Anonymous
Not logged in
Talk
Contributions
Create account
Log in
Search
Editing
Prognosis for myalgic encephalomyelitis and chronic fatigue syndrome
(section)
From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history
Namespaces
Page
Discussion
More
More
Page actions
Read
Edit
Edit source
History
Warning:
You are not logged in. Your IP address will be publicly visible if you make any edits. If you
log in
or
create an account
, your edits will be attributed to your username, along with other benefits.
Anti-spam check. Do
not
fill this in!
== 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 ===
Summary:
Please make sure your edits are consistent with
MEpedia's guidelines
.
By saving changes, you agree to the
Terms of use
, and you irrevocably agree to release your contribution under the
CC BY-SA 3.0 License
and the
GFDL
. You agree that a hyperlink or URL is sufficient attribution under the Creative Commons license.
Cancel
Editing help
(opens in new window)
This page is a member of 5 hidden categories:
Category:All articles needing cleanup from 2021
Category:All articles with unsourced statements
Category:Articles needing cleanup from 2021
Category:Articles with unsourced statements from 2020
Category:Cleanup tagged articles with a reason field from 2021
Navigation
Navigation
Skip to content
Main page
Browse
Become an editor
Random page
Popular pages
Abbreviations
Glossary
About MEpedia
Links for editors
Contents
Guidelines
Recent changes
Pages in need
Search
Help
Wiki tools
Wiki tools
Special pages
Page tools
Page tools
User page tools
More
What links here
Related changes
Page information
Page logs