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

Two days isn’t long to receive a response especially from organisations that are run by pwME

 

Thank you Solve ME/CFS! Made my day.

 

We have achieved unity!

 

Some posts have been moved to:
Caroline Struthers' correspondence and blog on the Cochrane Review: 'Exercise therapy for chronic fatigue syndrome, 2017 and 2019, Larun et al.

 

Hi all

we’ve had some new members joining the forum in the last few weeks so I thought I would flag up the petition calling on Cochrane to withdraw their harmful 2019 review of exercise for CFS

the petition is now on 11271 signatures

more info in the original post of this thread

https://www.s4me.info/threads/petition-s4me-2023-cochrane-withdraw-the-harmful-2019-exercise-therapy-for-cfs-review.35109/

 

We haven't given up on this campaign.

The forum committee sent another letter today to Cochrane Complaints.
It's posted here:
https://www.s4me.info/threads/s4me-...rcise-therapy-review.34973/page-2#post-547317

To summarise, we pointed out that it's now 11 months since we first wrote to them, and we have had no answers or signs of progress.
We asked them 3 sets of questions:

Progress on the new review of exercise therapy for ME/CFS
Question 1
a) Is completion of the new review a current priority for Cochrane?
b) Does the stalled new review process effectively block any other group from conducting a review of exercise therapy for ME/CFS under the Cochrane name?
______________

Science for ME committee complaints

Question 2
a) Which of the five formal complaints submitted by the S4ME committee on 30th October 2023 are being considered by the Cochrane complaints procedure?
b) When are we likely to get a response?
c) For those complaints rejected from consideration, please can you provide reasons.
____________________

Evidence supporting withdrawal of the 2019 review on the grounds of harms.

Question 3
Please can you confirm that the 2019 review is being considered for withdrawal on the grounds that "Following the conclusions of the published review could result in harm to patients or populations of interest (other than known adverse effects)"?
________________

We also sent them links to information about the inquest into the death of Maeve Boothby O'Neill and Jonathan Edwards article spelling out the problems and the need for better protocols to help clinicians to avoid what happened to Maeve.
This section concluded:
We are concerned, and are sure you will be too, that the Cochrane Larun 2019 review may be contributing to the misconceptions by clinicians treating these very severe cases about the nature and appropriate treatment of ME/CFS. The lack of any recognition of harms by Larun et al, is not helping and may be actively continuing to cause harm.
_________________

The letter concludes:

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.

________________________

 

Thanks, Binkie4. I think you may be reading too much into Cochrane's reply. It came only an hour or so after our email being sent, and is just a standard acknowledgement presumably from an office person. We have yet to see whether we get substantive responses to anything.