A follow-up of chronic fatigue syndrome patients who took part in a trial where they showed improvements after 1 year of cognitive behavioral therapy and graded exercise therapy finds that the improvements were sustained for 2.5 years after starting treatment.

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Graded exercise therapy is where patients gradually exercise more in a monitored program tailored to their individual symptoms.

The research team, including members from Queen Mary University of London (QMUL), UK, reports the findings in The Lancet Psychiatry. Coauthor Peter White, a professor in the Wolfson Institute of Preventive Medicine at QMUL, says:

“The fact that these two treatments have long-lasting benefits is very encouraging.”

Chronic fatigue syndrome (CFS) is a debilitating and complex disorder where the person experiences profound fatigue that is not improved by bed rest and that may be worsened by physical or mental activity. Symptoms may include weakness, muscle pain, insomnia and problems with memory and/or concentration – all of which can impair quality of life. In some cases, CFS can persist for years.

For the study, CFS was defined as having had fatigue and impaired functioning for at least 6 months and for which there was no identifiable alternative diagnosis. The authors note that while myalgic encephalomyelitis (ME) is often cited as the same disease, there are those who consider it a separate illness.

The new study is a follow-up to the PACE trial, the results of which were published in 2011.

In the original PACE trial, 641 patients with CFS were randomly assigned to four treatment groups: specialist medical care (SMC) alone, SMC plus cognitive behavioral therapy (CBT), SMC plus graded exercise therapy (GET) or SMC plus adaptive pacing therapy (APT). Three quarters of the trial participants took part in the follow-up.

SMC is where the patient receives advice on how to manage the disease and any accompanying medication; CBT is a “talking therapy” that helps patients understand how thinking can affect their symptoms and encourages them to experiment with increasing levels of activity; GET is where patients gradually exercise more in a monitored program tailored to their individual symptoms and fitness; and APT helps patients adapt their lives to live better within the limits of their condition.

The earlier 2011 study found that outcomes for CBT and GET were better than either SMC alone or APT, and this was still the case after 1 year of follow-up.

In the new study, the team found that the improvements achieved after 1 year of CBT and GET were still there 2.5 years after treatment.

They also found that patients who received CBT and GET in the original trial were less likely to seek additional treatment after the trial than patients who originally had SMC alone or APT.

The results showed no significant differences among the four treatment groups in the number of patients reporting long-term worsening of their general health (about 1 in 10 patients in each group). Prof. White notes:

Finding no significant differences in the proportions getting worse over time is a reassurance for those who worry that some of these treatments might make things worse. But it is also a reminder that these treatments do not help everybody, and more research is needed into finding other treatments that help.”

Earlier this year, Medical News Today reported how a committee of experts has called for chronic fatigue syndrome to be renamed and redefined. The committee, convened by the Institute of Medicine in the US, released a report proposing new diagnostic criteria for the disease. The report also estimates there are between 836,000 and 2.5 million Americans living with CFS/ME, 84-91% of whom are undiagnosed.