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

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​

 

So once again no prominent notice next to very questionable science.
What happened to " first do no harm" ( again)

 

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

 

Maybe I should go to the CMRC this time. It would be useful to hear what a number of people have to say.

 

Then I'll see you there. I'm currently planning to go, unless something changes...

 

I just discovered that I will be in the Alps - maybe next time.

 

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.

 

Is this letter to Karla and her response something I can post publicly?

 

@Science For ME

 

I plan to go to the conference, if I get the opportunity to talk to her then I will look to raise this with her.

 

I think she might be trying to head off a (gentle) confrontation with @Andy

 

https://twitter.com/user/status/1228097250447880194

 

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. '



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.