Graded exercise therapy for ME/CFS is not effective and unsafe. Re-analysis of a Cochrane review (2018) Health Psychology / Vink

Will it be able to be included in the NICE review?

 

Good question. I think it should be able to, @Jonathan Edwards can you confirm?

 

https://twitter.com/user/status/1050315158852124672

 

Has Sharpe actually read the paper???

 

https://twitter.com/user/status/1050080930700906497

 

Hopefully, with the mess that is currently happening at Cochrane, this review will be taken more seriously than it would have been before...
https://twitter.com/user/status/1050343979072544769

 

Can we also get rid of the idea( which CDC has again put in it's guidelines) that once a PWME has learned to listen to their body, they are ready to increase their exercise level? Theres no correlation between the two. I have listened to my body for 25 years now but I haven't been able to increase exercise.

 

I hope this re-analysis is brought to the attention of Fiona Watts at the MRC and that she affords the same degree of respect to the authors as she does to the PACE investigators and Cochrane. In other words I hope she makes the effort to read and understand it.

It's excellent and timely. Thank you to Vink and Vink-Niese.

 

https://twitter.com/user/status/1049956156653887488

https://twitter.com/user/status/1049998724603228160

https://twitter.com/user/status/1050002018167853056

https://twitter.com/user/status/1050017804055924737

https://twitter.com/user/status/1050021850196135937

 

https://twitter.com/user/status/1050036087538810880

https://twitter.com/user/status/1050039749300428800

https://twitter.com/user/status/1050284454185439232

 

Nobody else that I can see has mentioned the title : "Graded exercise therapy for ME/CFS is not effective and unsafe."

In my opinion this is poor and confusing English. It has a word missing, and should say : "Graded exercise therapy for ME/CFS is not effective and is unsafe."

Anyone else agree? Or am I making a mountain out of a molehill?

 

I agree. My revised title was
“Graded exercise therapy for ME/CFS is ineffective and unsafe.”
But either is better.

 

I prefer your revised title to mine.

 

You are absolutely right.

 

I've often wondered if any cardiologists were shown the results of the walking test in PACE. I suspect that physicians never read PACE assuming it to be for psychiatrists.

 

Just been re-reading the transcript of Esther Crawleys interview with Phil Hammond re FITNET in 2016
"
[29.28 PH] Finally, one of the big controversies about Chronic Fatigue Syndrome is Graded Exercise Therapy. We said that one of the diagnostic criteria for Chronic Fatigue Syndrome, is that even a small amount of exercise can absolutely wipe someone out for several days, particularly in the severe stages of the illness. A lot of people say they were given Graded Exercise Therapy and it made them even worse, that the activity absolutely floored them; and that whenever you offer it in a research trial or therapeutic approach, you should warn people of the potential harm. Are you doing that ?

[29.52 EC] So the evidence, the best evidence that you can ever get is what’s called the Systematic Review, it’s when you look at all of the papers, and all of the research that’s ever been done, and you combine the data. And the largest systematic review, of over 1,500 people was absolutely clear, there was no evidence of harm."

see this post for full transcript:
https://www.s4me.info/threads/david...-ad-promotes-recovery.5428/page-2#post-111946

 

Here's Cochrane's policy on withdrawing reviews (this came up on another thread):

https://community.cochrane.org/edit...ublished-cochrane-reviews-including-protocols

Apparently a review can be withdrawn because of quality issues.

The policy says, 'The decision to withdraw a published Cochrane Review (or protocol) should generally be made between the authors and the Cochrane Review Group (CRG) editorial team.'

This sounds a bit too chummy. If a review is at fault and its authors refuse to acknowledge that fault, someone needs to step in and force withdrawal.

I've lost track of what advocacy has been done in relation to Cochrane. Has Cochrane been asked to withdraw this review, @Mark Vink, @dave30th, @Jonathan Edwards? If not, is it worth making a call in relation to this policy?

 

Hogwash. Statement only valid if it's all done properly, including ascertaining if the papers under review were themselves good science. And whether your definition of harm captures the kind of harms PwME are talking about.