Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

https://twitter.com/user/status/1263242107273138177

 

https://twitter.com/user/status/1263245268666875904

 

https://twitter.com/user/status/1263246703034953728

 

Absolutely. I have pointed out to Hilda that the three rapid responses to Cochrane's new Risk of Bias tool are relevant to the production of a new review - if they insist on going ahead with it. https://www.bmj.com/content/366/bmj.l4898/rapid-responses. I am fairly sure she will disagree (again) because the responses don't mention the Cochrane exercise review. In my case, the BMJ refused to publish my comment until I removed the reference to PACE and the Cochrane review (on the advice of their lawyers).

It is also ridiculous to re-do the review on Exercise without re-doing the review on CBT. which would now have to include PACE. I have suggested that if they insist on doing a review at all, it should be an overview (aka expose) of all the studies done on treatments for ME - GET, CBT, Lightning Process plus any other therapies eg. Ampligen. The review could focus on the relevant question of "Why are all the trials on treatments for ME so appalling?" It could focus on objective and long-term outcomes like health services-use, disability payment claims, work/study status, physical function etc. plus quality of life, of course. Wouldn't want to do any unscientific second-guessing here - but a review like this would show that all the studies on psychological/behavioral/mumbo jumbo interventions ignore these outcomes because they show the treatments don't work and could cause harm (because they don't measure harms or report the reasons for drop outs). That "possible" conclusion would make the psychologists and psychiatrists and their colleagues and friends very sad - not because of the harm caused to patients by being forced to undergo ineffective and/or harmful treatments for decades, but because of the harm it could cause to their reputations and careers. Perhaps we should do this type of overview ourselves, and let the experts from Cochrane critique it.

 

and also include all the research (eg Workwell) on the biological effects of exercise/activity on pwME.

 

https://twitter.com/user/status/1263245268666875904

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https://twitter.com/hildabast/status/1263245268666875904 

Apologies for any misunderstanding and thanks for whatever you did with regards to putting a warning flag on the old and current reviews. Still hard to trust anyone at Cochrane until there is transparency. Also, still no answer from Cochrane to the request S4ME sent to the editor-in-chief half a year ago (she only wrote she'll "take requests into consideration").

https://www.s4me.info/threads/s4me-...yndrome-review-and-patient-involvement.12188/

I'm aware of the special challenges Cochrane had to deal with regarding the 2019 conference in Chile, also realize the current challenges due to the pandemic. Can't believe these to be reasons for not getting back to our requests for such a long time, though.

 

https://twitter.com/user/status/1263260110509359104

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https://twitter.com/hildabast/status/1263260110509359104

Thank you Hilda, also for the link to the 1st list.

I didn't suggest a DIY list, but was thinking you could put on that list all submissions you think don't fit the other list.

Actually I like the idea of an open document. It just irritates me that it's subtitled "for published comments/critiques that don't fit this list:
1kv3PuQ0XkuD5zyPlRmoxMUSBc21Iat8QXWibeKXgcxY"

Edit 2020/05/22:
Description now removed/ sentence replaced with

"See also this list curated by Hilda Bastian...."

See this post.


That way, if anyone wanted to re-submit one of the declined items, they would not implicitly agree that their submissions did not belong to the category "Commentaries and critiques: Cochrane review [...]".

Edited for clarity.

 

Some promising things but we are about, what, 3 years into that process? Which itself is one specific process out of efforts dating back years prior. There's moving slowly and then there's this. I just want people to stop getting hurt by charlatans peddling the worst form of snake oil ever invented. We can move forward but we have to stop the getting people hurt thing. Which Cochrane know about. And still choose to keep in place. 100% not to the benefit of the patients. Who are supposed to be the primary stakeholders but clearly not here, it's the BPS school of thought that is the full recipient of all benefits, temporary as they may be.

Bastian's nomination is still the only good decision we have seen so far from Cochrane. So I am very much looking forward to the end of behind-the-scenes as it's clear that there are lots of ugly politics happening over there.

I guess that should be expected given the early scorched earth reaction against what is clearly a necessary retraction (and should actually be two retractions). But this will hurt people's reputation and career, it's inevitable and there's no way around it. It's just a very bad look that sick people are torn between politics that have no place happening in a field of science. I just want the science and evidence to guide us forward.

At least it's looking like COVID will force things to move a bit faster, same with the NICE review. Only a matter of time. Some things deserve to be pushed aside temporarily but this is smack in the middle of it. But I hope Cochrane understand that there will be unprecedented scrutiny over this in the near future. The kind that could break the credibility of the organization entirely.

Thank you for those updates, Dr Bastian. The impatience is informed by years of misguided decision-making, we understand how difficult this is, just not why it should be this difficult in the first place. Science is supposed to be self-correcting. Breaking the self-correcting part does no one any good, it literally never does.

 

I have not really kept up with this saga. My take on it is that Bob complained, rightly and cogently, Bob died and although David Tovey tried to do the right thing he didn't make it. Nothing will ever change that.

The trials are all valueless, as I said in my referee's report for the individualised patient data version that never saw the light of day. And as a said in my evidence to NICE and to the Scottish Parliament and .... it is all lost in the mists of time.

This is just basic medical quality control. Anyone who thinks these trials mean anything does not get the psychology of human behaviour in scientific experiments - whether in the lab on in a trial it is the same. Fiona Watt didn't get it. I live in hope that Hilda Bastian might see the wood for the trees. But by God it should never have come to this.

 

Is this the kind of thing that could be submitted to Hilda? Would there be any value in doing so?

 

Hopefully she should be aware of it if she is assessing the history of the review.

 

Belt and braces. Please send it to her anyway. It is not possible to see the referee reports of the original review because freedom of information does not extend to charities. So I doubt if your report would be made available to Hilda either unless she specifically asked for it, and maybe not even then...

 

My latest email to Hilda - God loves a trier, right?!

Dear Hilda

I was a nice surprise to see the note at the top of the abstract linking to Karla’s news article. Someone said something cryptic on Twitter so I had a look. Rachel Marshall said towards the end of my long campaign to try and get a more prominent link from the review to the news article, that she would try to also link to the information about the update (see her email below). Perhaps you could check with her? I still think it’s awful that the “conclusions changed” tag has disappeared because of the various non-content related notes wiped it out.

From: Rachel Marshall <rmarshall@cochrane.org>
Sent: 24 February 2020 11:58
To: Caroline Struthers <caroline.struthers@csm.ox.ac.uk>
Cc: Karla Soares-Weiser <ksoares-weiser@cochrane.org>
Subject: RE: Exercise for CFS Review

Dear Caroline,

With regard to a link to the new statement about the advisory group lead, we are hoping to have a space on the Cochrane.org website where we include all information about the progress of the update of the ‘Exercise therapy for chronic fatigue syndrome’, including statements and updates on key milestones, so that people can have all information on the review in one space. We will then look to link from the review to this page, so we don’t need to keep going through the amendment process for the review every time there is an update. I’m in discussion with the web team about setting this up now, and I will let you know progress on this.

With regard to the “Related content” link/button in the right-hand panel on the Cochrane review, I’m sorry this was not communicated sooner, but we cannot link to Cochrane news statements from this button. This button can only link to a limited number of Cochrane products that go through a particular production process, such as editorials and podcasts. Technically it is not possible to link to Cochrane news statements from that button.

With best regards, Rachel

Rachel Marshall
Senior Editorial Officer
Editorial & Methods Department | Cochrane Central Executive


As I’ve said before, I don’t think starting again with the same “Exercise for CFS” review question is a good idea. It may be a welcome admission from Cochrane that it got it wrong the first time, but that now includes the review question. Things have moved on, and Cochrane is now flogging a dead horse, and ignoring the ongoing harm to people with ME whilst a new review is in preparation. Also, why ignore the 2008 CBT review on the library with the author’s conclusion “CBT is effective in reducing the symptoms of fatigue at post-treatment compared with usual care”. If you’re going to update the exercise review, it doesn’t make sense to ignore the CBT review which has all the same problems with it and is even more out of date.

It would be more useful to produce an overview of all trials on treatments for ME - GET, CBT, Lightning Process plus therapies outside the BPS domain eg. Ampligen, Chinese medicine (using studies from the recently withdrawn review) etc.. The review could ask the more pressing question of "Why are most of the very few trials on treatments for ME so appalling?" It could focus on objective longer-term outcomes like health services-use, disability payment claims, work/study/society involvement status, and short term objective outcomes physical function etc. plus maybe quality of life amongst the self-reported outcomes. A review like this could shine a much needed spotlight on the fact that most of the studies on psychological/behavioural/woo type interventions for ME use ignore or downplay objective outcomes, use methods such as focusing on subjective outcomes to exaggerate the benefits of these interventions, and under report harms and reasons for drop outs. The overall conclusion about the poor quality of research on behavioural and psychological therapies would be a useful take away which could be applied more generally to improve the quality of primary studies of psychological and behavioural interventions. This would allow Cochrane to partly deliver on its stated aim of advocating for better primary research, the studies on which Cochrane reviews are built. Because primary research is so poor, especially in trials of non-drug interventions, which seem to be held to an even lower standard than drug trials, which have their own issues. Cochrane reviews rarely say anything other than more and better research is needed. If you’re lucky, reviewers indicate what a good primary study should look like. But that is quite rare. This failure to advocate effectively was acknowledged by Mark Wilson himself. I will have to dig out the report where this admission is made. It was probably made in a considerably more subtle way that I remember. But it was made nonetheless.

I wrote a proposal to David Tovey in 2018 which outlined how Cochrane could pursue this idea of advocating for better primary research in partnership with EQUATOR. As further discussions in September 2018 were overtaken by other events, I posted it on my blog. https://healthycontrolblog.wordpres...help-improve-the-quality-of-primary-research/

With best wishes

Caroline

 

I have been involved in a Cochrane review that was rejected and will be published outside Cochrane. It is certainly possible to use the structure of a Cochrane review and publish independently.

 

The report was confidential so it is up to Cochrane to let Hilda see it I fear.

 

But this isn't specifically psychologists. Physiotherapists, physicians and statisticians who are involved in the formal pretence that open label studies with subjective end points and inadequately controlled studies are acceptable. This particular review was driven by a physiotherapist.