The ME Association believes that energy management, which involves both physical and mental activity, is the most important aspect of managing ME/CFS.
Consequently, we welcome research which aims to improve our knowledge of how this can best be achieved.
Energy management programmes must be individually tailored. And they have to take account of the wide range of clinical presentations and disease pathways that come under the ME/CFS umbrella.
We are therefore very critical of over-simplistic exercise regimes which are based on deconditioning, fear of activity and the assumption that people just need to ‘try harder’ in order to get better. Many people with this condition are, in fact, performing at or near their maximum capacity. And some need to actually reduce their activity levels and stabilise their condition before starting any form of increase in activity levels.
In addition, the approach being recommended does not acknowledge the muscle, brain and immune system abnormalities in ME/CFS, which help to provide a physical explanation for the debilitating central (brain) and peripheral (muscle) fatigue that occurs in this illness.
Feedback from patients, who are not normally treated as part of research studies, consistently indicates that around 25% find exercise programmes to be of no value. Around 50% report that their condition worsens as a result.
So the real reason why cognitive behaviour therapy and graded exercise therapy are not producing significant benefits across the whole ME/CFS population is that they are based on a flawed model of illness causation. They are are not taking account of the medical complexities involved.
In our experience, patients with ME/CFS are highly motivated to get better.
They are very willing to take part in energy management programmes that establish a safe baseline of activity, take account of the stage and severity of their illness, involve increases in physical and mental activity that are gradual, flexible and do not result in the person going beyond their limitations and causing symptom exacerbation.
We fear that the way the results of this study are being presented in the media and in the medical press will be interpreted to reinforce the over-simplistic and misguided view that rest is bad and exercise is good for people with ME/CFS.
And without discussing the medical complexities involved, people are led to the conclusion that any reluctance to progressively increase activity levels is far more related to fear or avoidance behaviour than any underlying disease process.
What we desperately need are high quality research studies that are aimed at producing a range of individual energy management programmes based on clinical presentation, stage, and severity of illness.
Dr Charles Shepherd
Hon Medical Adviser, ME Association
Competing interests: No competing interests