Talk:Prognosis for myalgic encephalomyelitis and chronic fatigue syndrome

Updates

CDC prognosis section unchanged from 2018 but most of CDC pages have been updated since then.

sources

These may or may not be in the content already

• 2020, Obtaining an Ill-Health Pension, Prognosis & Permanency

• 2019, Myalgic encephalomyelitis/chronic fatigue syndrome: a comprehensive review

• 2020, How Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) progresses: the natural history of ME/CFS

• 2021, Health, Wellbeing, and Prognosis of Australian Adolescents (Full text)

By illness and patient group

• 1996, The prognosis of chronic fatigue and chronic fatigue syndrome: A systematic review

Very long term follow up

• 2012, Understanding Long-Term Outcomes of Chronic Fatigue Syndrome [PMC MC3940158 (Full text)]

25 yr follow up

• 2001, Thirteen-year follow-up of children and adolescents with chronic fatigue syndrome (Full text)

Average age 23, follow up on average 8 years, mean disease duration 11.4 years at contact 2

• 2014, Longitudinal follow-up of employment status in patients with chronic fatigue syndrome after mononucleosis (Full text)

• 2000, The course of severe chronic fatigue syndrome in childhood (Full text)

Approx 2 year follow up

At contact 1, 9 (10%) were part-time or full- time employed. At contact 2, 49 (55%) were part-time or full-time employed. Logical regression analysis showed that FSS≥5 at contact 2 was associated with depression, arthralgia and long disease duration (all at contact 1). Conclusions: About half of younger patients with CFS with long-term incapacity for work experienced marked improvement including full-time or part-time employment showing better outcomes than expected. Risk factors for transition to permanent disability were depression, arthralgia and disease duration.

• 2017, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer (Full text)

It is generally accepted that young people with ME/CFS have a more favorable prognosis than adults. There have been few studies with sufficient numbers and duration of follow-up to be confident of the findings, but factors such as severity of symptoms or age at onset have not been shown to be reliable predictors of long-term outcomes. In a follow-up study of nearly 700 young people the average duration of illness of those who report having “recovered” was 4–5 years with a range from 1 to 15 years. By 5 years, 60% reported recovery, and by 12 years, 88% reported recovery. Of those who reported recovery, about one-third admitted to modifying their activities to remain feeling well (19). Several other studies found that although many patients improved, 20–48% showed no improvement or actually had worse fatigue and physical impairment at follow-up times ranging from 2 to 13 years (20–22). Even among those who report having completely recovered, many describe persistent symptoms that are not reported by healthy individuals (20).

Feedback from young people indicated that an important determinant of their functioning as adults was the effort made to enable them to remain engaged in education. This might have followed relatively unconventional pathways but it enabled them to remain socially connected and to feel they were able to achieve their aspirations fully or in part. From this group, more than 95% were either studying or working part or fulltime (23).

~Njt (talk) 23:48, August 25, 2021 (UTC)