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Prognosis for myalgic encephalomyelitis and chronic fatigue syndrome
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==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.
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