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

Andy said:
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.
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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.

Why? Why should it stand if it does not meet the quality levels set out by the organization and fails on every single issue mentioned in this blog post? What is the reason why old evidence that does not meet current standards should remain despite massive reports of harm? Especially given how massively more important it has become because of COVID-19. WHY???!!! Cui bono?!
 
Robert 1973 said:
Your comment has now been published on the site:
https://www.evidentlycochrane.net/treatments-can-harm/

It will be interesting to see if Selena responds as she has below the other comment.
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yes she has
Dear Jonathan,

Thanks for your comment.

You may have seen Cochrane’s response to the issues raised with the review you discuss. If not, the full response can be found here: https://www.cochrane.org/news/publication-cochrane-review-exercise-therapy-chronic-fatigue-syndrome

In sum, an amended version of the review was published in October 2019, evaluated by independent peer reviewers. It now places more emphasis on the limited applicability of the evidence to definitions of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) used in the included studies, the long-term effects of exercise on symptoms of fatigue, and acknowledges the limitations of the evidence about harms that may occur.

Nonetheless, Cochrane recognises that review is still based on a research question and a set of methods from 2002, and reflects evidence from studies that applied definitions of ME/CFS from the 1990s. Having heard different views expressed about the evidence base for this condition, Cochrane has acknowledged that the publication of this amended review will not resolve all the ongoing questions and has committed to a full update of the review.

Work has begun with a comprehensive review of the protocol, developed in consultation with an independent advisory group. This group will involve partners from patient-advocacy groups from different parts of the world who will help to embed a patient-focused, contemporary perspective on the review question, methods and findings.

You may also be interested in reading about plans to make Cochrane’s conflict of interest policy more rigorous. This new conflict of interest policy will be implemented this year: https://www.cochrane.org/news/more-rigorous-conflict-interest-policy-coming-cochrane

I hope this answers some of your concerns.

Best wishes,
Selena
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Trish said:
Excellent letter, thank you. It cheers me up immensely to see someone like you without a vested interest, and with relevant professional background, standing up for integrity in situations like this. Can we clone you?
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my thoughts entirely

Jonathan Edwards said:
My comment seems to have disappeared.

I was going to reply:

I realise that you in a difficult position , Selena, but I hope that deep down you realise that I am not that dumb.
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I hope you will. I feel a sense of outrage at the patronising nature of the response "i hope that answers some of your concerns" Ewww! :sick:
I cant stand it when they start to 'educate' people who clearly are very well aware, as if they were entirely new to the field.

Jonathan Edwards said:
I get it if I refresh once I have gone to the URL. Maybe the URL has been updated in some subtle way.
I think I had better not respond. The poor girl should be having a relaxing dinner by now.
Or should I? ;)
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yes. She can read it in the morning.
 
I see that your response is still there.

Thank you so much for your comments on this blog.

I understand that Cochrane are keen to be a partner organisation for the Priority Setting Process, so am sure that some interesting conversations will be had...
 
MEMarge said:
I understand that Cochrane are keen to be a partner organisation for the Priority Setting Process, so am sure that some interesting conversations will be had...
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Specifically the ME/CFS one? How would that work, and what do they think they could bring to the process? Realise you may not have any answers for those questions. :)
 
Yes, the ME PSP.
The Steering Group haven't started the process of signing up partners etc yet, but the JLA Facilitator mentioned at a Seed Group Meeting that Cochrane had expressed an interest in being a partner organisation. I think they are involved in this way in a number of PSPs.
 
MEMarge said:
Yes, the ME PSP.
The Steering Group haven't started the process of signing up partners etc yet, but the JLA Facilitator mentioned at a Seed Group Meeting that Cochrane had expressed an interest in being a partner organisation. I think they are involved in this way in a number of PSPs.
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Well my personal opinion is that they should stay well away, or be convinced to, unless they want to reduce the confidence that the patient population has in the PSP - my assumption is that this possibility wouldn't cross their minds, given that they think that they are all that is good about modern research.
 
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