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Read our latest petition update, where Cochrane refuse to withdraw their outdated and harmful review of 'Exercise therapy for CFS', and refers all other questions to their 'independent advisory group' who have not reported or answered emails for over two years.
We now have over 9,000 individuals, and 54 patient organisations, supporting our petition and open letter.
Change.org22 Oct: The office of the Editor-in-Chief repliesIn our letter of 8th October addressed to the Chief Executive of Cochrane, we asked for "clear answers to the following questions:
1. Will the 2019 Larun review that Dr Soares-Weiser acknowledged was flawed four years ago be removed immediately?
2. If not, why not?
3. Who has the authority and responsibility to remove a Cochrane review that has been shown to be inaccurate and harmful?
4. Do you understand the harm that the ongoing hosting of the 2019 Larun review is causing people with ME/CFS and Long Covid?
5. The planned delivery time of the new review was early 2022. What is the new planned delivery time?
6. We understand Rachel Marshall left Cochrane last year. Who is her replacement as the 'Exercise therapy for ME/CFS' review update project manager?"___________
Science for ME has received the following reply:
"Thank you for your email.
The 2019 version of the review has undergone thorough editorial scrutiny and the matter is closed.
For any new concerns about this topic, the process is to pass them to the Independent Advisory Group to inform their work. Please could you confirm if you are happy for us to share this correspondence with them so they can take your requests into consideration?
The Independent Advisory Group is seeking to address questions beyond the scope of the 2019 review, and we hope to share a progress update from them in the coming weeks.
Cochrane does not have the resource to hire project managers for individual reviews. A former member of staff helped to set up the Independent Advisory Group, which is now self-managing.
Kind regards,Office of the Editor in Chief"
****Clearly, as far as the Editor in Chief (Dr Karla Soares-Weiser) is concerned, the 2019 review will not be withdrawn until there is a new one to replace it, however long that takes. This is inconsistent with her statement at the time the 2019 review was published that it was already outdated and would be replaced in two years. Four years on, and it's still there causing harm.
Since 2019, both UK NICE and US CDC have looked at the evidence and concluded that exercise therapy should not be used as treatment for ME/CFS. Hundreds of you have told Cochrane in your comments on this petition that you have been significantly harmed by exercise therapy.
We and other patient organisations, over 50 now, have repeatedly told Cochrane that the treatment does not work and causes harm. We can only conclude that decision makers at Cochrane are more concerned about upsetting the review authors and their friends than the well-being of millions of people and the reputation of their organisation.
The next part of the reply tells us to talk to the new review's Independent Advisory Group (IAG). They even offer to forward our letter to them, having failed to notice that we have copied the IAG in to all our letters.
There are two problems with this.
First, the IAG has not been communicating for two years. We have sent the IAG a number of emails over the last month, and still there has been no reply. We have no idea if the IAG is still functioning, or if Hilda Bastian is still leading it.
Second, the IAG is not Cochrane, it's just an advisory group, and it has no control over what is done with the 2019 review. Even if the IAG was communicating with the ME/CFS community, they can't usefully discuss the removal of the 2019 review.
Cochrane seems to be distancing itself from the new review process, withdrawing editorial support, and passing responsibility for this situation to an advisory group with no teeth that appears not to be able to function as intended.
****Having observed how many years it took for Cochrane to commit to change on this issue, and then how it has delivered nothing of substance for four years, we have no confidence that an acceptable replacement review will be produced. The flawed 2019 review continues to influence clinical practice, and that must stop.
Petition signatures and comments and organisations supporting the campaign help to demonstrate how strongly the ME/CFS community feels about ensuring medical professionals understand that exercise therapies don't fix ME/CFS. We will keep working on getting the review removed.
Since the last update, five more organisations have brought the total number of organisations supporting the campaign to 54. Thank you very much to:
Norwegian ME-association Oslo og AkershusRME Skåne (Sweden)RME Väst (Sweden)#MillionsMissing SwedenRME Stockholm (Sweden)
To see the whole list of organisations, click here.