Cochrane ME/CFS GET review temporarily withdrawn

mango said:
Great comment by Jörgen Jelstad on Facebook (in Norwegian)

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From Google Translate (broken up for ease of reading):

The Disappeared
19 minutes ago

Cochrane withdraws report on graded training therapy for ME. It is a temporary withdrawal because they believe there is reason to make a more thorough assessment of the report based on critical input.

This is a sensational and unusual step to take for acclaimed Cochrane, which is considered to be a mediator of thorough reviews of medical research. Regarding the Reuters article below, I think it unreasonably emphasizes and problematises that this is based on "patient activism". And here I'll explain why.

Yes, a number of patients and patient associations have been critical of how this review from Cochrane has been carried out. But lately, more professionals and researchers (without ME) have criticized the report and much of the research on graduated training and cognitive therapy against ME.

Cochrane also explains that the decision to withdraw the report is based on the criticisms they have received "addressing issues that need to be considered". They therefore believe that the critics have good scientific arguments for the report to be checked further.

Then it is quite strictly insignificant if some critics are patients. Patients can, after all, also be highly competent people (it is not that statisticians and scientists are immune to disease - so patients can be highly qualified people - if you think otherwise, you have solid patches).

Reuters writes that there is pressure on moving ME away from the "Mental Health" subject to "Long-term condition". Once again, the impression in the article is that this is only based on pressure from patient groups, without any professional team. That it is almost a form of antiviral activism.

However, there are a number of extensive reports in recent years (including the heavyweight Institute of Medicine in the United States) concluding that ME is not a mental disorder. So if you are to follow the academic, scientific arguments, it is only fair and reasonable that ME is moved under "Long-term condition".

It is, however, that which is the weighty argument, and as I expect, Cochrane has brought along. It's not about unreasonable patient activism, but about following scientific developments. But Reuters has not taken the trouble to find some sources that can say something sensible about this. Instead, they draw a source that has never been involved in ME research or can do anything about it.

Once again, committed patients from an already stigmatized diagnosis are drawn as unfair activists who are closest to working "against" the science and professional communities. When the opposite appears to be the case. It is the professional communities that now (finally) appear to be dying after the patients (and of course also a lot of researchers) have said for many years - precisely because research is increasingly showing that patients have been entitled.

Patients have not been unfair or ignorant. On the contrary. They largely seem to have been right. Perhaps the time to give them the recognition they deserve.​
 
mango said:
Great comment by Jörgen Jelstad on Facebook (in Norwegian)
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Yes, very clear, even after Google translate.

Tovey has made it clear that it was not a response to 'patient activism' and as time goes by nobody at Cochrane is going to want to fall back on the suggestion that they caved in to public hysteria. If interviewed by a decent journalist anyone wfrom Cochrane will have to continue t maintain it was because of legitimate scientific concerns.

I note the suggestion is that ME might be moved to 'chronic conditions'. I have no idea what that category is but I wonder whether it has anything to do with MUS and IAPT - which seems to target chronic conditions. In other words is ME going to be handed to Jon Stone and McLeod? I would not be surprised but if so I fear this will be like Butch Cassidy and the Sundance Kid and that guy in the straw hat - you can run but ultimately it is a matter of time before @dave30th appears out of the desert.
 
"The aim of Cochrane Long-term Conditions and Ageing is to support and help coordinate work across across multiple Cochrane Review groups dealing with similar topics.

To accommodate the large number of groups in this network, as well as the wide range of scope, methodological interest, and geographical locations, the Cochrane Review groups have been split into two distinct Long-term Conditions and Ageing Networks; Long-term Conditions and Ageing Network 1 (Senior Editor: TBC. Associate Editor: Liz Bickerdike) and Long-term Conditions and Ageing Network 2 (Senior Editor: Peter Tugwell. Associate Editor: Nuala Livingstone). You can see how the Cochrane Review groups have been distributed in this table."

Long term conditions seems to be a network across specialities rather than a primary disease grouping. Maybe something to find out more about.
 
Adrian said:
She also did a series of training videos for GPs that are worth a look if you want something to raise your blood pressure. Her attitude seemed to be that it is up to patients to prove a treatment is dangerous.
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I think this is them:

Training videos for English GPs on how to deal with CFS patients
Link to video
Link to video
Link to video
Link to video

(perhaps not the originals, but gives you an idea, especially the second one which features Gerada)
 
Jonathan Edwards said:
I note the suggestion is that ME might be moved to 'chronic conditions'. I have no idea what that category is but I wonder whether it has anything to do with MUS and IAPT - which seems to target chronic conditions. In other words is ME going to be handed to Jon Stone and McLeod? I would not be surprised but if so I fear this will be like Butch Cassidy and the Sundance Kid and that guy in the straw hat - you can run but ultimately it is a matter of time before @dave30th appears out of the desert.
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Is this a new category. I know I looked at their different groups a while ago and I don't remember seeing this one.
 
Reuters has a big reach, so I’d expect it’ll be syndicated all over the place.

I do often wonder what a ‘normal’ person thinks when they read an article like that. My impression is actually more optimistic than I’d expect, but it’s difficult to tell when you have your head buried in all these issues most of the time.
 
Jonathan Edwards said:
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.
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In my view, this issue is one of the very first issues that should be explained to new people who are introduced to the world of ME/CFS. Often new people want to help but don't know the lay of the land - virtually everyone new falls into this trap and it takes them years before they catch up and understand how the physical/mental meme is used to detract from the real issues. And tied with, the 'activist' meme. I don't know if there is some kind of primer out there that has already been put together by someone, but I think we need something clear and concise like that to hand to newbies to increase their awareness from the off, with some tips on how to handle it and why it matters that they don't fuel it.
 
It may be worth quoting somewhere the comments from the PACE data tribunal ruling – conclusions near the bottom, part (iv).

Remember that Queen Mary spent around £250,000 on legal advice, and that a major part of their argument was that we patient activists were not to be trusted with such data. The tribunal ruled "It was clear that his assessment of activist behaviour was, in our view, grossly exaggerated and the only actual evidence was that an individual at a seminar had heckled Professor Chandler. The identity of those questioning the research, who had signed an open letter or supported it, was impressive."

If that's the ruling after a couple of days testimony, perhaps Clare Gerada could accept some responsibility for spreading malicious rumours.
 
For newbies who aren't sure of of who Professor Colin Blakemore is, or his connections to ME/MRC/media, here is a link to two comments I posted earlier this year, containing a range of info on CB. I posted it in response to Jonathan's request for info on CB/ME/MRC.

Interesting to note his previous negative portrayals of PWME in the media coverage, plus ca change.

https://www.s4me.info/threads/cmrc-...the-board-of-the-cmrc.2809/page-17#post-54968

Comments 326 and 327
 
Joel said:
In my view, this issue is one of the very first issues that should be explained to new people who are introduced to the world of ME/CFS. Often new people want to help but don't know the lay of the land - virtually everyone new falls into this trap and it takes them years before they catch up and understand how the physical/mental meme is used to detract from the real issues. And tied with, the 'activist' meme.
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The idea that the illness is perpetuated by thoughts and behaviour is ridiculous and without scientific basis and there is nothing wrong with pointing that out. What is wrong, is doing so without going into sufficient detail, for example by talking about this in terms of CFS not being a psychological disorder.

Of course what causes CFS is irrelevant when it comes to PACE and the Cochrane review. They're flawed either way.
 
strategist said:
The idea that the illness is perpetuated by thoughts and behaviour is ridiculous and without scientific basis and there is nothing wrong with pointing that out. What is wrong, is doing so without going into sufficient detail, for example by talking about this in terms of CFS not being a psychological disorder.
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Totally agree, unfortunately that's exactly the mistake people make over and over, and it's very easy for opponents to encourage them into it as well to deliberately maneuver any discussion/narrative into that non-issue of physical or mental. We lose so much traction because of it and have for years. Increased awareness would help I think.
 
strategist said:
They might have won this PR battle, but I suspect they have lost the war over the Cochrane review.

Is it usual for a review to be temporarily withdrawn? Sounds more like face-saving spin to me.
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I'm not sure they have won the PR battle when their argument is they need to stop those nasty patients that doesn't read well. They make no attempt to explain why they believe the science behind the Cochrane review is correct just use it as an excuse to bash patients.
 
NelliePledge said:
I think it’s notable that they’ve had to resort immediately to the bullying activist line - because they do not have anything of substance to use to support their position.
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Exactly. Does not really count as a cogent, scientifically based response does it. Cochrane have already clarified this is not driven by activists - anything else on their part would be untenable. These sort of responses just reinforce how unlikely they are to come up with any viable responses, and shoots themselves in the feet. (Why am I not upset by this :rolleyes::)). And Cochrane must be highly aware they must not just do what is right, but be seen to do so.
Keela Too said:
Yes Clare Gerada is married to Sir Simon Wesseley
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Oh. I'll bet he's feeling chirrupy.
 
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