Caroline Struthers' letter to Cochrane Governing Board

This is my first attempt at creating a thread so Admin feel free to sort out any mistakes I make. I noticed on Anil about ME's Facebook page the following link:

https://healthycontrolblog.wordpres...iew-of-exercise-for-chronic-fatigue-syndrome/

Caroline Struthers says of her letter posted in the above link:

The timing seems particularly interesting given it is my understanding that David Tovey at Cochrane had said previously [October 2018] that the review authors had been asked to take into account complaints and that the issues arround this debate were hoped to be resolved by the end of November. Though how a rewrite and any review process could have been achieved on such a short time scale is beyond me.

 

https://twitter.com/user/status/1068088008946139136

 

- This review has had a catastrophic effect on people with ME who are still being forced to have an ineffective and potentially harmful treatment. Imagine if it was a drug or a vaccine with even a fraction of the evidence of harm, combined with such poor evidence of benefit? People assume that Cochrane is independent, has high scientific standards and is vigilant and robust about dealing with conflict of interest. In my view, and certainly in this case, this assumption is incorrect.

This review should be retracted and Cochrane should issue a full unreserved apology to patients.

 

I find it hard to believe that Tovey could retain any credibility at all if he walked back from his statement to Reuters. Point 12 in Caroline’s complaint. Will try to add the link where this was discussed here.


ETA: https://www.s4me.info/threads/cochrane-me-cfs-get-review-temporarily-withdrawn.6225/page-4
Post #67, #25 and others emphasise the point that it was not patient hysteria as Gerada, Blakemore and others tried to present it that caused Tovey to indicate that he was pulling Larun’s review, but relevant questions that couldn’t be answered.
ETA2: sorry. Did not see link on next post.

 

I thought it might be useful to include a link here to our original thread on the withdrawal, that was not, of the Cochrane GET review, which is now up to 38 pages of posts:

https://www.s4me.info/threads/cochrane-me-cfs-get-review-temporarily-withdrawn.6225/

I personally feel that Caroline's letter covers most of the main problems, though I would have wanted to add the fact that any studies based on the Oxford criteria should automatically have been excluded as we do not know what percentage if any of subjects selected by this definition actually have ME/CFS.

Does anyone know if something is actually now happening at Cochrane in relation to the exercise review or if there is anything we can do to facilitate their consideration of these issues?

[Added - do we yet have any sense about whether Cochrane in handing the criticisms over to the authors to deal with were giving them enough rope to hang themselves with or were employing delaying tactics prior to a whitewash?]

 

So the lady isn’t a pwME but an academic? What inspired her involvement please ?

 

On the Cochrane site there seems to have been no change in the current 'everything is pending' situation.

The undated 'Notes' attached to the exercise review itself about its status under 'Information' (see bottom of page https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003200.pub7/information ), which is very difficult to find, still currently say:

Given this was just announced in October, I remain unconvinced that a meaningful redraft and appropriate peer review is possible in this time scale.

Also in the comments section (see https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003200.pub7/read-comments ), in a response to a comment submitted 18 October 2018 suggesting an ME/CFS review is inappropriately housed in the mental health section, is the statement that:

 

Yeah, it sounds like Cochrane got pressured into agreeing to let the authors smooth a few rough corners and remove a few transparent falsehoods, and then republish things largely unchanged.

Membership of the Cochrane Council here: https://community.cochrane.org/organizational-info/people/governing-board/membership

Looks like Tracey Howe assessed the Cochrane CFS Exercise Therapy review here: https://www.nationalelfservice.net/...xercise-therapy-for-chronic-fatigue-syndrome/

Hopefully this complaint will lead to Cochrane taking their responsibilities more seriously, but I've still got a sense of dread about what's going to happen next.

 

"which we anticipate will be towards the end of November 2018"

Maybe the scale is in milliseconds.

 

Thirty days have September, April, June and November.....

 

True, but I think we must be past the cut-off point for seeing anything on the 29th?

ETA: Ah, a bit slow. I guess that's the point you are making .

 

I guess the retraction happens tomorrow then with a scathing statement from Tovey?

 

Yep. And PACE will be retracted; NICE will withdraw GET and CBT from the current guideline, MS & EC will sincerely apologies to PwME and promise to put things right; the SMC will apologise and start reporting everything honestly; and my backside will fit into trousers with a 30 inch waist!

 

I thought they expected the updated review from Larun by the end of November, and THEN Cochrane will make a decision. And who knows how long that will take... or did I get it wrong?

 

Wording is a bit fluffy, but to me the target date pertains the the decision. If it relates instead to it having been through the editorial process, then it's down to how good they are at making decisions.

 

indeed

 

Cochrane said in October "The review author team have advised us that a resubmission is imminent. A decision on the status of this review will be made once this resubmission has been through editorial process, which we anticipate will be towards the end of November 2018."

This is potentially confusing, it definitely indicates that the resubmitted review will have been through 'the editorial process' by the end of this month, but it is not clear if it was intended that the decision on its status is also included in this deadline. I had interpreted that the decision would be reached by this deadline, though I don't believe any meaningful peer review was possible on this timescale, but accept it could be alternatively interpreted as not placing any time constraint of the decision.

Presumably the Governing Board of Cochrane are in some way currently looking at the issue, given their request to Caroline Struthers earlier this week.

Cochrane were definitely not being ambiguous in stating they would make a decision this year on which Review Group would going forward house any ME/CFS related reviews.

 

Thanks. My interpretation is still alternative two, but that could be a language thing. In any case, I don’t think there’s any reason to expect an announcement before the weekend.

 

Thanks @Peter Trewhitt

I guess we all agree the wording is ambiguous! Hopefully we’ll know more by Christmas, if not sooner. Still not holding my breath...