Cochrane ME/CFS GET review temporarily withdrawn

Click on the tweet to see the thread. Someone tries to educate her about the flaws in the Cochrane review, her response is "I'm an expert but thanks". I don't think she's trying to be funny.

 

Deadly serious, I'm afraid. She thinks that because she was misdiagnosed that ME is a wastebasket diagnosis and a kind of identity politics spread by the internet.

 

I don't think people should get their hopes up at all. I'm predicting minimal changes at most.

 

Also this seems like it might be another 'shooting themselves in the foot' situation. The article was obviously seeded by the authors of the review or their 'group' given that emails sent to them were seen. And the journalist must have been pointed in the direction of Colin Blakemore, (or she knew him as a previous contact). But it seems that all they have achieved is spreading the good news that the review has been withdrawn.

They must have very sore feet by now

 

I did. That was what made me think it was a joke.

 

I agree.

The way the reuters article is written is... 'interesting'. It is like they just asked Blakemore or someone like him for his opinion in order to give him some space to either protect his vested interests or blatantly misrepresent the situation for some other reason. It should be impossible to be a professor of neuroscience and also genuinely not understand that the body of research that has been produced over the last decades does anything else than show that the approaches we are subjected to are, at best, mostly a useless waste of time for everyone involved.

Our entire point is that Cochrane's reviews should, in fact, be based on scientific evidence and not influenced by commercial pressures. What we are trying to get rid of is non-scientists posing as the real thing trying to make money off abusing sick people (while probably also displacing real treatment, but that is debateable and at least somewhat situational). If pointing this stuff out counts as harrassment, I guess being worse than when you started a treatment can count as recovered - admittedly, I am not a native speaker of ye olde English language, but even to me it seems like these people just generally do not understand (or want to understand) the very words they use.

It should not be a decision to 'reach with difficulty' at all to scrap a review that was done by someone who did a meta-review without understanding how to evaulate the topic properly (as in, technically correct from a scientific standpoint). There really are not a lot of different opinions that can be formed from looking at the actual research (i.e., don't just skim and read the 'conclusions' section...) other than that we do not understand how to exercise people with ME safely, or if we want to exercise them at all (but so far what we have is pointing towards 'rather not').

Again, the article concludes with the same strawman-debate they tend to when dictated by people who actively do not want to understand the discussion around ME - that some people don't want a mental disorder label or prefer to blahblahblah all in the mind something something body dualism physical disorder influenced by yaddayaddayadda, when the real point is and always has been that the evidence from the very trials which are always cited either is of so poor quality that it is no evidence of anything at all (due to trial design flaws etc), or show that the 'psychological approaches' do not work period even in other disorders like depression. We are not primarily arguing that we are debilitated in this way or that way and therefore this or that has to be whateverwhichway suits us, we are arguing that we would like approaches that actually work.

It is not helping that, nonsurprisingly, the reuters piece somehow did not stress the fact that the words 'improve' and 'recover', when used by the people who write the studies in question, tend to not refer to these concepts as they would be understood by people outside the psychiatric field, but really mean 'regain as much control over one's life as can reasonably be expected'. So the people who oppose our criticism may be technically correct in a really weird way if you view the issue from inside their own field - if you did everything you can to get as much control back as was possible and still have a null result you have achieved 'recovery' in the way they use the term. But it has to be stressed that them talking about recovery literally means 'no change at all'!

If Blakemore is not misrepresented here in what he has actually said, i.e. him shifting the blame on those lobbying in favour of science and somehow failing to mention that Cochrane initially has to have caved in to pressure from people trying to push treatments without evidence to make some money (or even darker purposes) - or at least genuinely made a mistake - is what he actually said, I do not see how he can retain his position as a professor in a scientific field. Maybe he has not really read the studies which he defends, but if he hasn't it is still inexcusably lazy at this point.

 

I emailed them last night explaining why it was misleading for them to present Blakemore as a neutral figure without any personal stake in this dispute, and asking them to amend the article to make his connections to the PACE trial - and consequently this Cochrane review - clear. I'm not holding my breath though.

 

Especially if they realise that CBT in this context is used to change patients supposed wrong illness beliefs rather than to help people cope with a serious physical disease, so I'd say as soon as that penny drops they should dismiss CBT research, not to mention the fact that the problems with GET are also present in CBT research.

 

If the PACE/MAGENTA etc. debacle has shown us anything, it's that any number of professors in the UK can come out with all sorts of utter rubbish without professional consequence. Their universities don't care and their colleagues will back them blindly against patients.

 

Wow! Jennifer Brea quote is SO true, quote worth keeping:

"If activism is the dogged defense of rigorous methods and sound science in the service of saving lives, then all scientists should be activists."

 

https://twitter.com/user/status/1052700336958398464

https://twitter.com/user/status/1052837507879059456

 

I wonder if Retraction Watch will do a piece on these news? They've done several on PACE.

 

Did she read the article?
"
Tovey confirmed to Reuters that he had made a decision to withdraw the review temporarily, saying this would give the authors time to respond to several points in a complaint which “we felt ... raised issues we needed to address”.

“This not about patient pressure,” he added in a telephone interview. “This was a decision we reached with difficulty because we know the incredibly challenging environment this review sits in.”

 

Worth contacting them, @dave30th?

 

I wish that were the case but it is a bit more complicated. For instance, Carol Monaghan, who has taken the lead in the UK Parliament to raise the issue of PACE, presented the problem to Parliament in these terms - treating the illness as psychologicical rather than physical. It is all too easy for this meme to dominate the advocacy. Other MP speakers at the last Westminster Hall debate also took the mental/physical line. It gets used regularly by charity based advocates. It is all too easy to undercut.

 

https://twitter.com/user/status/1052843931883458560

 

Could someone like @Trish tweet to Gerada re

"And do patients have no bias? What about powerful unrepresentative patient lobby groups ? Should not they have to publish their COI & funding sources."

I would like to know from Dr Gerada what she thinks my conflictive interest is, as one of the referees who pointed out the poor quality of this review. Jonathan Edwards, Professor Emeritus, UCL.

 

https://twitter.com/user/status/1052690357090058242

https://twitter.com/user/status/1052835243378520069

https://twitter.com/user/status/1052835508152356864