Chronic Fatigue Syndrome (CFS) is characterised by chronic disabling fatigue where no medical disease has been found to explain it. Fatigue syndromes have been described under a variety of different names over many centuries. And for just as long they have been regarded with suspicion and judgment. The modern conception of CFS came to the fore in the 1980s, when it was briefly (and pejoratively) labelled “yuppie flu”. Myalgic encephalopathy (ME) is a related condition considered by some to be synonymous with CFS and by others as something entirely separate. What sufferers with both these illness labels agree upon is that the word “fatigue” does not begin to do justice to a symptom that leaves those affected confined to their beds for months or even years at a time.

Chronic fatigue patients criticise study that says exercise can help Read more

No single cause for CFS/ME has ever been identified. There is evidence that viral infections can act as a trigger. The possibility that CFS/ME is a disorder of the immune system or a neuroendocrine disorder has also been suggested. Others see it as an illness related to psychological factors or false illness beliefs. Each of these theories has its proponents, and sufferers often feel pulled between different groups.

The question of what is the best form of treatment is also a contentious issue. Some advocate the use of rest and “living within your limits”, believing that exercise is a danger. Others advocate the exact opposite, supporting the introduction of increasing physical activity. Other researchers ignore these issues entirely and focus on immune-modulating therapies for CFS/ME.

This week in the Lancet Psychiatry, a group of researchers at Oxford University, led by Prof Michael Sharpe, published a long-term follow-up study looking at the use of a graded exercise programme and cognitive behavioural therapy for CFS/ME sufferers. The study concludes that at two-year follow-up, patients who received this type of treatment showed a sustained reduction in fatigue and a sustained improvement in their overall wellbeing. Graded exercise and CBT proved more beneficial to patients than standard medical treatment, resting or “living within your limits”. In a field of medicine where there is much conjecture but few multicentre controlled trials on large groups of patients, this work certainly seems to provide good support for the use of these treatments in CFS sufferers.

An accurate reading of the paper makes it clear that the authors do not underestimate the seriousness of the condition

Understandably, however, people who find exercise intolerable can find the suggestion that it might be an important element in the treatment of their condition a very distressing thing to hear. News reports have interpreted this research as implying that CFS/ME is “not a chronic” illness, and “can be overcome by positive thinking”, which does not help. One report states that Sharpe’s work suggests “counselling” for CFS.

If these articles were indeed representative of what the paper claims, CFS sufferers would be quite right to rail against it, as some are already doing. But a more accurate reading of the Lancet paper makes it clear that the authors are not underestimating the seriousness or the chronicity of this condition. The study is not pretending to be a panacea for all sufferers. Nor does it present itself as a cure. It is a piece of the puzzle – an important piece. As it stands, it is the only validated treatment for CFS/ME and is therefore worth our attention and worth offering to patients.

Newspaper reports that refer to a graded exercise programme purely as “exercise” are misleading. The treatment programme offers one-to-one sessions that are carefully considered and that build activity very slowly. CBT supports the patient in dealing with chronic illness day to day. It addresses the difficulty faced by someone who is too fatigued to exercise and is being asked to do just that.

There is very little agreement on the issue of CFS/ME. I think the most likely reason for that is that it is not a single, simple condition – it has many triggers and there are many factors that prolong illness. Therefore two sufferers will not necessarily improve with the same treatment.

There is only one area of absolute consensus between any patient or doctor who has had a close encounter with CFS/ME, and that is that the symptoms are very real and very disabling. This is not a disorder to be taken lightly – it ruins lives.

Whether or not people are in agreement that graded exercise is the answer, what this study shows us is that scientists are still actively trying to find a solution and that is what needs to be encouraged. There are 250,000 CFS/ME sufferers in the UK and they are a neglected group. We can hope from this Lancet study that some will now have the chance of getting better. For the others further research is needed, until everybody has their answer.