The Bristol Cable blog post, by Lorna Stephenson, 7 July 2017: Chronic fatigue syndrome, Bristol University, and controversial science,
Trials on certain treatments of chronic fatigue syndrome, or ME, have pitted patients against researchers, and scientists against scientists – amid furious clashes on the validity of landmark studies into the condition.
Can chronic fatigue syndrome (CFS), also known as ME, be treated with exercise and talking therapies? It’s a question that splits the scientific and patient advocacy communities, and has become the basis of an intense international dispute.
Scientists researching the treatments claim they’ve been subjected to harassment and abuse, including death threats. But critics say evidence for these behavioural treatments doesn’t stand up to scientific scrutiny, and that pursuing such lines of inquiry runs counter to mounting evidence that CFS is biological, not psychological.
Bristol University is at the centre of these controversies thanks to ongoing trials into exercise and talking therapies for teenagers with CFS, which is characterised by debilitating long-term fatigue that’s worse after exertion, plus symptoms such as chronic pain. The illness can last months or years and in severe cases leaves people bed-bound and even tube fed. CFS has also baffled scientists as to its causes and the biological markers that characterise it – and there’s no drug treatment for it, only medications that can help manage symptoms.
Bristol University’s current research, a trial known as FITNET-NHS, focuses on the efficacy of delivering cognitive behavioural therapy (CBT – a talking therapy) via the internet. Another trial, MAGENTA, recently looked at the outcomes of graded exercise therapy (GET), an approach via which patients follow a regime of gradually increased activity.
Despite the fact that the Bristol trials have got ethics approval, they’ve thrust the university into the spotlight of a worldwide controversy. Opponents, who include scientists and CFS advocacy groups as well as people with CFS, say GET and CBT treatments are harmful, have been tried before to no meaningful effect, and are only being pursued to protect the reputations of researchers and others in the medical science establishment who continue to study them despite them being debunked by a previous, flawed, trial.
Read more about PACE, FITNET, MAGENTA & Bristol University