S4ME letter to Cochrane re: proposed new Exercise for Chronic Fatigue Syndrome review and patient involvement

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Earlier this week we sent this letter to Dr Karla Soares-Weiser, the new editor of Cochrane, who in this article, https://www.cochrane.org/news/publication-cochrane-review-exercise-therapy-chronic-fatigue-syndrome, has promised
to the production of a full update of this Cochrane Review, beginning with a comprehensive review of the protocol, which will be developed in consultation with an independent advisory group that we intend to convene. This group will involve partners from patient-advocacy groups from different parts of the world who will help us to embed a patient-focused, contemporary perspective on the review question, methods and findings.”
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Dear Dr Soares-Weiser,

re: Publication of Cochrane Review: ‘Exercise therapy for chronic fatigue syndrome’

We are an international on-line forum-based organisation called ''Science for ME'' with an international membership of over 2000 patients, carers, supporters and scientists with a focus on discussing and reviewing scientific research on ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome).

We have followed closely the attempts to highlight the flaws in the review 'Exercise therapy for Chronic Fatigue Syndrome', mainly by patients, some of whom are members of our forum, and acknowledge that some progress has been made to address some of those issues, although we still have serious concerns.

We have two requests.

First, we are concerned that until a new review is completed, the current version will continue to inform health care decisions, with a high potential of seriously harming patients with ME. Given the high impact of Cochrane reviews internationally, we ask that you place your announcement prominently alongside the current review so that readers are aware that Cochrane has decided a completely new approach is necessary.

Second, we are pleased to read that you intend to involve patient groups from around the world in the new review. Please could you add Science for ME to your contact list of patient organisations to be kept informed of progress, and with a view to possible involvement.

We look forward to your response.

Yours sincerely,​


and we have subsequently received the following response

Dear S4ME,


Thank you for your email. We are starting planning the steps of the update of the review and will take your requests into consideration.


With best wishes, Karla



Karla Soares-Weiser (MD, MSc, PhD)

Editor in Chief, Cochrane Library

Editorial & Methods Department | Cochrane Central Executive​
 
Science For ME said:
Earlier this week we sent this letter to Dr Karla Soares-Weiser, the new editor of Cochrane, who in this article, https://www.cochrane.org/news/publication-cochrane-review-exercise-therapy-chronic-fatigue-syndrome, has promised


Dear Dr Soares-Weiser,

re: Publication of Cochrane Review: ‘Exercise therapy for chronic fatigue syndrome’

We are an international on-line forum-based organisation called ''Science for ME'' with an international membership of over 2000 patients, carers, supporters and scientists with a focus on discussing and reviewing scientific research on ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome).

We have followed closely the attempts to highlight the flaws in the review 'Exercise therapy for Chronic Fatigue Syndrome', mainly by patients, some of whom are members of our forum, and acknowledge that some progress has been made to address some of those issues, although we still have serious concerns.

We have two requests.

First, we are concerned that until a new review is completed, the current version will continue to inform health care decisions, with a high potential of seriously harming patients with ME. Given the high impact of Cochrane reviews internationally, we ask that you place your announcement prominently alongside the current review so that readers are aware that Cochrane has decided a completely new approach is necessary.

Second, we are pleased to read that you intend to involve patient groups from around the world in the new review. Please could you add Science for ME to your contact list of patient organisations to be kept informed of progress, and with a view to possible involvement.

We look forward to your response.

Yours sincerely,​


and we have subsequently received the following response

Dear S4ME,


Thank you for your email. We are starting planning the steps of the update of the review and will take your requests into consideration.


With best wishes, Karla



Karla Soares-Weiser (MD, MSc, PhD)

Editor in Chief, Cochrane Library

Editorial & Methods Department | Cochrane Central Executive​
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So once again no prominent notice next to very questionable science.
What happened to " first do no harm" ( again)
 
That is a crap reply which is probably being sent out to anyone who contacts them. The point being made about the notice isn’t about the future review it’s about the current review therefore it has not been addressed. Will S4ME do a follow up asking for a substantive response on the first point?
 
MSEsperanza said:
It seems that Karla Soares Weiser will speak at the UK CFS/ME Research Collaborative (CMRC) Conference in March:

https://www.eventbee.com/v/uk-cfsme...N5k102Sf_zzYEsf9n1TANoU_sJ4_wsavZHo8#/tickets
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On the same day as Alain Moreau, Chris Ponting and Sadie Whittaker. Should be quite a change of pace from the usual drivel and tantrums she was exposed to on the BPS side, with much less politics and actual science being discussed, rather than how to massage garbage science to appear credible. This would indeed qualify as some engagement, though not quite there with the patient population. It's little but in the circumstances, this is welcome. I hope she learns much from this.

Looking at the topics and speakers, this is not the CMRC of a few years ago. BACME isn't even listed and appears to boycott, as usual they never put themselves in a position to discuss outside of a friendly audience. Great progress there, though it still has to translate into actual funding. Curious about "Versus arthritis", a general interest in fatigue? There is a talk on "chronic fatigue in the general population" by Prof Frances Williams who appears to be a rheumatologist so that's probably that.
 
It seems the review has been republished with the note attached.
https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003200.pub8/information

6 February 2020

Amended

Addition of new published note from the editorial team at Cochrane Editorial and Methods Department, 'A statement from the Editor in Chief about this review and its planned update is available here: www.cochrane.org/news/publication‐cochrane‐review‐exercise‐therapy‐chronic‐fatigue‐syndrome.’
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Also discussed on this thread:
https://www.s4me.info/threads/cochr...ersion-october-2019.11564/page-18#post-236966
 
We would like to thank Peter White and Paul Glasziou for advice and additional information provided. We would also like to thank Kathy Fulcher, Richard Bentall, Alison Wearden, Karen Wallman and Rona Moss‐Morris for providing additional information from studies in which they were involved, as well as the Cochrane Common Mental Disorders' editorial base for providing support and advice, and Sarah Dawson for conducting the searches. In addition, we would like to thank Jane Dennis, Ingvild Kirkehei, Hugh McGuire and Melissa Edmonds for their valuable contributions, and Elisabet Hafstad for assistance with the search.
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Plenty of thanks to those who helped create this pile of dung, but no thanks – or even acknowledgement – to those unpaid and sick patients who doggedly, carefully, and correctly identified the serious flaws in it, via the proper formal processes.
 
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Thank you everyone who have pursued the requests the letter asked for.

So the link now is added at a place a bit less easier to ignore, and it says:

'A statement from the Editor in Chief about this review and its planned update is available here: www.cochrane.org/news/publication-cochrane-review-exercise-therapy-chronic-fatigue-syndrome. '

Cochrane_review_amendment_20200521.jpg

https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003200.pub8/full

Not able to comment on this at the moment.

Also don't want to distract from forum members' work on contributing to ME advocacy and better science for ME in all the fields where this is most urgently needed, be it in the general field of 'MUS' trial methodology or the specific involvement with the Cochrane IAG or the NICE guideline revision or the quality of biomedical research etc.

So for now, just this question: Did S4ME receive any further reply from Cochrane or the IAG to our letter's requests, any reply apart from Karla's one line posted above -- any notification about the IAG or the link added to the review?

Edited to mention advocacy work and the work for the NICE committee.
 
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