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Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian
rvallee
Senior Member (Voting Rights)
Completely underwhelming. All I get from this is that Cochrane is a completely dysfunctional mess that is incapable of putting together a competent effort, and we already knew that. Aside from a personal tragedy, all the excuses are directly Cochrane's fault, and the complete secrecy surrounding everything makes it even worse. Blaming this on confidentiality is moot when it's their own misguided policy, and there is simply no need for it anyway.
There was no reason to have confidence in Cochrane in the first place, and they are making an even stronger case for shutting down this terrible organization. Using the excuse of the pandemic, which actually increased the urgency, makes all of this even worse, shows that no one in that place understands the stakes, and are still giving in to the self-interest of a few quacks for no actual reason.
I read a lot of blaming the dysfunction on complaints about the dysfunction as well, which is just asinine. If we weren't so ill and isolated, showing this much disrespect would have resulted in in-person protests on a large scale in most cases. What a mess. It shows how much of medicine is totally removed from reality, is entirely focused inward on self-interest and far too often not only does not serve the interests of patients, but actively works against us.
Nothing in there restores any confidence in Bastian either. If the main reason for this excessive delay, and all the evidence points to it, is obstruction and delay tactics by the quacks, it's still 100% Cochrane's own fault here. What a truly worthless organization.
There was no reason to have confidence in Cochrane in the first place, and they are making an even stronger case for shutting down this terrible organization. Using the excuse of the pandemic, which actually increased the urgency, makes all of this even worse, shows that no one in that place understands the stakes, and are still giving in to the self-interest of a few quacks for no actual reason.
I read a lot of blaming the dysfunction on complaints about the dysfunction as well, which is just asinine. If we weren't so ill and isolated, showing this much disrespect would have resulted in in-person protests on a large scale in most cases. What a mess. It shows how much of medicine is totally removed from reality, is entirely focused inward on self-interest and far too often not only does not serve the interests of patients, but actively works against us.
Nothing in there restores any confidence in Bastian either. If the main reason for this excessive delay, and all the evidence points to it, is obstruction and delay tactics by the quacks, it's still 100% Cochrane's own fault here. What a truly worthless organization.
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It's really hard to know from here how hard any individual involved in that string of excuses has worked to try to make the information relevant to ME/CFS that is hosted by Cochrane better. It's possible that Hilda truly understands the terrible impact of the exercise therapy review and did whatever she was capable of to try to improve things. It's even possible that the Editor in Chief has done that. We don't know what those who want that review to stay in place have done and have threatened, what power they wielded.
But yes, Cochrane as an organisation has utterly failed to uphold the values they say they stand for.
Ariel
Senior Member (Voting Rights)
I have been unable to follow some of this; is anything happening/is there any movement? Is it just more delay or is it saying the review will stay up? (Is there a difference at this point)? xx
Edit: I had not seen this, but am still wondering what people think will happen/what the upshot is
Edit: I had not seen this, but am still wondering what people think will happen/what the upshot is
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rvallee
Senior Member (Voting Rights)
There really isn't anything in there that addresses the issues presented in the petition. No doubt they will ignore it anyway, but the problems still stand and immediate retraction remains the only valid course of action. There is clear indication that there will still be more excessive delays, likely several more years, on top of 3 years of false delayed promises, themselves on top of several more before that since the same issues have been raised.
The rest is just Cochrane dysfunction and general incompetence, with all the consequences falling on the patients. If there's anything suggesting that the IAG is the proper solution to this mess, it hasn't been communicated by the IAG or anyone else, so the problems all remain.
I think what will happen is the old harmful review will stay in place for several more years, with another useless editors note attached saying a bit more about it being due to be replaced sometime.
The process for getting a new review to publication and past all the hurdles looks likely, from what is still to be done, to take at least 2 more years. If it does reach publication there will undoubtedly be more complaints from one side or the other until something happens in biomedical research to make it all redundant.
The process for getting a new review to publication and past all the hurdles looks likely, from what is still to be done, to take at least 2 more years. If it does reach publication there will undoubtedly be more complaints from one side or the other until something happens in biomedical research to make it all redundant.
rvallee
Senior Member (Voting Rights)
This looks like the only realistic scenario. When Marshall and his team invalidated everything about psychosomatic peptic ulcers, there was a lot going on and it would not have stopped without this bombshell. They'd still be the centerpiece of psychosomatic ideology. At some point long ago psychosomatic medicine became an industry, and the only way to replace it is with a productive one, piece by piece.
The only X-factor is AI basically making most of evidence-based medicine, and organizations like Cochrane, obsolete by being able to produce full systematic reviews in seconds, essentially killing most of the industry. Once the jobs programs are gone, things may begin to change. As will being able to count things that no one bothers to. The ROI of biopsychosocial ideology is abysmal, and generally so does most of evidence-based medicine.
Or we may get lucky and Cochrane may go bankrupt. It's not as if they're actually delivering anything, and anyway somehow healthcare is all culturally focused. Aside from basic research, every country does their things in isolation from one another.
NOne of which, as far as I can see, stops them from withdrawing the old review.
I think they are trying to 'reframe' and distract by shifting focus to the dangly keys pretending people have asked where the new one is and thrown out lots of sympathy stuff for that to twist what is beyond a reasonable request - after goodness knows how many years and no good excuse for it, just remove it - into pretending it's about 'where's the work'.
I'd say a response of:
that's all very well
but on the topic of the question in the actual petition: you know the one that just needs you to withdraw the old one, and needed to be done years ago, and has nothing to do with any of these distractions.....
is it time you had the good manners to answer the question asked instead of ignoring it?
I'm sure we all echo that. We have a condolences thread here if anyone wants to add a comment.
Caroline Struthers
Senior Member (Voting Rights)
I don't understand why the complaint from the pro-review people was investigated and mine, also very detailed, about Karla Soares-Weiser wasn't. I will contact COPE who said they were writing to Cochrane to ask this.
cassava7
Senior Member (Voting Rights)
And neither has S4ME’s complaint.
It's too soon to say what processes Cochrane will go through with our formal complaint as we submitted it less than 2 weeks ago. The website says we should get at least an initial response in 2 weeks, than regular updates on progress if it is going to take longer.
This seems to be a very important point. Caroline, can you remind us what Cochrane's response to your complaint was?
rvallee
Senior Member (Voting Rights)
Mostly seems to boil down to:
Ultimately, they answer to no one on this stuff. If they don't follow their own rules, there's no one to hold them accountable for it. Rules are just words, unless enforced, they're totally useless. Same with principles. Even when written plainly, it only matters if there are consequences.
Normally there would be justified outrage from professionals, but it doesn't work for us since we are maligned and the psychosomatic industry is more important than our lives. And thanks to decades of effective propaganda, and loads of pseudoscience, everything we do is assumed to be wrong, so everything done against us is presumed to be right, even for our own good.
Caroline Struthers
Senior Member (Voting Rights)
The CEO initially said she was seeking advice on how to investigate it independently. And then suddenly she said they weren't going to investigate at all and the subject was closed.
Sly Saint
Senior Member (Voting Rights)
Just thinking about this today. I think they said they are going to rewrite/update the comment by the editor at the top of this review.
As she said in the current comment
On the out of date review on CBT it says
"the review is no longer current. It should not be used for clinical decision‐making."
Cognitive behaviour therapy for chronic fatigue syndrome | Cochrane
the same should surely apply to the exercise review(?)
(even more so now given the research since 2019, the research on 2 day cpets that were absent from previous reviews on exercise and more people with LC being diagnosed with ME/CFS).
As she said in the current comment
Publication of Cochrane Review: ‘Exercise therapy for chronic fatigue syndrome’ | Cochrane
On the out of date review on CBT it says
"the review is no longer current. It should not be used for clinical decision‐making."
Cognitive behaviour therapy for chronic fatigue syndrome | Cochrane
the same should surely apply to the exercise review(?)
(even more so now given the research since 2019, the research on 2 day cpets that were absent from previous reviews on exercise and more people with LC being diagnosed with ME/CFS).
cassava7
Senior Member (Voting Rights)
This is a fair point but I strongly suspect that the people in favor of the review who complained about the update process did not have to wait two weeks to obtain a response from Cochrane.