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Prognosis for myalgic encephalomyelitis and chronic fatigue syndrome
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===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>
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