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

Hutan said:
I note that the Austrian WE&ME Foundation have signed, which is great.
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Yann04 said:
I tried 2 days ago to ask them via twitter but also recieved no response. It is hard to know if it is not being seen by the people who can issue such a decision or that the response is no.
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If WE&ME is on Twitter/X, I wonder if they'd be willing to draw the attention of Österreichische Gesellschaft Für ME/CFS to the petition? They might even know someone from that group personally.

ETA: Sorry, I'm not on Twitter myself, or I'd do it!
 
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.

________________________
 
I know we wouldn't get any answers, Cochrane would just defer to Bastian and Bastian would simply tell us nothing, but I'd really like to know what work has actually been done so far, in the 4.5 years this has been "happening".

Because as far as I can tell, it's none. People were named, people we heard nothing from or what they did, or are doing. So far, whether there is an "unplanned hiatus" appears no different than when there isn't. I'd like a summary of that work. I know we won't get it because in all likelihood there hasn't been any. We only have their word for it, and it's worthless.

Looking forward to the next update from the IAG, which will tell us all about a future possible planned update that may be in progress of some sort at some future undetermined time.

But as far as I know, there are no next steps we can take in terms of complaints? The system that fails cannot protect, it's doing its purpose, which is to fail in this case. They're a private charity. They suck at their role, but there are no enforceable rules against that. Or rather, they wouldn't be enforced in our case.
 
I am hugely pleased to see Cochrane's reply of 7th Aug to Trish and Andy's letter of 7th August referencing Maeve's death. Thank you to Trish for your persistent and unswerving commitment to following up this issue with Cochrane and to Andy for his help in pushing it over the line to get Cochrane to investigate further.

I am stunned really. Maeve's death, or rather the publicity engendered by the inquest, seems to have had wide ranging effects. I'll leave it to others to provide more background analysis but well done to Science 4 ME.
 
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Science For ME said:
Reply from Cochrane, 7th August 2024:

Dear Andy and Trish,

Thank you for completing the webform. We note that this complaint is about the 2019 Cochrane review, "Exercise therapy for Chronic Fatigue Syndrome" by Larun et al., and have assigned your complaint to the most relevant member of Cochrane central staff to take forward.

This staff member will assess your complaint and confirm what level of investigation will take place. We will aim to make this decision within three weeks. If this is not possible, an interim response will be given. Please be aware, if the complaint is investigated, we will let you know this but you will not necessarily be kept regularly updated until there is a final decision.

If you have any questions in the meantime, please do not hesitate to reach out.

Kind regards,
Cochrane Complaints
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Binkie4 said:
I am hugely pleased to see Cochrane's reply of 7th Aug to Trish and Andy's letter of 7th August referencing Maeve's death.
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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.
 
Trish said:
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.
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I had just slightly amended my post to explain that Cochrane was committing to investigating further. I still think this a big achievement after all the stonewalling, refusal to engage etc and you are to be congratulated for persisting.
I think something is changing and hope that somebody more informed than I can help elucidate.
 
Trish said:
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.

________________________
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Excellent, thank you all.
 
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