'Consumer-Contested Evidence: Why the ME/CFS Exercise Dispute Matters So Much' PLOS Blog post by Hilda Bastian

Consumer-Contested Evidence: Why the ME/CFS Exercise Dispute Matters So Much

A biopsychosocial camp has contended since the 1990s that regardless of how it starts, people with ME/CFS dig themselves into a hole with their attitudes and behaviors, leading to physical deconditioning (sort of the opposite of getting fit). They argue that people can dig themselves out of it by changing their beliefs and behaviors with the help of cognitive behavioral therapy (CBT) and graded exercise therapy (GET).

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ME/CFS groups see it differently. For them, the condition is more complex than fatigue and fitness, and believing you can recover won’t overcome it. From their experience and surveys since 2001, GET in practice causes relapses, worsening symptoms for most people; CBT doesn’t change the condition’s symptoms; and self-management “pacing” does help.

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By the early 2000s, the biopsychosocial camp could claim a few small trials in support of their position, but it was a very weak evidence base. They saw their treatment approach as a good news story for patients, though, and they had a lot of supporters. Exercise is something of a sacred cow to many – including in the evidence community. So there was a constituency that wasn’t going to be as critical of studies claiming advantages of exercise as they might be for other treatments.

There was another powerful camp that was attracted to the idea that cheap short interventions could get rid of ME/CFS, if only the person was willing to make an effort: insurance and welfare stakeholders. It was in their interests to reduce treatment expenditure and income dependency for this fairly common condition. The close associations disclosed by ME/CFS researchers in the biopsychosocial camp with these policy communities have the potential to be conflicts of interest – and they are certainly seen that way by many.



https://blogs.plos.org/absolutely-m...-the-me-cfs-exercise-dispute-matters-so-much/

 

Thank you for finding this and posting. The article is long, clear, reasoned.

 

A very good article I think.

 

I think it's really good for us to have someone like Hilda Bastion take the time to look into things like this, and then post a blog that is really supportive of patients and our right to engage in the debate around issues like PACE. It shouldn't be controversial, but it is, and it's great that she's raising concerns with a different audience, and doing so in a way that emphasises that this is something with lessons for those who have no real interest in ME/CFS.

Lots of really good stuff in there, eg:

It seems she's actually taken the time to read and think about comments from people like Courtney and Kindlon, and that's really great. (Does that sound patronising? I don't mean it to - I'm just so used to academics commenting on these issues without doing even minimal reading).

The conclusion:

It's a wide ranging post, and as with any post about ME/CFS there are bits I'm a bit less sure on. I wondered if sometimes she simplified some of the GET stuff in a way that could lead to someone like White criticising her. I didn't see any bits that I felt sure were wrong. Maybe this is just a result of technical errors?

I wonder if that's just QMUL changing web addressed in annoying ways? It does also seem various documents go on and off line, but I get the impression that's more technical incompetence than anything else.

 

I probably should have posted that comment under her blog as a thanks to her.

 

Paul Glasziou has been pretty bad for us, so I'd say that makes the blog even more impressive.

 

Would it be worth contacting her re. the ME Wikipedia page?

 

Please leave comments and thank you on her blog. This article clearly took time and effort.

 

https://twitter.com/user/status/1094139380392853504

 

Can somebody give her a brief explanation, either on her blog or on Twitter, of why AfME's statement that "Over time, when your condition stabilises, you can very gradually increase your activities to work towards recovery." is much too broad and optimistic, compared to the patient experienced reality?

 

Agreed. For a while though, the idea that pacing would lead to meaningful improvement was popular. Four or five years ago, when I joined PR, it was a common belief.

 

She is a star! See on her website;

So Far in January 2019
News for 2019: I'm pleased to announce that I'm now a regular contributor to BMJ Blogs. I'll be generally doing (shorter) versions of suitable posts from PLOS Blogs. First up:

Evidence and choice - what does one mean without the other?

And I updated my Twitter profile pic for the first time with one of my favorites.... Hmm... Too statistical?

 

This has made my day! Someone who GETs it!

 

Questioning the wisdom of her PhD supervisor shows genuine courage unlike another mostly well-reasoned commenter of Bad Science...

 

I've posted these as the forum
https://twitter.com/user/status/1094184971248562177


https://twitter.com/user/status/1094185597248389120


https://twitter.com/user/status/1094186559677579264

 

Wikipedia doesn't like expert involvement so it would probably not have much effect. It works on consensus, even if the consensus is wrong. Usually works, with us it's pretty bad.

 

I dare say, this has a whistleblower feel to it. I hope it encourages more people to speak up about things they saw from within that seemed odd and unethical but did not dare question the eminence of those in charge, especially given the obvious political nature of the whole psychosocial project.

I'm also thinking this may explain the internal deliberations at Cochrane that we glimpsed but could not really determine. I don't know if Cochrane always works in double super-secret and cryptic language but this may explain some of it.

Very well-researched article. This is quite a breakthrough. Is a COSMIDORCID required to comment? I'd imagine so, wanting comments from professionals and not random people?