Science for ME: "Latest update on our open lett…"

Change.orgComplaints to CochraneCochrane has a system whereby complaints, defined as 'an expression of unhappiness about a failure of process or an important misjudgement' are accepted and are responded to. Today, the Science for ME committee sent formal complaints to Cochrane. The document can be found here and covers the following topics: ___________________ Complaint A: A failure of process - no removal of an outdated and incorrect review in the time frame promised. We linked to the Editor-in-Chief's own statement that made clear that the 2019 review was to only stay in place for two years, when it would be replaced by an updated review.___________________ Complaint B: A failure of process - failure to follow normal procedure on a critical comment Cochrane has a facility where comments can be posted about reviews. In August 2020 Michiel Tack notified Cochrane of nine major problems with the Larun et al 2019 review. A Cochrane Senior Editor acknowledged the comment, saying that the review was 'in the process of being updated as a priority'. Lack of progress on the new review leaves the nine problems unaddressed for over 3 years to date, and the flawed review in place unchanged.___________________ Complaint C: A failure of process - failure to take effective action for over two years by the Editor-in-Chief on the stalled new review process. Cochrane set up the process for the new protocol and review in early 2020 with planned publication of the new review in early 2022. We spell out the two years of broken promises on regular updates, public consultation and the lack of response from the IAG email address. Cochrane managers have failed to intervene effectively, or possibly at all, to set the process back on track.___________________ Complaint D: A failure of process - the Editor-in-Chief's failure to address serious concerns from the public, and passing them, inappropriately, to the IAG that has no power to act on our requests, and has a non functioning email address. We inform the complaints department of our letters to Cochrane starting on 28th August 2023, this petition, and the brief and unsatisfactory replies from the office of the Editor-in-Chief. We point out that redirecting our concerns to the IAG is wholly inappropriate, since the IAG is not responding to any correspondence, and has no power over what happens to the 2019 review. We conclude that Dr Soares-Weiser, the Editor-in-Chief's unwillingness to take responsibility is a major failure of process and judgement.___________________ Complaint E: An important policy misjudgement - making the withdrawal of the 2019 review contingent on the publication of a new review. We cannot accept the Editor-in-Chief's judgement that the question of withdrawal of the 2019 review is closed four years after its temporary publication when circumstances have changed. We highlight more up-to-date evidence reviews by NICE and the CDC which do not support the conclusions of the 2019 Cochrane review, and spell out harms from the review remaining. We say that failure of the process to produce the new review should not be used as a delaying tactic to keep the old review in place. We asked Cochrane to consider in whose interests it is to keep the outdated review? Clearly it is not in the interests of science or patients.___________________ We noted that if the IAG resumes its regular updates in the next few weeks, that will not resolve any of our complaints, since the process of completing and taking the new review to publication, if it ever happens, will take many more months, if not years, while the old review remains and continues to harm people with ME/CFS. We will keep you updated about Cochrane's response. THANKS Thank you very much to Trish Davis for her great work putting the complaints document together. Thank you also to the five organisations who have added their names to the now 59 organisations who are supporting the campaign since the last update. You can find the full list here. If an organisation you are associated with isn't listed there, please ask them to add their name - they can contact us at moderators@s4me.info. RME Jönköping - Sweden ONG PEM - Spain ME Support New Zealand LocalME - comprises 52 local support and advocacy groups across the UK as well as outside UK MillionsMissingHolland Thank you also to David Tuller for his coverage of the campaign and to everyone who has signed and shared the petition. The Science for ME committee

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