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

9,768 signatures at time of posting.

https://www.change.org/p/cochrane-withdraw-the-harmful-2019-exercise-therapy-for-cfs-review

 

The committee received the following email from Cochrane on Tuesday 19th December, posted on the open letter thread, and also here for comments:
______________

Dear Trish Davis and the Committee of Science for ME international forum,


Thank you for your correspondence, which has been referred to me.


We are committed to taking complaints seriously, and to following Cochrane's established processes and procedures. [1] For example, as we note on our website, [2] previous complaints on some of the issues you have raised were also made in 2020. Those were investigated by a sub-group of Cochrane’s Editorial Board and a Cochrane Coordinating Editor, who agreed that the published review did not warrant withdrawal based on those complaints.

Our procedures can involve referring complaints within the organization, for example, to our conflicts of interest panel. This depends on the matters raised within the complaints, not on who made the complaint.

We regret the lengthy delays to this project. As indicated in Hilda Bastian’s November report, [3] the next steps for this review are currently in planning. When there is a timetable and further details, this will be included in public updates. As also reported, since the review process will take some time, Cochrane will be working with the Independent Advisory Group on a revised editorial note with the aim of reducing the chances of misinterpreting the current review.

The Cochrane Governing Board is informed about developments relating to this review. I recognize that this email does not address the concerns and complaints you have sent in previous correspondence. However, the other matters you have raised are under review, and we will get back to you in due course.


Kind regards,

Jordi Pardo Pardo

Interim Chair. Cochrane Governing Board.
________________

 

If the Editor in Chief had enforced the advice of Gordon Guyatt to emphasise in the text of the review that the evidence indicated that exercise had "no important effect", then at least the review would be less likely to be misinterpreted. This is the part of my complaint I am still actively pursuing, which I consider as publication misconduct

However, my complaint was originally headlined around the two ratings errors rather than her ignoring Guyatt's advice on changing the text. I don't think I've made this shift in my emphasis clear enough so they still fob me off saying they have investigated and there are no serious errors in the review.

To "reduce the chance of misinterpreting the current review" it would be better to edit the review and add that caveat of "no important effect" to the plain language summary and/or the discussion, as advised by Guyatt, rather than add an editorial note. But I guess the authors would refuse to allow any further editing of the review itself. If that were the case, Cochrane would surely be within their rights to withdraw the review for "author insubordination" or whatever the technical term is. Why on earth do these authors have the power over Cochrane's Editor in Chief and also, it seems, the Trustees?

 

Yes, we covered it in the December 16 newsletter. We will also post it on social media at the beginning of the year.

Don't know whether iframe is possible here, but if so, you can read it below. Otherwise, with this link: https://a2ws3.r.sp1-brevo.net/mk/mr/sh/OycXxko2a8zXNWXitvBvW9TR/m9j4vRiOEKoc#GET

Code:

<iframe src="https://a2ws3.r.sp1-brevo.net/mk/mr/sh/OycXxko2a8zXNWXitvBvW9TR/m9j4vRiOEKoc#GET" width="100%" height="300" style="border:1px solid black;">
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9,821 signatures at time of posting.

https://www.change.org/p/cochrane-withdraw-the-harmful-2019-exercise-therapy-for-cfs-review

 

Have seen one or two family members. Hope they are interested. Fingers crossed.

 

Merck Manual: Chronic Fatigue Syndrome (Professional version)

By Stephen Gluckman , MD, Perelman School of Medicine at The University of Pennsylvania
Reviewed/Revised Jul 2023

Under "Treatment of Chronic Fatigue Syndrome"

• Acknowledgment of patient's symptoms
  
  
• Sometimes cognitive-behavioral therapy
  
  
• Sometimes graded exercise, limited to avoid a setback
  
  
• Medications for depression, sleep, or pain if indicated

To provide effective care to patients with CFS, physicians must acknowledge and accept the validity of patients' symptoms. Whatever the underlying cause, these patients are not malingerers but are suffering and strongly desire a return to their previous state of health. For successful management patients need to accept and accommodate their disability, focusing on what they can still do instead of lamenting what they cannot do.

Cognitive-behavioral therapy and a graded exercise program have been helpful in some studies but not in others (1, 2). They should be considered for patients who are willing to try them and have access to the appropriate services. Depression is common and expected in any patient with a disability. This should be treated with antidepressants and/or psychiatric referral. Sleep disturbances should be aggressively managed with relaxation techniques and improved sleep hygiene (see table fibromyalgia) can be treated using a number of medications such as pregabalin, duloxetine, amitriptyline, or gabapentin. Physical therapy is also often helpful. Treatment for orthostatic hypotension may also be helpful.

Unproven or disproven treatments, such as antivirals, immunosuppressants, elimination diets, and amalgam extractions, should be avoided.

Treatment references

• 1. Vink M, Vink-Niese A: Graded exercise therapy for myalgic encephalomyelitis/chronic fatigue syndrome is not effective and unsafe. Re-analysis of a Cochrane review. Health Psychol Open 5(2):2055102918805187, 2018. doi:10.1177/2055102918805187
  
  
• 2. Larun L, Brurberg KG, et al: Exercise therapy for chronic fatigue syndrome. Cochrane Database of Systematic Reviews Issue 10. Art. No.: CD003200, 2019. doi: 10.1002/14651858.CD003200.pub8

This post has been copled and discussion moved to MSD Manual (US): Chronic fatigue syndrome - updated Apr 2020 and Sept. 2021

 

9844 signatures at time of posting. Rising slowly.

https://www.change.org/p/cochrane-withdraw-the-harmful-2019-exercise-therapy-for-cfs-review

 

9,863 signatures at time of posting.

https://www.change.org/p/cochrane-withdraw-the-harmful-2019-exercise-therapy-for-cfs-review

 

Thank you for all the hard work people are putting into this issue.

 

Don't forget the kitchen sink!

And I mean really this is literally all the issues raised from the start. They haven't addressed or delivered a single thing, they just let them pile up, even the complaints about throwing out the complaints about them just letting it all pile up.

Cochrane's approach to so-called evidence-based medicine embodies the worst aspects of a corrupt planned economy bureaucracy and crass capitalism working on the equivalent of snake oil NFTs. It's just excessive in all aspects, and none of the excesses are in the right direction. Truly impressive stuff, they are giving a masterclass that will be studied for centuries as a model of failure.

 

This is my latest "we're not going to do anything" letter from COPE. I plan to challenge them on stating that the Trustees were "independent" when they made the decision not to investigate my allegation of publication misconduct. I have asked Cochrane how to make a complaint about the Trustees (who spookily both stood down at the same time, although Tracey Howe's term of office had not yet expired). The interim chair (Jordi Pardo Pardo) is a nice person. I have tried in the past to explain to him how Cochrane has messed up on this issue, but he is a true Cochrane belieber, so not sure he will be more helpful than any of his predecessors.

Dear Ms Struthers,

I am writing to you regarding the concerns you raised to COPE’s attention in relation to the Cochrane’ handling of a complaint you raised about the editor of Cochrane Database of Systematic Reviews.

As you are aware, we contacted the publisher for comments on your concerns about the editor's handling of post-publication concerns about two systematic reviews published in the journal. We received information from the publisher on their process to review your complaint, we thank the publisher for their response to our requests for comments on this matter.
The publisher indicated that Cochrane has a documented process to handle complaints, and they followed their process for handling your complaint. The complaint was raised to the two Chairs of the Governing Board, who are independent from the editor of the journal. They completed an initial assessment of the complaint and reached a decision not to pursue a formal review as they considered that the complaint overlapped in scope with your earlier complaint previously reviewed by Cochrane.

COPE’s review is strictly focused on procedural matters and based on the information that we have received, we consider that the publisher followed an adequate process to handle your complaint. The COPE Core Practices - which replaced the COPE Code of Conduct several years ago - outline that journals should have a documented process to handle complaints. Based on the information we have received, Cochrane has a documented and public summary of their process for complaints and followed this in relation to the matter you raised. The determination on whether to pursue a full review of the complaint falls within the remit of decision making and beyond the scope of our review. We have no advice for the publisher beyond the steps they have already taken and thus, we are closing our review of this matter.

Per our framework, we have developed a summary report of the case which we are attaching to this email.

Thank you for raising this matter to the attention of COPE.

With best wishes,

 

Do you have his JPP's email address? I may try writing directly to him as he has always been very reasonable when I've contacted him before about this...in around 2018!

 

Well that sure is one way to handle complaints. First: ignore a complaint. Then when a further complaint is made about the initial complaint having been ignored, say that it's outside of scope because it was already handled.

Cochrane sure does have a documented and public summary of their process for complaints, the problem is that they don't actually apply it. But I guess that means that Cochrane's trustees were chosen well in that they are trusted to shut their mouths about such pesky issues as, uh, doing whatever the hell they want.

Showing once more how rules, processes, even laws, are just words and without enforcement, they matter exactly as much as sacred oaths and pinky promises.