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

Posting this here for now, since I can't think where else to post it.

Cochrane sometimes published comments about reviews which are submitted via their official comments system.

There are 3 comments about the 2019 Larun review plus a series of comments about older versions of the review.
They can be read here:
Exercise therapy for chronic fatigue syndrome
Lillebeth Larun, Kjetil G Brurberg, Jan Odgaard-Jensen, Jonathan R Price | 2 October 2019
Comments

There is a new comment that has just been added. Since it's short, I'll copy it here:

Lack of clarity that exercise therapy has no clinically important effect
Published : 15 August 2024
  • Ann Milne
The abstract currently states that "Exercise therapy probably has a positive effect on fatigue in adults with CFS compared to usual care or passive therapies". There is nothing in the text to explain that the rating of moderate certainty evidence allowing the use of the word "probably" is for a "non-zero" effect on fatigue. This means the effect is not clinically important. Please can you explain why this isn't clarified anywhere the text of the review, either in the abstract or the discussion?
 
Trish said:
Posting this here for now, since I can't think where else to post it.

Cochrane sometimes published comments about reviews which are submitted via their official comments system.

There are 3 comments about the 2019 Larun review plus a series of comments about older versions of the review.
They can be read here:
Exercise therapy for chronic fatigue syndrome
Lillebeth Larun, Kjetil G Brurberg, Jan Odgaard-Jensen, Jonathan R Price | 2 October 2019
Comments

There is a new comment that has just been added. Since it's short, I'll copy it here:

Lack of clarity that exercise therapy has no clinically important effect
Published : 15 August 2024
  • Ann Milne
The abstract currently states that "Exercise therapy probably has a positive effect on fatigue in adults with CFS compared to usual care or passive therapies". There is nothing in the text to explain that the rating of moderate certainty evidence allowing the use of the word "probably" is for a "non-zero" effect on fatigue. This means the effect is not clinically important. Please can you explain why this isn't clarified anywhere the text of the review, either in the abstract or the discussion?
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Interesting! The authors are supposed to respond to comments. They didn't bother with Michiel Tack's well referenced comment in 2020 (a Cochrane editor responded referring to the new review process), or the one in 2023 saying how the outdated review was still informing guidelines three years later. There was no response to that comment at all. This new short comment is a question directly to the authors...I don't see how they can wriggle out of responding, but I'm sure Cochrane will let them off the hook somehow
 
We have a new petition update today:


Thanks to our supporters
Thank you to the 11,300 people supporting the campaign from 76 countries.

Thank you also to The Grace Charity for M.E. for adding their support to this campaign. We now have 76 organisations calling for the 2019 review to be removed, including most national ME/CFS charities. You can find the full list here. If an organisation you are connected with isn't listed, please tell them about this campaign.

People with ME/CFS-like Long Covid are also being targeted with psychobehavioural therapies such as graded exercise. It is important that Long Covid organisations understand that there is no credible evidence to support the use of graded exercise therapy in post-infection fatigue syndromes. If you know of a Long Covid organisation, please consider informing them about this campaign.

*******
Our latest letter to Cochrane
On the 7th of August, the Science for ME forum committee sent another letter to Cochrane summarising our efforts over the last 11 months to communicate with them about the 2019 Larun et al review. You can read the letter here.

In the letter, we asked a number of questions about Cochrane's priorities and the status of the formal complaints we submitted 9 months ago. We noted that if Cochrane continues to not take action, "we will be forced to conclude that Cochrane does not take its own policies and charitable objectives seriously and to consider our next steps, including taking our complaints to other bodies". We have not yet had anything more than an acknowledgement of receipt of the letter.

*******
The broken promises continue
There are so many, that we have decided to just cover two in each of our updates. In the last update we talked about these two:
* Broken promise 1. Resumption of monthly updates from the Independent Advisory Group (IAG) - still broken
* Broken promise 2. Revision of the editorial note on the 2019 Cochrane Exercise Therapy Review - still broken

Here are another two:

* Broken promise 3. New IAG member
In the December 2023 IAG update, Hilda Bastian invited nominations for a new position in the IAG specifically for a doctor who treats people with ME/CFS. While we don't see the expansion of the IAG as real progress, it is possible that while this vacancy remains, the IAG will not function. There has been no appointment announced.

* Broken promise 4. Public consultation on a report on problems with previous reviews
In the June 2021 IAG update Hilda Bastian promised a public consultation process on a draft document summarising the criticisms made of the current and previous versions of the Cochrane Larun et al review "in the coming weeks". This paper was to inform the new review process, including the protocol. In the November 2023 IAG update Hilda again promised this public consultation process. In the December 2023 updateHilda said that the consultation would occur in early weeks of the new (2024) year. To date, there has been no such consultation.

*******
The harm continues
As we noted last time, while Cochrane continues to obfuscate and delay, people continue to be harmed by their faulty advice.

Since our last update, the Royal Australian College of General Practitioners revised their HANDI guidance on GET for CFS. The College continues to promote GET as a treatment for ME/CFS, citing only the flawed PACE Trial and the Larun et al review as evidence. This is the advice on treatment that Australian GPs are being given:
"Exercise and physical activity considered [sic] a safe intervention with numerous health benefits, including physical and mental health. However, participating in an uncontrolled manner can increase symptoms temporarily."

Paul Glasziou, a Professor of Evidence-Based Medicine is the person in charge of the RACGP's HANDI guidance including this woefully inaccurate advice on GET. He advised on the 2019 Larun et al Cochrane Review and has a long involvement with Cochrane.

*******

Thanks again for your support as we continue to try to stop the harm. Please do keep sharing the link to the petition.

If you would like to talk about this issue you are very welcome to join us at the Science for ME forum.

The Science for ME committee
 
Thank you to the Committee and everyone for persisting in this head butting of the brick wall that is Cochrane.

After all these years of them refusing to objectively evaluate the evidence or respond meaningfully to valid criticisms (apart from that brief spell when the previous Editor in Chief agreed that the Larun et al review should be withdrawn, but then backtracked) we can only conclude that Cochrane exists only to promote the interests of a small number of ‘favoured’ academics with no regard for the very real harm inflicted on patients.

What are the expectations of evidenced based safe health care when the opposite benefits those researchers and clinicians who are the ‘in crowd’?
 
The latest, and briefest, communication from Cochrane:

"Following up on your complaint about the 2019 Cochrane review, "Exercise therapy for Chronic Fatigue Syndrome" by Larun et al., we are still investigating and we will update you as soon as we can.
Kind regards,
Cochrane Complaints"

Also posted on the letters thread.
 
Trish said:
The latest, and briefest, communication from Cochrane:

"Following up on your complaint about the 2019 Cochrane review, "Exercise therapy for Chronic Fatigue Syndrome" by Larun et al., we are still investigating and we will update you as soon as we can.
Kind regards,
Cochrane Complaints"

Also posted on the letters thread.
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More of the same. So we still have no idea which of our complaints they are investigating and which they are not.

This tells us nothing about what the IAG is or isn’t doing, over and above any complaints about Cochrane themselves and worse no indication that they are addressing the ongoing harm resulting from the Larun et al exercise review.

Have they ever acknowledged the existence of the petition and the widespread concern in the patient community world wild even if they believe it misguided?
 
Trish said:
The latest, and briefest, communication from Cochrane:

"Following up on your complaint about the 2019 Cochrane review, "Exercise therapy for Chronic Fatigue Syndrome" by Larun et al., we are still investigating and we will update you as soon as we can.
Kind regards,
Cochrane Complaints"

Also posted on the letters thread.
Click to expand...

It seems this roughly translates as: Go away, we have put your complaint in a long-term holding tray. We will not apologise for the delays thus far, nor will we apologise for those that we anticipate in the future.

PS Generally nothing is expected to leave our LTH tray, so really you should just give up now.
 
Peter Trewhitt said:
Have they ever acknowledged the existence of the petition and the widespread concern in the patient community world wild even if they believe it misguided?
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They have not and I think it would be useful to put it to them plainly. The most common excuse for decades has been that this has been the opinion of a few radicals, and is not representative of most patients. This is false. This petition has the support of most of the patient organizations in the world. And in fact it's the size of opposition in the early days that led them to act so aggressively. Had it gone on, it would have been impossible to oppose. Hence the debunked lies about threats and so on.

At the very least to get them to recognize that this is the majority position. I don't expect them to do anything with it, or even acknowledge it, but putting it in the form of a simple question could at least get them to have to acknowledge a basic truth. It won't matter in the short term, but this trope of a small vocal minority has been around for too long, and has become an impossible position to maintain given that we see the same out of the Long Covid community.

Perhaps with a few choice quotes from authoritative bodies that reject the evidence base, recognizing that there are no treatments and that the CBT/GET paradigm itself is recognize as unfit for purpose. There's the recent analysis from Sweden. A study of tens of thousands of rehabilitation participants from Germany. IQWIG. NICE. NIH. NASEM. The CDC. The psychobehavioral has become the minority position, it's simply holding on because of systemic dysfunction.

Of course there do exist a smaller number of such bodies who have recent quotes saying the opposite, like Australia's horrid HANDI update, partly because of Cochranite Glasziou's involvement, but it cannot be said that this is simply a minority opinion, this is simply false. They are the minority opinion now.

No doubt once we pass the freaking Rubicon they will all try to say that they couldn't know, had no way of knowing, etc. But their own words will reveal their deceitful lies. It's important to put their feet to the fire.
 
If there's a reply to it, I'd really like it if they could expand what they mean by "we are still investigating". What are they investigating? How? Who? What does that mean? Because so far they have pretty much shown that we can't take their word for anything, and they're asking us to do just that.

Because previously they pretty much told us they weren't doing anything. And also told us they were generally vaguely looking into it. Damn this system where a private organization can have this much influence and zero recourse for those affected by their work.
 
We have asked them multiple questions multiple times on things that should be straightforward to answer, and for which there can be no possible justification for refusing to answer.
We don't even get any acknowledgement that we've asked any questions. It's just solid stonewalling.
 
Trish said:
We have asked them multiple questions multiple times on things that should be straightforward to answer, and for which there can be no possible justification for refusing to answer.
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And we've asked them in multiple ways - letters, formal complaints, communication via back channels, face to face conversations, and to the Board generally and individual members, to the Chief Editor, to Hilda, to specific Cochrane office holders including people we know personally. All we get is stonewalling.

rvallee said:
Damn this system where a private organization can have this much influence and zero recourse for those affected by their work.
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It's so wrong and it's causing so much harm. I can't believe that there is no way to appeal to a higher authority, the law, public opinion via the media, something. It's certainly time. Cochrane can't say we have not given them enough time.
 
In Hilda's November 2023 update on the Cochrane website, she said this:

There have been long periods where I have not published progress reports, and that has of course raised widespread concern. After the major pandemic-induced delay in the project, I undertook to report monthly, but there was a further lengthy silence, for the reasons discussed in this current report.

The reasons included the lengthy and confidential process following a detailed complaint that called for the process to be discontinued, and for the review to remain in its current form. The basis for incorporating an IAG into the editorial processes of a Cochrane review was challenged, as well as the need for an update, and the proposed editorial process. The complaint also argued that too many of the people who were authors of the review or members of the IAG, including me, were too biased in favour of criticisms of the current Cochrane review.

Multiple committees within Cochrane’s organisation considered this complaint consecutively, which took around a year. The complaint was not upheld after thorough consideration by the Conflict of Interest Panel, a subgroup of the Editorial Board, and finally Cochrane’s Governing Board.
Click to expand...

So they have a history of taking a year to consider a complaint, and describe it as a confidential process. I think we can guess who might have been involved in making that complaint. What I'd like to know is whether the people/person who made that complaint was kept informed of progress during their year long wait. I rather suspect that Cochrane editors might have been somewhat more deferential to medical professionals lodging complaints than to mere patients. But maybe I'm wrong. We have no way of knowing.
 
It's now over a year since we sent our first letter to Cochrane (28th August 2023), and started our petition (4th September 2023).

It is fast approaching the 5th anniversary of publication of the Larun review (2nd October 2019).

In our most recent letter to Cochrane a month ago, we said:

In our view, it is completely unacceptable for Cochrane, a registered charity whose charitable object is "the protection and preservation of public health..", to deprioritise work affecting the health of millions of very sick people, leaving us vulnerable to harmful treatment for years after promising to update a seriously flawed review.

After all the delays, it seems reasonable to us to expect Cochrane to reprioritise the project immediately, resulting in:
  • substantive answers to the above three sets of questions within three weeks;
  • a thorough review of our complaints and the harms evidence we submitted, completed and reported back to us within the next two months;
  • withdrawal of the 2019 review by 2nd October 2024, five years after publication.
Anything less, and we will be forced to conclude that Cochrane does not take its own policies and charitable object seriously, and to consider our next steps including taking our complaints to other bodies.
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Meanwhile, Hilda remains silent. We still haven't had any of her 'monthly updates' since December 2023.

What now? Any suggestions?
 
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