"Patients’ fear that exercise or activity will make chronic fatigue syndrome worse can significantly hinder treatment of the debilitating condition, according to researchers.
Exhaustion is a defining condition of CFS, also known as myalgic encephalomyelitis (ME), which is thought to affect around 250,000 people in the UK, and can be crippling in severe cases.
Previous research, by some of the same authors, suggested graded exercise therapy (GET), where the level of activity is built up over time, and cognitive behaviour therapy (CBT) are the most effective treatments for the condition. But in a paper published in the Lancet on Wednesday, they say “fear avoidance beliefs” can account for up to 60% of the treatment effect of CBT and GET.
Prof Trudie Chalder, from Kings College London, who led the study, said: “By identifying the mechanisms whereby some patients benefit from treatment, we hope that this will allow treatments to be developed, improved, or optimised.
“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 (as in GET).”
She said fear was understandable given the nature of the condition but that people with ME often did too much on days when they felt the symptoms less, hence the importance of experts guiding them through a gradual increase in activity.
It is unclear what causes ME and the Lancet study does not try to address this. There is deep resistance among some to the idea that it may have a psychological component. The authors of the original 2011 paper detailing the results of the so-called Pace trial, the biggest ever study of treatments for ME, were attacked for suggesting that CBT, one of the psychological “talking therapies”, could help some sufferers. Critics insist that it is a physical disease, which probably has a viral cause.
The findings about fear avoidance did not imply a psychological cause, said Chalder. “We know that beliefs are incredibly powerful, as are behaviours, and they are an incredibly powerful aspect of the nature of the illness. It doesn’t matter whether you’ve got cancer, MS [multiple sclerosis ], depression or CFS, your beliefs are going to be incredibly important.”
Not understanding the exact genesis of a disease did not preclude treating its symptoms, she added.
ME charities raised concerns that fear avoidance would be misinterpreted. The chief executive of Action for ME, Sonya Chowdhury, said: “This does not mean that ME or CFS is a psychological illness. Nor do we believe that people with ME are afraid of taking part in appropriate activity or exercise – appropriate activity might involve a short walk or, for someone with severe ME, small movements or even sitting up in bed.
“In this context, fear avoidance is a well-documented factor that can affect the experience of any chronic pain condition, regardless of pathology.”
Dr Charles Shepherd, medical adviser for the ME Association, said: “We fear that the way in which the results of this study will be reported in the media, and in other medical publications, may help to reinforce the view that rest is bad and exercise is good for people with ME/CFS, and that any reluctance to increase activity levels are more related to fear or avoidance behaviour rather than any underlying disease process involving brain and muscle.”
Written by Haroon Siddique and published in The Guardian