Below is my correspondence with Cochrane which started with an email to The Cochrane Editor-in-Chief in November 2020. I notified her that following the conclusions of the two reviews Exercise therapy for chronic fatigue syndrome and Cognitive behaviour therapy for chronic fatigue syndrome in adults could lead to patient harm. Therefore, according to Cochrane's own … Continue reading Cochrane editors concluded that reviews saying that Exercise and CBT may be helpful for ME/CFS could not cause harm to patients, despite new draft NICE guidelines saying they should no longer be used (Feb 2021)
On 25 November a new paper was published by David Tuller (University of California, Berkeley), Caroline Struthers (Oxford University) and myself (Michiel Tack, a long-time ME/CFS patient). The paper is about exercise therapy for chronic fatigue syndrome and bias due to lack of blinding. This blog post provides a short summary.
The paper was published in the journal Fatigue: Biomedicine, Health & Behavior and is called: “Bias caused by reliance on patient-reported outcome measures in non-blinded randomized trials: an in-depth look at exercise therapy for chronic fatigue syndrome.“
Our main analysis focuses on a discrepancy between several randomized trial that report graded exercise therapy (GET) for chronic fatigue syndrome (CFS) is effective and multiple surveys by patient organizations that indicate just the opposite.
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On 18 November I wrote a rapid response on the BMJ article "NICE backtracks on graded exercise therapy and CBT in draft revision to CFS guidance" It called for Cochrane to withdraw the reviews, as following the conclusions of both reviews could lead to patient harm. According to the Cochrane policy on reporting serious errors … Continue reading Request to Cochrane to withdraw two reviews on Exercise therapy and CBT for Chronic Fatigue Syndrome (November 2020)
On 2 June 2020 I made a comment on the Cognitive behaviour therapy for chronic fatigue syndrome in adults review asking for it to be withdrawn because it is 12 years out of date but still informs two guidelines. The rules on withdrawal changed in August 2019, so the response to my request was to … Continue reading Second comment on Cochrane’s 2008 CBT for CFS review (3 August 2020)
First Do No Harm, the Independent Medicines and Medical Devices Safety Review focusing on three drug/devices aimed at women (aka the Cumberlege report) was published on 8 July 2020. It has far-reaching and very welcome implications for much needed change in the way patients are treated. Two of the review’s proposals are that there be a … Continue reading It’s not only drugs and medical devices that can cause harm
Below is a link to the email exchange between Cochrane (Tovey/Soares-Weiser), Gordon Guyatt and the Atle Fretheim of the Norwegian Institute of Public Health between 24 May and 17 June.. It was made available via a FOI request. https://drive.google.com/file/d/1n1g1ebr2irHnyRjrzZxCs_ytJKMfgXKN/view?usp=sharing
Comment submitted on the Cognitive behaviour therapy for chronic fatigue syndrome in adults review https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD001027.pub2/full published in 2008. Twelve years out of date, but still used in 2 guidelines Comment submitted 2 June 2020 The Cochrane review Traditional Chinese medicinal herbs for the treatment of idiopathic chronic fatigue and chronic fatigue syndrome (https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD006348.pub3/full) was withdrawn … Continue reading Request to withdraw CBT for CFS review (June 2020)
On 24 September 2018 Hilda Bastian wrote a blog about bias called Scientific Advocacy and Biases of the Ideological and Industry Kinds in response to an upheaval earlier in the month when the Cochrane Collaboration expelled founder member Peter Gøtzsche. I responded to her post by pointing out the non-industry bias should be taken more … Continue reading Commentary on Cochrane’s Exercise review September-October 2018 (via Absolutely Maybe blog)
Despite my request clearly not having anything to do with the review content, I was forced to submit it via Cochrane's feedback system. The lengthy correspondence is posted here Comment submitted via the Cochrane feedback system on 11 January 2020 On 24 October 2019 I wrote to Editor-in-Chief Karla Soares Weiser requesting a link from … Continue reading Comment submitted via Cochrane feedback system on Exercise for CFS Review: 11 January 2020
On Twitter and by email to the Cochrane Independent Advisory Group email address I have suggested an alternative to Cochrane's plan to keep the same review question (Exercise for ME/CFS) without consultation with patients. I have edited this post, as there has now been an announcement of a new Action for ME/James Lind Alliance Priority … Continue reading Alternative proposal for overview of trials of all treatments for ME (May 2020)