Cochrane Review: 'Exercise therapy for chronic fatigue syndrome' 2017, Larun et al. - Recent developments, 2018-19

[Caroline Struthers]

I think your information is out of date, @Caroline Struthers. The James Lind Alliance is still going strong, and the ME/CFS PSP is under way.
https://www.s4me.info/threads/uk-priority-setting-partnership-for-me-cfs.13973/page-3#post-269576

Yes, the Alliance is going, running the PSPs, and is now under the NiHR organisation rather than under the James Lind Initiative. It's the Initiative which is no longer going. And the James Lind Library which was also part of the Initiative, is still going with Iain at the helm still. It's very confusing!

 

[Trish]

Thanks, so I was wrong, sorry. I hadn't realised the Alliance and the Initiative were different.

 

[MSEsperanza]

Link to the blog that MEMarge refers to above
https://www.evidentlycochrane.net/treatments-can-harm/

Comments can be left, if anybody is feeling so inclined.

Great comment by Dr Edwards. Very disappointing answer from Cochrane, basically the usual: we recognize that this evidence meets none of our standards and it may change some time in the future but in the interval this misleading advice that does not meet any of our standards shall stand.

Very well said, both Jo and rvallee.

Edit: Another comment has now been published.

 

[Jonathan Edwards]

I posted a comment on the blog author's response to Jonathan Edwards before the weekend. Has not showed up until now (my comment). Perhaps wasn't approved or the blog author is on holiday.

Or the blog author cannot face opening up the comments box to do the approval!

 

[Caroline Struthers]

I have had a rapid response to an editorial about the Cumberledge review in the BMJ posted https://www.bmj.com/content/370/bmj.m3099/rr-2. Any resemblance of my hypothetical scenarios to actual events may not be entirely coincidental. ;-) The only way to get things through the BMJ editors is not to mention Cochrane or PACE explicitly.

 

[Sly Saint]

I have had a rapid response to an editorial about the Cumberledge review in the BMJ posted https://www.bmj.com/content/370/bmj.m3099/rr-2. Any resemblance of my hypothetical scenarios to actual events may not be entirely coincidental. ;-) The only way to get things through the BMJ editors is not to mention Cochrane or PACE explicitly.

excellent

 

[ME/CFS Skeptic]

I have submitted my comments to the Cochrane review more than 2 months ago, but due to technical difficulties with Cochrane they have only now been published. They can be viewed here: https://www.cochranelibrary.com/cds....pub8/detailed-comment/en?messageId=266353165

There's also a short (but rather contentless) response from the editorial team at the Cochrane Editorial and Methods Department: https://www.cochranelibrary.com/cds....pub8/detailed-comment/en?messageId=266353280

 

[Trish]

Really excellent and very worthwhile @Michiel Tack. Thank you for all the work you have done on this.

 

[rvallee]

I have submitted my comments to the Cochrane review more than 2 months ago, but due to technical difficulties with Cochrane they have only now been published. They can be viewed here: https://www.cochranelibrary.com/cds....pub8/detailed-comment/en?messageId=266353165

There's also a short (but rather contentless) response from the editorial team at the Cochrane Editorial and Methods Department: https://www.cochranelibrary.com/cds....pub8/detailed-comment/en?messageId=266353280

Devastating. Excellent.

BS reply from Cochrane, as usual. Did not even bother addressing anything. Patient safety is clearly not a concern for Cochrane. Not that it's not a priority, high on the list of concerns, it is simply not a concern at all.

I will post it elsewhere but think this is relevant to the topic: Exercise and COVID-19 can be a dangerous combination, new evidence shows. This article suggests that exercise should be avoided for 2 weeks but offers no clear reason why so short, and actually advises graded exercise afterward, no doubt in part informed by current practices such as offered in the Cochrane reviews, including this one.

 

[NelliePledge]

Brilliant work @Michiel Tack you totally shredded their shoddy workmanship.

 

[Sean]

Outstanding content and clarity, @Michiel Tack.

Thank you.

 

[Ravn]

I have submitted my comments to the Cochrane review more than 2 months ago, but due to technical difficulties with Cochrane they have only now been published. They can be viewed here: https://www.cochranelibrary.com/cds....pub8/detailed-comment/en?messageId=266353165

Impressive work @Michiel Tack

There's also a short (but rather contentless) response from the editorial team at the Cochrane Editorial and Methods Department: https://www.cochranelibrary.com/cds....pub8/detailed-comment/en?messageId=266353280

Decidedly unimpressive response from Cochrane

 

[Caroline Struthers]

Devastating. Excellent.

BS reply from Cochrane, as usual. Did not even bother addressing anything. Patient safety is clearly not a concern for Cochrane. Not that it's not a priority, high on the list of concerns, it is simply not a concern at all.

I will post it elsewhere but think this is relevant to the topic: Exercise and COVID-19 can be a dangerous combination, new evidence shows. This article suggests that exercise should be avoided for 2 weeks but offers no clear reason why so short, and actually advises graded exercise afterward, no doubt in part informed by current practices such as offered in the Cochrane reviews, including this one.

Amazing work from @Michiel Tack as ever. I am considering writing to Cochrane to question why David Tovey decided to withdraw the review whilst it was being updated, was persuaded by the authors not to, and then the new Editor in Chief allowed publication of the amendment in October 2019 when they had promised to publish it in I think August or maybe earlier. With spooky timing, and uncustomary speed for Cochrane, in August, Cochrane changed its review withdrawal policy so any further criticism after the amendment had been published could not be used as a reason to withdraw it. In fact, now even reviews which are over ten years out of date and will not be updated will stay on the Cochrane Library forever. Maybe I can find out a bit more about the process which led to the sudden change of policy, as Cochrane prides itself on transparency in everything.

 

[Trish]

Some posts have been copied or moved from this and other threads to a new thread to keep the topic in one place.
Caroline Struthers' correspondence and blog on the Cochrane Review: 'Exercise therapy for chronic fatigue syndrome, 2017 and 2019, Larun et al.