The Bristol Cable: Chronic Fatigue Syndrome, Bristol University, and controversial science

[AndyPR]

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.



Words: Lorna Stephenson
Illustration: florencejacksonillustration.tumblr.com

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.

https://thebristolcable.org/2017/07...bristol-university-and-controversial-science/

 

[Barry53]

Never heard of Lorna Stephenson before, but she gets my vote from now on. Brilliantly written article, which does nothing other than tell the truth - it doesn't need do any more than that.

The last line says a lot ...

Bristol University and Professor Crawley declined to comment for this article.

 

[WillowTree]

Great article well deserving of comments.

 

[trishrhymes]

Great to see an article in a Bristol publication criticising Crawley. I hope it has a big impact. Well done to the author.

 

[Jenny TipsforME]

Pleased this is going down well. I missed this thread and started a different one but don't know how to delete that one.

Lorna was quite thorough. She spent a couple of hours with David Tuller. She also seems to have contacted @Jonathan Edwards . She interviewed me via email because I was feeling too ill to talk.

As far as I'm aware she doesn't have an iron in the fire. When I wrote about children with ME for the Bristol Cable a few months ago I was given a really tight word count. She picked up that the story was much bigger and pulled that thread.

Actually much better to have a non pwme write it. We'd do some things differently but it would read as biased.

 

[slysaint]

Lorna was quite thorough.

Do you think she might be open to covering other ME related things (that are not in the Bristol area)?

 

[Jenny TipsforME]

Do you think she might be open to covering other ME related things (that are not in the Bristol area)?

Probably not for the Bristol Cable. I think they always look for a Bristol angle but I don't know if she writes in other places as well. I'd have thought anyone who's done the leg work of learning the context could write another article more easily.

 

[slysaint]

Probably not for the Bristol Cable. I think they always look for a Bristol angle but I don't know if she writes in other places as well. I'd have thought anyone who's done the leg work of learning the context could write another article more easily.

Think this is same Lorna Stephenson:
http://www.redpepper.org.uk/by/lorna-stephenson/

"Red Pepper is a bi-monthly magazine and website of left politics and culture. We’re a socialist publication drawing on feminist, green and libertarian politics. We seek to be a space for debate on the left, a resource for movements for social justice, and a home for open-minded anti-capitalists."

 

[Kalliope]

"Red Pepper is a bi-monthly magazine and website of left politics and culture. We’re a socialist publication drawing on feminist, green and libertarian politic

Lots for her to explore further then..
- Jen Brea's TED Talk
- The Women's Party's manifesto regarding MUS
- Connections between WPD, research and the insurance business

 

[Esther12]

Good to see this. Thanks.