Around 250,000 people in the UK suffer from chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME). The symptoms include debilitating tiredness, pains, dizziness, insomnia and depression. The standard recommended treatment has three strands: cognitive behavioural therapy, an exercise programme (“graded exercise therapy”) and medication that counters some of the pain, nausea, sleeping problems and other symptoms.
That prescription has been reinforced by a review published in the journal Lancet Psychiatry, which followed a group of sufferers and concluded that cognitive behavioural therapy and graded exercise therapy are better than “specialised medical care”.
The ME Association, however, responded with a detailed criticism of the study. It complains that cognitive behavioural therapy treatment attaches a label that marks CFS as a psychological disease while doing little good. Moreover, graded exercise therapy makes a significant proportion of people worse, it argued, and the hypothesis that those with CFS respond to the therapy because they are inactive and deconditioned “is no longer tenable”. The association pointed to research showing that sufferers have “significant abnormalities in the muscle, brain and immune system”, which are likely to contribute to CFS symptoms and induce fatigue in those compelled, against their inclination, to exercise as part of their treatment.
There is something to these objections. In 2011, researchers in Norway announced an accidental discovery: an anti-cancer drug called Rituximab had eased a cancer patient’s CFS symptoms.
A larger follow-up study published in July this year found that the initial discovery had been no fluke. Of the 29 people in the trial, 18 experienced significant relief from CFS symptoms, with
11 of them still feeling good after three years and some still in remission, with no symptoms, after five. Now, 150 people are taking part in a new study on the effects of Rituximab on CFS. The drug destroys the immune system’s white blood cells; these cells may have been playing a role in creating CFS symptoms.
Things may be about to improve for sufferers. The US National Institutes of Health announced that it has been spending too little on the disease and is planning a study on the possible role of infection in triggering CFS. Oversight of CFS studies has been moved from the Office of Research on Women’s Health to the National Institute of Neurological Disorders and Stroke. In other words, it is being taken seriously.
Educating future doctors about CFS would also help. According to a study into medical students’ attitudes to the syndrome, published by researchers at the University of Manchester, UK students acquire their knowledge “largely from informal sources” and they “expressed difficulty understanding chronic fatigue syndrome within a traditional biomedical framework”. Many didn’t see how it was a medical problem – and some considered sufferers as malingerers or time-wasters.
Future general practitioners need to be made aware that “psychosomatic” should not be the default suspicion. A compromised immune system now looks like a reasonable diagnosis. Although treatments are not yet ready, at least sufferers will not be cajoled on to therapies that might prove problematic. Remember: “First, do no harm.”
This article appears in the 04 Nov 2015 issue of the New Statesman, The end of Europe