Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

Nice comment on the petition site @Peter Trewhitt.

Thinking about this, this afternoon, I am wondering why those representatives on the IAG and in the writing team who are there to represent the interests of people with ME/CFS are still sticking with the process.

With NICE, with IQWIG, with CDC, probably with others, a new Cochrane review is redundant. The work has been done and the conclusions are that there is no good evidence to support exercise therapy as a treatment for ME/CFS. A new Cochrane review in, what, two, three, more years? never? is particularly redundant. Simply put, we don't need a new Cochrane review.

What we really need from Cochrane is the removal of the 2019 Larun et al review. And we need that to happen now.

So, how does the ongoing involvement of our representatives in a process that quite possibly will never bear any useful fruit help achieve that review removal in a timely way? Would it not be better for our representatives to give Cochrane an ultimatum - 'remove the flawed harmful review immediately, or the ME/CFS community stops window-dressing this sham process'?

What's the worst that could happen if our representatives withdraw? Cochrane essentially putting an 'approved' stamp on the 2019 review and revealing to the world that they don't understand trial design and review analysis? I don't think everyone in Cochrane wants to do that. But neither do they want to remove that 2019 review, perhaps because people with influence over Cochrane funding don't want it removed. The decision-makers in Cochrane involved seem perfectly happy with kicking the issue down the road for as long as they can get away with doing so. And, at present, we and our representatives inside the process seem to be allowing them to do that.

Of course, I don't know what has been going on, or what pressure has been applied to our representatives. I can only imagine the frustrations of the three years or whatever for those representatives determined to get a good outcome for people with ME/CFS, knowing the harm caused by each month that that 2019 review remains. But, that lack of transparency is a big part of the problem.

I think it is time that our representatives inside the process explained to the ME/CFS community why they continue to stick with it. Do they have a strategy, and is it time to change it?
 
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And one more thought.

Not to diminish the considerable contributions of the ME/CFS representatives on the NICE Guideline committee, but I think its true that there would not have been a chance of a good outcome if there weren't senior 'establishment' and NICE people who were willing to allow the evidence to largely decide key questions like 'does GET work?'.

I'd like to know if there are any such people deeply involved in the Cochrane new review process? Are there people with influence, with clout, committed to good science and a good review process who are willing to stand up against those with influence who want to maintain the status quo?

Given what we continue to see from Garner, who is thoroughly Cochrane establishment; given the two years of complete silence; given the news from BACME that the process had been paused without any announcement, I have to assume that the enlightened 'neutral' people of influence and integrity aren't there. If that's true, then what is the point in flogging a dead horse by trying to find some middle ground that we all know isn't there?
 
While I agree with all the points well made by Hutan and others, I do think, while Cochrane still exists and is regarded at least by some clinicians as providing gold standard reviews, we need high quality unbiased reviews of the evidence related to exercise therapy and CBT for ME/CFS.

If both the current weak reviews are removed by Cochrane and not replaced by accurate reviews based on the evidence reviews done by NICE and the CDC, there will remain a gap at Cochrane that others with agendas are only too eager to fill with reviews supporting GET and CBT.

I think if the current unwieldy and ridiculously delayed process folds, we need a new team to apply immediately to do new high quality reviews using the evidence reviews by NICE and the CDC, and taking into account current diagnostic requirements for PEM, and the extensive evidence of harms from GET.
 
Hutan said:
Nice comment on the petition site @Peter Trewhitt.
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Indeed, an excellent comment, thank you Peter.

I hope you don't mind, I've copied it to post here:

Peter Trewhitt
5 hours ago
In 2020, following further concerns and complaints, Cochrane announced the start of a completely new review process but delegated any response to the issues already raised to the independent advisory group set up as part of that process.

Now in late 2023, the best part of a decade on, Cochrane are again failing to respond to the substance of our concerns, rather fobbing us off with promise of restarting the several year long process of a new review, with now explanation of why it stalled some time in 2021. How many people have been harmed by the inappropriate use of exercise based intervention, how many people with ME have died while Cochrane fails to act and how many more people with ME and with Long Covid will be harmed waiting for this open ended review process to establish a new review.

From the little we know the independent advisory group’s brief is to plan for the new review process and for consumer consultation, not to address outstanding complaints or to address the need for immediate withdrawal of the current flawed review still being cited by researchers, clinicians and service planners to justify what are for many harmful interventions.

Cochrane needs to act now to respond to complaints and well founded concerns, withdrawing the current review that they have acknowledged to be dangerously flawed some four years ago independently of any new review process. Since the publication of the first version of Larun et al’s ‘CFS Exercise Review’ in early 2015 people have been complaining about it. Indeed one of people with ME raising its very serious failings has died whilst waiting for substantive action, Cochrane did at one point intimate they would completely withdraw the flawed review, but then instead allowed the authors to publish a rewrite in 2019, whilst at the same time acknowledging that rewrite to be seriously flawed.

In 2020, following further concerns and complaints, Cochrane announced the start of a completely new review process but delegated any response to the issues already raised to the independent advisory group set up as part of that process.

Now in late 2023, the best part of a decade on, Cochrane are again failing to respond to the substance of our concerns, rather fobbing us off with promise of restarting the several year long process of a new review, with now explanation of why it stalled some time in 2021. How many people have been harmed by the inappropriate use of exercise based intervention, how many people with ME have died while Cochrane fails to act and how many more people with ME and with Long Covid will be harmed waiting for this open ended review process to establish a new review.

From the little we know the independent advisory group’s brief is to plan for the new review process and for consumer consultation, not to address outstanding complaints or to address the need for immediate withdrawal of the current flawed review still being cited by researchers, clinicians and service planners to justify what are for many harmful interventions.

Cochrane needs to act now to respond to complaints and well founded concerns, withdrawing the current review that they have acknowledged to be dangerously flawed some four years ago independently of any new review process.
 
Trish said:
Indeed, an excellent comment, thank you Peter.

I hope you don't mind, I've copied it to post here:

Peter Trewhitt
5 hours ago
In 2020, following further concerns and complaints, Cochrane announced the start of a completely new review process but delegated any response to the issues already raised to the independent advisory group set up as part of that process.

Now in late 2023, the best part of a decade on, Cochrane are again failing to respond to the substance of our concerns, rather fobbing us off with promise of restarting the several year long process of a new review, with now explanation of why it stalled some time in 2021. How many people have been harmed by the inappropriate use of exercise based intervention, how many people with ME have died while Cochrane fails to act and how many more people with ME and with Long Covid will be harmed waiting for this open ended review process to establish a new review.

From the little we know the independent advisory group’s brief is to plan for the new review process and for consumer consultation, not to address outstanding complaints or to address the need for immediate withdrawal of the current flawed review still being cited by researchers, clinicians and service planners to justify what are for many harmful interventions.

Cochrane needs to act now to respond to complaints and well founded concerns, withdrawing the current review that they have acknowledged to be dangerously flawed some four years ago independently of any new review process. Since the publication of the first version of Larun et al’s ‘CFS Exercise Review’ in early 2015 people have been complaining about it. Indeed one of people with ME raising its very serious failings has died whilst waiting for substantive action, Cochrane did at one point intimate they would completely withdraw the flawed review, but then instead allowed the authors to publish a rewrite in 2019, whilst at the same time acknowledging that rewrite to be seriously flawed.

In 2020, following further concerns and complaints, Cochrane announced the start of a completely new review process but delegated any response to the issues already raised to the independent advisory group set up as part of that process.

Now in late 2023, the best part of a decade on, Cochrane are again failing to respond to the substance of our concerns, rather fobbing us off with promise of restarting the several year long process of a new review, with now explanation of why it stalled some time in 2021. How many people have been harmed by the inappropriate use of exercise based intervention, how many people with ME have died while Cochrane fails to act and how many more people with ME and with Long Covid will be harmed waiting for this open ended review process to establish a new review.

From the little we know the independent advisory group’s brief is to plan for the new review process and for consumer consultation, not to address outstanding complaints or to address the need for immediate withdrawal of the current flawed review still being cited by researchers, clinicians and service planners to justify what are for many harmful interventions.

Cochrane needs to act now to respond to complaints and well founded concerns, withdrawing the current review that they have acknowledged to be dangerously flawed some four years ago independently of any new review process.
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Thank you @Hutan and @Trish for your positive response. I always regret not pre drafting posts like this in a separate word processor as I always end up with errors, doing any text this long pushes me to the edge of my cognitive capacity. My big concern here is what I posted, in addition to any typos, contains a potential internal inconsistency: I say both that in 2020 Cochrane delegated responding to the previous complaints and concerns to the IAG and that we have no evidence that the IAG has a role in addressing what previously went wrong and what to do about the current status of the current Larun et al review, rather to just plan for a new review.

I suspect the 2020 deferring of any response to the complaints to the IAG is effectively a disingenuous avoidance tactic and that the IAG will not have any role in evaluating Cochrane’s previous conduct, leaving the strong possibility that the current review will remain online until an unknown point in time when the new process produces a replacement review however many years down the line meaning that is. I suspect Cochrane are attempting use the new process to brush their failings so far under the carpet. However these points are my speculation and I should have made that clearer in my post.
 
Peter Trewhitt said:
I say both that in 2020 Cochrane delegated responding to the previous complaints and concerns to the IAG and that we have no evidence that the IAG has a role in addressing what previously went wrong and what to do about the current status of the current Larun et al review, rather to just plan for a new review.
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I think your comment was correct.
In Hilda Bastian's update on the IAG in August 2021 she said this:

Progress on the first document for consultation and other recent major reviews
In previous reports, I’ve discussed the process we have used to engage with criticisms made of the Cochrane review on exercise since 2008. Along with documents submitted to the IAG for consideration, they were analysed to identify specific points for consideration: there were over 100. This collection of points will form the basis for discussion, consultation, and reporting as the review progresses....
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And continues on about the process in some datail.
https://community.cochrane.org/orga...ngagement-high-profile-reviews-pilot/cochrane
 
Trish said:
Now in late 2023, the best part of a decade on, Cochrane are again failing to respond to the substance of our concerns, rather fobbing us off with promise of restarting the several year long process of a new review, with now explanation of why it stalled some time in 2021. How many people have been harmed by the inappropriate use of exercise based intervention, how many people with ME have died while Cochrane fails to act and how many more people with ME and with Long Covid will be harmed waiting for this open ended review process to establish a new review.
Click to expand...
this para is repeated later on? cut and paste error?
 
Hutan said:
Nice comment on the petition site @Peter Trewhitt.

Thinking about this, this afternoon, I am wondering why those representatives on the IAG and in the writing team who are there to represent the interests of people with ME/CFS are still sticking with the process.

With NICE, with IQWIG, with CDC, probably with others, a new Cochrane review is redundant. The work has been done and the conclusions are that there is no good evidence to support exercise therapy as a treatment for ME/CFS. A new Cochrane review in, what, two, three, more years? never? is particularly redundant. Simply put, we don't need a new Cochrane review.

What we really need from Cochrane is the removal of the 2019 Larun et al review. And we need that to happen now.

So, how does the ongoing involvement of our representatives in a process that quite possibly will never bear any useful fruit help achieve that review removal in a timely way? Would it not be better for our representatives to give Cochrane an ultimatum - 'remove the flawed harmful review immediately, or the ME/CFS community stops window-dressing this sham process'?

What's the worst that could happen if our representatives withdraw? Cochrane essentially putting an 'approved' stamp on the 2019 review and revealing to the world that they don't understand trial design and review analysis? I don't think everyone in Cochrane wants to do that. But neither do they want to remove that 2019 review, perhaps because people with influence over Cochrane funding don't want it removed. The decision-makers in Cochrane involved seem perfectly happy with kicking the issue down the road for as long as they can get away with doing so. And, at present, we and our representatives inside the process seem to be allowing them to do that.

Of course, I don't know what has been going on, or what pressure has been applied to our representatives. I can only imagine the frustrations of the three years or whatever for those representatives determined to get a good outcome for people with ME/CFS, knowing the harm caused by each month that that 2019 review remains. But, that lack of transparency is a big part of the problem.

I think it is time that our representatives inside the process explained to the ME/CFS community why they continue to stick with it. Do they have a strategy, and is it time to change it?
Click to expand...


I do feel for anyone who might be a representative. It must be so beyond disappointing to have put so much energy in, when we think abou proportionally how much that really meant vs 'spare' energy compared to others, and how they may well have sacrificed their health as well as essential tasks and other opportunities etc.

So I do think it is worth acknowledging their position and I wonder whether - given with these things who knows if it is that simple for them, whether they can/can't speak about things, what they might have signed, how that applies and so on - whether one thing that might offer them help is whether there is anyone who knows about these things and could therefore actually advise them on whatever position they are in and what is involved with or any limitations they might need to be aware of etc to give them peace of mind if they are needing to make decisions?
 
Trish said:
This has just come by email from the editor in chief of Cochrane:
_________________

Dear members of the Science for ME Committee and Forum,
Thank you for your email and sharing the open letter and petition.

After an unplanned hiatus, the Independent Advisory Group resumed its work last month, including preparing to resume public reporting and general communication. A first report and project website update is planned for release in the next few weeks. Reports and updates will be notified to those who subscribed to the email list at exerciseforme-cfsupdates@cochrane.org

We do regret the lengthy delays in this project, and are taking the concerns and requests in your letter into consideration.

Please subscribe to the above email for further reports and updates. Thank you.



King regards,

Office of the Editor in Chief
____________
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"Unplanned". Yeah this is the right word. We literally didn't know there was a "hiatus". Unplanned means it happens without warning, not that there is no communication whatsoever about it. Not even a word as to when this "hiatus" even began, how long it lasted, or any information.

And it took them a month to come up with this BS? And meaningless waffle straight from a call center recording? "Your calls are very important to us, please stay on the line while we prioritize your concerns".

Completely unserious organization. Cannot even take any responsibility for anything they do. This is supposed to be an independent process and not a word out of Bastian. What a clown show, and more of a IT type clown that the common one.

I don't believe a single word in this cheap reply, and I include the common ones.
 
Thank you very much to MECFS Canterbury in New Zealand for their support of the campaign.

You might remember that last time I reported signatures per capita, Norway and New Zealand both had rates of support around 75 per million of population. As of a couple of days ago, that has increased to 92 per million in Norway and 114 per million in New Zealand. The next highest countries with significant populations are the UK, Denmark and Australia with signatures per million of population in the 30's.

So, big thanks to the advocates in New Zealand and Norway in particular for the amazing job they have done over the years and just recently to ensure that the ME/CFS community understands the problems with GET and BPS studies and Cochrane.

I think it's useful to keep the campaign going, especially to try to get more organisations listed as supporting it. It would be particularly great to get more Long Covid organisations on board, as it's so important that people with LC ME/CFS understand that lack of recovery does not equal lack of willpower.
 
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:broken_heart::broken_heart::broken_heart:

Today is the 4th anniversary of the publication of the flawed 2019 review 'Exercise therapy for CFS' by Larun et al. It is also the 4th anniversary of Dr Karla Soares-Weiser admitting the review is not fit for purpose and promising a new review to be completed in 2 years.

Almost daily we are seeing examples of GET being advised by clinicians, taught to other clinicians, argued for in article published in medical journals, and people suffering and dying as a result of this harmful treatment.

Shame on you Dr Soares-Weiser. And shame on the clinicians continuing to promote such harm.

:broken_heart::broken_heart::broken_heart:
 
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