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

But would all these things even have happened to the extent that have?

 

Hello! I think perhaps you are speaking of a view about the past authors of the review? They have all stepped down so it will be a new group of authors, and the editors will be new as well (see the FAQs).

 

Thanks, cassava7! And those 2 organizations both on our list of clinician groups to contact - thanks!

 

Have just submitted a comment on the CBT review to ask Cochrane to withdraw it. I posted the comment on my blog for the record as I've had the experience of my submitted comments going missing.
https://healthycontrolblog.wordpres...est-to-withdraw-cbt-for-cfs-review-june-2020/

 

Hi @Hilda Bastian, thank you for your replies and for joing the forum as a guest.

Haven't caught up with this thread yet, so apologies for just popping in.

I still don't understand why all the well-founded criticism of the exercise review is not reasons enough to retract it, at least temporarily.

I realize that if there absolutely is no other option, your idea to replace the review without delay seems the least harmful thing to do -- but I think the potential harm is far too serious to justify pursuing only the replacement and not the retraction.

Also, thank you for pointing out in one of your blog articles that Cochrane changed their withdrawal policy. Yet I don't understand either, why this can't be challenged.

Recent example for the misleading impact of the Cochrane review:
https://www.s4me.info/threads/lightning-process-study-underway-in-norway.14876/page-18#post-264633

 

thread discussing the other examples

https://www.s4me.info/threads/cochrane-review-and-the-pace-trial.2529/

eta: includes posts by Bob when he was still with us.

 

I had not seen this thread before. It's full of fantastic insights - and very humbling to see Bob's posts - thank you!

 

Once the policy changed, the level of problem needed to retract a review became similar to other journals: and thus, equally difficult, when there's not a consensus. And there isn't consensus that the amended review is causing harm, so I don't think a change of mind is likely, unless something changes (which I will stay vigilant about).

A Cochrane policy like this one typically takes a lot of consultation and debate among the 50+ editorial groups and others before a major editorial policy is changed, and they don't tend to be changed at short intervals as a result. Which is great, of course, when it's a policy that you like; really tough when it isn't.

 

I understand the difficulties, but I will put on record that it is my form opinion that the authors are refusing to retract the review strictly and wholly because of the reputational damage they and their colleagues will suffer and for no other reason. I will also add that the review itself has never served any other purpose than self-promotion and there was never any coherent basis for it in the first place other than as a PR exercise for an alternative medicine pseudoscience.

It seems like such rules should have exceptions, science is definitely not a suicide pact, and this a clear one. Policies should move slowly but this is a simple editorial decision. Again I understand this is hard to acknowledge because it also causes reputational damage to Cochrane, clearly also motivating decisions here. I also don't really understand how the authors could have stepped down while also retaining veto over the review, bit of an odd contradiction.

I'm sure this won't change minds on how to approach this badly needed re-evaluation but we should be clear about why decisions are being made and those are frankly very clear to me. I still think we can make progress but it's important to acknowledge when people are acting in bad faith and from adherents of the BPS school of thought I have never seen anything else, it's a systemic pattern.

Still happy to move forward in good hands but this should be spelled out plainly and I will be making that point in whatever official process happens in the future.

 

The PACE authors sent the message that they would use their media contacts to depict a withdrawal of the review as Cochrane caving in to irrational activists, thereby causing reputational damage.

Maybe a way forward for Cochrane would be think about how to withdraw or change conclusions of the review while avoiding this. And maybe a way would be to be proactive and publish a press release to explain the situation. Get your story into the media first. Instead Cochrane seemed to be trying to hide that the review was problematic.

 

Is there any information about the time it took to change the withdrawal policy? And the process? It seemed quite quick to me. They withdrew the Chinese Medicine review in 2018, and then the policy changed less than a year later in my view to make it impossible to withdraw the Exercise and CBT reviews because there isn't consensus that they harm people. There's never going to be consensus on that is there? There seemed to be no massive years long consultation that usually ensues with a very large Cochrane policy shift like this. Can you find out what the process was? I have never known any Cochrane policy change happen so quickly. The conflict of interest one went on for literally years. I think I was on some working group as "consumer" rep in around 2013/4 endlessly discussing it. And the policy actually changed only last year. But I may be mixing up my policies.

 

Sorry - my mistake - the policy I worked on was peer review. I was interested in ensuring both protocols and reviews had patient input as standard. My fellow committee members didn't seem very concerned about that as I recall

 

Case in point.

https://twitter.com/user/status/1052636273180139520


A few tweets in the thread below from Gerada were subsequently deleted after many users pointed out they were excessive and out of line.

https://twitter.com/user/status/1052847781839130626


And the gall to speak of "lobbying group" when silencing patients speaking out about systemic failure, especially from someone who wields such lobby groups to silence and oppress us. BACME is a literal lobby group for the BPS ideology. We are patients, all of us, sick people demanding redress for massive injustice. And the lies, blatant lies, to dismiss this as lobbying groups while promising to unleash their own to malign us further is completely out of line.

 

Yes, particularly this. Very hypocritical to suggest very ill people criticising poor research is anything like the same as their powerful group of lobbyists who have the ear of their countries political leaders. Shameful.

 

There is never going to be a consensus because the patients KNOW that these treatments cause us harm because we are sitting in wheelchairs or lying in bed or taking flowers to the graves of those who could not endure the suffering of long weary, pain filled years.

On the other side are those who have made careers, reputations and money on the back of their theories which they can only peddle by using bad science, disregarding all evidence that does not fit and using their eminence to lie about anyone trying to bring them to account.

Cochrane should be ashamed of themselves.

 

I don't think that instituting a complete update right after the end of one review and establishing an advisory group is hiding that the review was problematic.

However, there are genuine differences of opinion about many issues. In general, I believe some people who promote interventions have a vested intellectual and reputational interest in those interventions, but I don't assume bad faith in everyone who holds a different opinion about a controversial issue. Impugning the character and motives of everyone one doesn't agree with never resolves any of the many complex areas of entrenched scientific controversies, but resorting to it can make it infinitely harder for people of good will to believe that a case has enough merit to stand on its own.

I've seen the Cochrane Collaboration risk, and weather, reputational damage for taking positions they are committed to - some of them I've agreed with and applauded, some of them I haven't and I've been infuriated by. I'm not seeing signs that a desire to avoid reputational damage is a driving factor here: I'm seeing a genuine commitment to the scientific equivalent of due process. If it wasn't clearly genuine to me, I wouldn't be involved.

I am, though, seeing concern about being subjected to unrelenting and repetitive campaigning laced with lots of insults, because it's at least unpleasant and always a time-absorbing thing to be at the receiving end of. I totally understand why that deters people: I would very much prefer to be avoiding this myself. I just believe more strongly that the questions here are more important than that, and worth tolerating it for.

I totally agree with you that the tactic of impugning activists and casting this as a scientific freedom issue in the media is outrageous, and I think that tactic has done *far* more to deter people from undertaking research on this question than activists have. I just don't think that concern is having a big effect on this right now. It's all about concentrating on the process they've committed to, and doing a good job.

 

I don't think the fact that an old policy is followed until a new one takes its place is any reason to believe there was no lengthy internal process. And I see no reason to believe the policy change had anything to do with the ME/CFS review. It didn't need to be changed "to make it impossible to withdraw the Exercise and CBT reviews" because the policy was discretionary and never applied consistently, anyway: they didn't need a policy reason to not withdraw it. Back when I was working on retraction issues for PubMed, I know they were debating it across those years - it seemed to me to always be about to change, which is why I would check it from time to time - and I left PubMed over 2 years ago now. Out of interest, I'll check it out at some point.

Every Cochrane policy doesn't go through highly public processes: the conflict of interest policy has always been an exceptionally fraught one, and each time it comes up for a new round, there's always a lot of pushing and pulling. (Disclosure: I initiated and wrote the first policy on conflict of interest for Cochrane reviews way back in the day.)

 

This, in a nutshell, is the problem for people with ME. When we try to get justice, we are scuppered right from the start because no one can believe how badly we have been served by certain sectors of medicine for decades. Trying to explain to medical researchers how bad the PACE trial was is almost impossible because no one can believe that a peer reviewer could pass it or a medical journal would publish it if it was as bad as we say, so we must have misunderstood or be exaggerating. You tell them that people could get sicker over the duration of the trial and still be classed as recovered but it is such bad science how could it have got so far and be so widely quoted.

You say that people are deterred because it is unpleasant and time absorbing to be on the receiving end of unrelenting and repetitive campaigning but the answer to that is to listen to us, learn the background, not to tell us to accept what is happening to us. It may be unpleasant for the researcher who is working in good faith, believes the lies about deconditioning and behaviour they have been taught (and they are lies, the people who originated these theories were given evidence they were wrong when they first said them) but that is nothing to the fact that I have been ill since I was 14 in 1968 and there has not been a SINGLE advance in the treatment of my disease in all that time. I have never had a job, driven a car, or been on holiday and never been without pain or had any pleasures in life without paying for it with days of suffering.

We see what is happening in the US and hope that change and justice will come. Let us have some as well. Listen to why we do not feel we get it.

Throw out CBT and GET, stop talking about fatigue (never a required symptom of ME just part of it the way it is part of MS) and TALK to us. We are not bad people despite what they say about us. I applaud the fact that you have joined our forum, it is good to get an insight into why people say and do things. Please encourage these people you feel are genuinely committed to scientific process to join us here. We may disagree, but we do not insult and are very open to discussion.

 

No worries. The story so far: The previous editor-in-chief (David Tovey) proposed withdrawing the review, but agreed to amend it instead, initiating a process involving multiple people. It was advanced but not completed when the new editor-in-chief took over in June 2019 (Karla Soares-Weiser). She decided the amendment did not resolve all issues, and announced a comprehensive update that would involve an international advisory group involving patient advocacy groups when the review was published (at the beginning of October): https://www.cochrane.org/news/publication-cochrane-review-exercise-therapy-chronic-fatigue-syndrome

In October 2019, Soares-Weiser announced the appointment of me as lead for the advisory group process: https://www.cochrane.org/news/appointment-lead-independent-advisory-group I expect there'll be more about this in the upcoming report. We made a further announcement in early March that addresses several of your questions: https://community.cochrane.org/orga...eholder-engagement-high-profile-reviews-pilot There was a timeline: the pandemic has slowed some aspects down, but I'm hoping we'll make up ground.

Review authors draft the protocols for Cochrane reviews, which go through peer review and editorial review and are then published. The same happens with the review. The advisory group will be involved in shaping its own role, but you will see the initial proposal they will be discussing in the link above. I'm expecting we'll have another report in the next few weeks, and that will explain more about who is now involved in what: I don't think any questions on your list will be left unanswered then.