Prognosis for myalgic encephalomyelitis and chronic fatigue syndrome

Prognosis of ME/CFS is considered poor and few will return to pre-illness health and functioning.

Disease onset and lifelong illness
The disease ME/CFS is diagnosed when a person does not recover from a flu-like illness, EBV, mononucleosis, HHV, Q fever, virus or other infections and meets one or more diagnostic criteria for either myalgic encephalomyelitis (ME), chronic fatigue syndrome (CFS) or ME/CFS. "Occasionally, ME/CFS has been triggered by environmental toxins, the receipt of an immunizing injection, or surviving a major trauma." Patient health is never the same and they experience numerous symptoms and disease severity which fluctuate day to day, week to week, month to month, year to year and decade to decade as well as varying symptoms and disease severity among patients.

Three stages
Dr. David Bell, who serves on the Scientific Advisory Board for the Open Medicine Foundation, discusses three stages of the disease in the article Prognosis of ME/CFS.


 * At the first stage, there is an acute illness where 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. He adds "in a person with a gradual onset of symptoms, this stage would be different."
 * 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. Some patients will make a full recovery in 3-4 years but "recovery and improvement are completely different."

Poor long-term prognosis
Dr. Bell has great concern for patients 35 years old who had become ill as teens and has been studying a group that first became ill in 1985. "Some of the young adults rated their health as “good,” while the amount of activity they could perform was minimal. They had become so used to their performance level, they accepted it as their new normal. Unfortunately, many of them, while they described their health as good, they were unable to work full time or carry on other duties." It is now understood that persons with ME/CFS do not have a good long-term prognosis and it is actually poor as "full recovery from untreated CFS is rare."

Few Return to Pre-illness State of Functioning
In about 40% of people with ME/CFS, the condition will improve over time, though recovery rates from the condition are generally quite low (less than 10%). The condition may also take a relapsing/remitting course, so individuals who appear to have recovered, may actually be in remission. For 5-20% of people, the condition is degenerative. Some studies suggest that prognosis is better for those with less severe symptoms, and who developed the condition at a younger age (childhood-young adulthood), though these findings are not consistent. It is clear that few people will return to their pre-illness state of health and functioning.

Dr. Bell's finding with 13-year and 25-year surveys proved similar in that patients experienced a return of symptoms or an erosion in activity level. Many of the long-term patients not only didn't improve, they worsened.

Cort Johnson, noting Bell et al 13-year study, wrote about ME/CFS relapse:"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."

Severely ill
It is estimated that 25% of ME/CFS patients are severely ill and are housebound or bedbound.

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 * Lecture by Dr. David Bell, April 16, 2011