Doctors report that most people with ME/CFS feel worse at first, improve and then plateau and remain at limited functionality. A significant subset of patients, however, regress or remain severely ill. Recovery can occur but is rare.
The Early Edge
The first couple of years appear to be important. Adolescents and patients who get treatment early appear to have higher success rates than adults or people with longer duration ME/CFS (> 2 years).
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Tips for Newbies with Fibromyalgia and/or Chronic Fatigue Syndrome (ME/CFS)
Both the Dubbo and the Taylor studies suggest many people with infectious onset who are diagnosed with ME/CFS either get well or (more likely) improve enough so that they no longer meet the criteria in the first two years.
A thirteen year followup of adolescent ME/CFS patients indicated that 37% considered themselves completely well, 43% considered themselves well but still with ME/CFS and about 20% considered themselves still ill. A three year followup of young patients however, indicated over half were having difficulty participating in school.
The Adult Disadvantage
A systematic review (of CBT-type studies) indicated median recovery rates were around 5% with symptom improvement rates at about 40%. A 1995 review of an older chronic fatigue/chronic fatigue syndrome population found low recovery rates (2%) with 64% of patients reporting improvement in symptoms. A ten-year followup of adults found 2/3rds continued to have ME/CFS, 20% developed exclusionary illnesses and 1 (4%) recovered
Not surprisingly, severely ill patients appear to have poorer recovery rates. Hill’s 1999 two-year study of severely ill patients found that most were still severely ill, almost all still met the criteria for ME/CFS and only 1 (4%) recovered.
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A randomly derived population study examining a less-sick ME/CFS group found large fluctuations in wellness with 60% no longer meeting the CDC criteria for CFS after 3 years. Ten percent reported complete remission with duration of illness (<2 years) the most important factor in who got completely well.
Experienced ME/CFS Doctors Report Higher Rates of Improvement
While recovery is rare, experienced ME/CFS physicians do report that improvements are common. Dr. Lapp, Dr. Teitelbaum, Dr. Holtorf and Dr. De Meirlier assert that 80% or more of their patients see ‘significant’ improvement. Dr. Lapp reports that even ‘simple supportive care’ can yield real benefits.
A Severely Ill Subset
Unfortunately, treatments appear to almost completely fail in a significant subset of patients After speaking with several prominent ME/CFS physicians Marcia Harmon of the CFIDS Association reported that :
“It would be wrong to conclude that if patients just work hard enough to find the right combination of all the treatment strategies…. then they’ll get better, or at least substantially improve. The bitter, unpalatable reality is that CFS patients can be proactive, they can have a good attitude, they can try various drug and nondrug interventions, and they can still remain ill, even profoundly disabled.”
ME/CFS physicians (Dr. Teitelbaum, Dr. De Meirleir) report that a subset of ME/CFS patients (@10-20%) fail to significant;ly improve no matter what treatments they receive. A 2013 study suggested a significant percentage of patients do not benefit either from coping or pacing.
While many ME/CFS patients appear to improve over time the danger of relapse is real even in those whose health has improved. One group of patients appears to experience huge swings of health. Some are well, sometimes for years, only to relapse later.
While complete recovery can occur it appears to be rare. The wide variety of treatments that have produced recovery suggest that ME/CFS is a heterogeneous illness. Check out Health Rising’s database of recovery stories here.