name="Ickmans2014">{{Cite journal | last = Ickmans | first = Kelly | last2 = Meeus | first2 = Mira | last3 = De Kooning | first3 = Margot | last4 = Lambrecht | first4 = Luc | last5 = Nijs | first5 = Jo| date = Feb 2014 | title = Recovery of upper limb muscle function in chronic fatigue syndrome with and without fibromyalgia|url=https://www.ncbi.nlm.nih.gov/pubmed/24313704|journal=European Journal of Clinical Investigation|volume=44|issue=2|pages=153–159|doi=10.1111/eci.12201|issn=1365-2362|pmid=24313704}}</ref> === Being diagnosed with CFS === In the community-study in Wichita, Kansas, researchers<ref name="Nisenbaum2003" /> were able to compare the prognosis of ME/CFS patients who were diagnosed versus those than weren't. [[Gijs Bleijenberg]] summarized the results as follows: <blockquote>"Remission was also not associated with the report of being ever diagnosed as CFS. Although the number of CFS diagnosed subjects was very low, it may mean that the diagnosis of CFS cannot be seen as unfavourable for remission. This is contrary the idea of some family doctors who are reluctant to diagnose their patients as having CFS, as they are afraid that this will facilitate an unfavourable course of the condition."<ref name="Bleijenberg2003">{{Cite journal | last = Bleijenberg | first = Gijs| date = 2003-10-06 | title = Chronic fatigue and chronic fatigue syndrome in the general population|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC269992/|journal=Health and Quality of Life Outcomes|volume=1 | pages = 52|doi=10.1186/1477-7525-1-52|issn=1477-7525|pmid=14613570}}</ref></blockquote>Bell et al. (2001) were able to dispel another myth, namely the idea that ME/CFS symptoms persist because of encouragement by sympathetic physicians who might reinforce illness beliefs. In their 13-year follow-up study, the longest to date in ME/CFS, clinical empathy was not a prognostic factor.<ref name=":20" /> ===ME worse prognosis than CFS? === Hamilton et al. (2005) were able to probe the data of 18,000 patients who had been diagnosed by primary care physicians with either CFS, ME, fibromyalgia or [[postviral fatigue syndrome]] (PVFS). To estimate prognosis they looked at the percentage of patients who retained the label of any of these "[[Chronic fatigue|fatiguing illnesses]]" at follow-up. Patients with ME were found to have a worse prognosis than patients with CFS, fibromyalgia or PVFS.<ref>{{Cite journal | last = Hamilton | first = William T. | last2 = Gallagher | first2 = Arlene M. | last3 = Thomas | first3 = Janice M. | last4 = White | first4 = Peter D. | date = Aug 2005 | title = The prognosis of different fatigue diagnostic labels: a longitudinal survey|url=https://www.ncbi.nlm.nih.gov/pubmed/15805126|journal=Family Practice|volume=22|issue=4|pages=383–388|doi=10.1093/fampra/cmi021|issn=0263-2136|pmid=15805126}}</ref> === Sex === Most studies have not found gender to be a significant predictor of prognosis (more references needed).<ref>{{Cite journal | last = Reyes | first = Michele | last2 = Dobbins | first2 = James G. | last3 = Nisenbaum | first3 = Rosane | last4 = Subedar | first4 = Nazerah S. | last5 = Randall | first5 = Bonnie | last6 = Reeves | first6 = William C. | date = Jan 1999 | title = Chronic Fatigue Syndrome Progression and Self-Defined Recovery|url=https://www.tandfonline.com/doi/abs/10.1300/J092v05n01_03|journal=Journal of Chronic Fatigue Syndrome|language=en|volume=5|issue=1|pages=17–27|doi=10.1300/j092v05n01_03|issn=1057-3321}}</ref>{{Citation needed|reason=| date = Jul 27, 2020}} Matthews & Komaroff (2007) did find women to have consistent higher physical function than men.<ref name="Matthews2007" /> ==‘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> ==The course of ME/CFS == === Disease onset=== The disease [[ME/CFS]] often occurs when a person does not recover from a flu-like illness, [[Epstein-Barr virus|EBV]], [[mononucleosis]], [[HHV]], [[Q fever]], another [[virus]] or other [[infection]]s. Patients must meet one or more [[Definitions of myalgic encephalomyelitis and chronic fatigue syndrome|diagnostic criteria]] that define either [[myalgic encephalomyelitis]] (ME), [[chronic fatigue syndrome]] (CFS) or ME/CFS.<ref>{{Cite book | date = 2015-03-16 | title = Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|url=https://www.nap.edu/read/19012/chapter/7#157|language=en|doi=10.17226/19012}}</ref><ref>{{Cite news | url=http://www.cortjohnson.org/blog/2014/01/09/lipkin-study-vagus-nerve-hhv-6-loomis-hhv-6-foundation/ | title = The Lipkin Study, The Vagus Nerve Infection Hypothesis and HHV-6: Kristin Loomis of the HHV-6 Foundation Talks - Pt. I - Health Rising | last = Johnson | first =Cort | date = 2014-01-09|work=Health Rising|access-date=2018-10-17|archive-url=|archive-date=|language=en-US}}</ref> "Occasionally, ME/CFS has been triggered by [[Environmental toxin|environmental toxins]], the receipt of an [[Vaccine|immunizing injection]], or surviving a major physical [[trauma]]."<ref>{{Cite web|url=https://www.massmecfs.org/cfids-me-cfs?showall=&start=3 | title = About ME/CFS | last = | first = | date = Jan 6, 2016 | website = massmecfs.org | page = 4|language=en-GB|archive-url=|archive-date=|access-date=2018-10-17}}</ref> === Fluctuation === For most ME/CFS patients, their health is never the same and they experience numerous symptoms and disease severity which fluctuate day to day and through the years.<ref>{{Cite web|url=http://www.meassociation.org.uk/about/the-symptoms-and-diagnosis-of-mecfs/ | title = Symptoms, Testing and Assessment.|website=[[The ME Association]]|language=en-US|access-date=2018-10-17}}</ref><ref>{{Cite news | url=http://www.webmd.com/chronic-fatigue-syndrome/chronic-fatigue-syndrome-symptoms | title = Think You Might Have Chronic Fatigue Syndrome? Here are The Symptoms|work=WebMD|access-date=2018-10-17|language=en-US}}</ref><ref>{{Cite news | url=http://phoenixrising.me/mecfs-basics/chronic-fatigue-syndrome-mecfs-facts-chronic-fatigue-syndrome-is-2 | title = About ME/CFS | last = | first = | date = Mar 6, 2011|work=Phoenix Rising|access-date=2018-10-17|archive-url=|archive-date=|language=en-US}}</ref> In multiple sclerosis, the clinical course of the disease can be divided into different subtypes as some patients experience a progressive decline, while others a more relapsing course with ups and downs.<ref>{{Cite web|url=https://www.multiplesclerosis.com/us/treatment.php | title = Types of MS and MS Treatment Options—multiplesclerosis.com|website=multiplesclerosis.com|access-date=2018-10-28}}</ref> [[Jamie Stroothoff|Stroothoff]] et al. tried to make a similar subdivision in ME/CFS. Their analysis showed that the majority of ME/CFS patients describe their illness as fluctuating, with a minority (15.9%) said they were constantly getting worse.<ref>{{Cite journal | last = Stoothoff | first = Jamie | last2 = Gleason | first2 = Kristen | last3 = McManimen | first3 = Stephanie | last4 = Thorpe | first4 = Taylor | last5 = Jason | first5 = Leonard A. | date = 2017 | title=Subtyping Patients with Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) By Course of Illness|url=https://www.ncbi.nlm.nih.gov/pubmed/29204592|journal=Journal of Biosensors, Biomarkers and Diagnostics|volume=2|issue=1|doi=10.15226/2575-6303/2/1/00113|pmc=5710812|pmid=29204592|pages=|quote= | author-link = Jamie Stoothoff | authorlink2 = Kristen Gleason | author-link3 = Stephanie McManimen | author-link4 = Taylor Thorpe | authorlink5 = Leonard Jason|via=}}</ref> [[Sandra Howes|Howes]] & [[Ellen Goudsmit|Goudsmit]] had previously reported on a subtype of ME that progressively worsens over time.<ref>Howes S and Goudsmit EM. [https://scholar.google.com/scholar_url?url=https://www.researchgate.net/profile/Ellen_Goudsmit/publication/309188001_Progressive_Myalgic_Encephalomyelitis_ME_or_a_New_Disease_A_Case_Report/links/5803c00008ae6c2449f9610e/Progressive-Myalgic-Encephalomyelit Progressive Myalgic Encephalomyelitis (ME) or A New Disease? A Case Report.] Phys Med Rehabil Int. 2015;2(6): 1052.</ref> === Fennell's 4 stages === Others have subdivided the course of ME/CFS into different stages. For example, in the 1990s, [[Patricia Fennell]] suggested four distinct stages.<ref>{{Cite journal | last = Fennell | first = Patricia A. | date = Jan 1995 | title = The Four Progressive Stages of the CFS Experience|url=https://www.tandfonline.com/doi/abs/10.1300/J092v01n03_11|journal=Journal of Chronic Fatigue Syndrome|language=en|volume=1|issue=3-4 | pages = 69–79|doi=10.1300/j092v01n03_11|issn=1057-3321}}</ref> :The first phase is about the process of getting sick, giving up hobbies or work, and looking for an explanation of symptoms. :In the second phase, the diagnosis has provided a kind of relief, while the disease usually stabilizes. :In the third phase, patients understand that they will not recover quickly and that their disease is chronic. At this stage patients go through a mourning process as they realize that their old self is gone and they have to adapt to a new identity. Although the illness is stable, they still experience relapses. :In the fourth phase, the patients reintegrate with their new identity; they set new goals and value a new way of living. Some experience improvement. [[Leonard Jason|Jason]] et al. tested this model in 65 ME/CFS patients. Though analysis showed a three-factor solution that corresponded with Fennell's stages, almost none of the patients were in the fourth stage.<ref>{{Cite journal | last= Jason | first = L. A. | last2 = Fricano | first2 = G. | last3 = Taylor | first3 = R.R. | last4 = Halpert | first4 = J. | last5 = Fennell | first5 = P.A. | last6 = Klein | first6 = S. | last7 = Levine | first7 = S. | date = Dec 2000 | title = Chronic fatigue syndrome: an examination of the phases|url=https://www.ncbi.nlm.nih.gov/pubmed/11132566|journal=Journal of Clinical Psychology|volume=56|issue=12|pages=1497–1508|doi=10.1002/1097-4679(200012)56:123.0.CO;2-Z|issn=0021-9762|pmid=11132566}}</ref> This was probably because participants were selected in a clinic and were still actively seeking health care. The analysis also showed that patients experiencing the first phase, the crisis phase, were sick for a longer time than patients in other stages. This suggests Fennell's subdivisions should not be seen as a linear development in time, but rather the progression patients make in dealing with illness and disability. === Bell’s 3 stages === Based on the experience of adolescents he followed up for many years, [[David Bell]] subdivides the course of ME/CFS into three stages.<ref name=":22" /> At the first stage, there is an acute illness where [[Epstein-Barr virus|EBV]] is likely responsible for most adolescents but there is no standard viral illness. The initial virus likely fades away in a week and the patient feels better and is ready for regular activities. Bell adds "in a person with a gradual onset of symptoms, this stage would be different." The second stage "occurs when the symptoms do not disappear, but persist for months to years in roughly the same severity. There is little variation day-to-day, and this time is very confusing. Many medical providers are contacted, most giving conflicting opinions varying from psychological disorders to possible exotic infections, but the tests come back normal." In the third stage, patients will have mild, gradual improvements over years and patients adjust their lives to the symptoms. Patients may look well and recovery is thought to have taken place, but they still have to adapt their lifestyle to avoid relapses and symptom exacerbation. == See also == * [[Epidemiology of myalgic encephalomyelitis and chronic fatigue syndrome|Epidemiology]] * [[Onset of ME/CFS|Onset]] * [[Pediatric]] *[[Prevalence of myalgic encephalomyelitis and chronic fatigue syndrome|Prevalence]] == Learn more == * [https://www.massmecfs.org/more-resources-for-me-cfs/309-lecture-by-dr-david-bell-april-16-2011 Lecture by Dr. David Bell, April 16, 2011]<ref>{{Cite web|url=https://www.massmecfs.org/more-resources-for-me-cfs/309-lecture-by-dr-david-bell-april-16-2011 | title = Lecture by Dr. David Bell, April 16, 2011 | last = Proskauer | first = Charmian|website=massmecfs.org|language=en-GB|access-date=2018-10-17}}</ref> * [https://www.omf.ngo/2016/08/01/prognosis-of-mecfs/ Prognosis of ME/CFS – by David S. Bell, MD] == References == {{Reflist}} [[Category:Core topics]]
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