Are Chronic Fatigue Sufferers Afraid of Exercise?

By Pat Anson, Editor

Research published in a respected British medical journal is fueling a new debate over exercise and whether it helps or hurts people suffering from chronic fatigue syndrome.

Researchers at King’s College London reported in The Lancet Psychiatry that most chronic fatigue sufferers have “fear avoidance beliefs” that exercise will only make things worse.

Chronic Fatigue Syndrome (CFS) -- also known as Myalgic Encephalomyelitis (ME) –  is characterized by severe tiredness, disturbed sleep and a weakened immune system, along with muscle and joint pain. CFS is a comorbid condition often shared by fibromyalgia and other chronic pain sufferers.

The King’s College study followed 641 CFS patients who were given cognitive behavioral therapy (CBT) and graded exercise therapy that included light exercises such as walking. CBT encourages patients to think differently about their symptoms.

When used together, researchers say the two therapies helped about a third of the patients recover from CFS, primarily by reducing their fear that exercise and activity would only worsen their symptoms.

Our results suggest that fearful beliefs can be changed by directly challenging such beliefs (as in CBT) or by simple behaviour change with a graded approach to the avoided activity,” said Professor Trudie Chalder of King’s College London. “Clinically, the results suggest that therapists delivering CBT could encourage more physical activities such as walking, which might enhance the effect of CBT and could be more acceptable to patients.”

Many CFS sufferers were outraged by the study and the way it was reported by the news media, feeling it added to a stereotype that they were lazy couch potatoes and malingerers.

“This article has made me so angry. This journalist should live my life for a few days and then maybe they’d reconsider what they wrote,” said one woman in an online comment to a Daily Mail story.

“Sometimes having a shower is like climbing a mountain,” wrote another CFS sufferer. “Until one of these ‘experts’ has had to literally crawl back to bed shaking and ill from just trying to clean their teeth I don’t think they’ll ever be able to understand what we go through.”

“Given the number of athletes and sportspeople diagnosed with this neurological disease, trying to pass it off as 'fear of exercise' is laughable. And lazy!” wrote another reader.

An American neuroscientist also weighed in, disputing the theory that exercise is an effective treatment for ME/CFS.

Our studies clearly show that dynamic exercise like walking or jogging exacerbates symptoms associated with ME/CFS,” wrote Mark VanNess, PhD, a professor at the University of the Pacific in a letter published in the ME blog, Just ME. “Fear and avoidance of what worsens symptoms is a natural defense mechanism against a harmful stimulus. In fact, many researchers here in the U.S. utilize graded aerobic exercise as a tool to worsen and amplify ME/CFS symptoms – not as a treatment meant to be beneficial.

“For a patient with ME/CFS the fear of exercise is a reasonable, knowledgeable, and learned response to a noxious stimulus. If ME/CFS patients could exercise away their symptoms they most certainly would, regardless of the pain.”

Some skeptics in the medical community refuse to accept ME/CFS as a real disease, although it was classified as a neurological disease by the World Health Organization in 1969.

According to the National Alliance for Myalgic Encephalomyelitis, nearly 1 million people in the U.S. and 17 million worldwide have ME.