Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

Andy said:
I know, I completely understand that argument. My problem is that I don't believe that any complaints would be listened to.

A separate line of concern for me is whether we would have anybody in a position to be able take part anyway. There are multiple things to be involved with at the moment, which is good, but we don't seem to have that many people who are both interested and well enough to be involved in them.
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If I have the spoons after NICE, I might apply. We will see. I don't know what the criteria will be.
 
adambeyoncelowe said:
My counter would be that unless you're in the room (or at least the adjacent room), it's very hard to effect change.

At least if you're in the advisory group you can complain loudly, and to the right people, about how you should be more than advisory...
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And it will be on the formal record, so they can't say they were not told, that issues were not raised.
 
Caroline Struthers said:
I haven't steeled myself to watch it yet...am likely to get very cross if I do. Having asked Hilda if I can be involved....a. I don't think I will be one of the lucky ones, and b. I think I would not take part anyway unless the old review is withdrawn. And maybe not even then. The more I think about it, the more stupid it is to have a review of an intervention for a condition for which there is no diagnostic test/biomarker, or full understanding of the cause. Maybe an overview of all interventions would be useful - which would show how few trials (or other studies) include only people with ME, and how many studies rely on subjective outcomes. I think a meta-analysis is totally pointless.
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Got 6 minutes through and giving myself a break to bring my irritation levels down...I am determined to get through it though...
 
Caroline Struthers said:
Got 6 minutes through and giving myself a break to bring my irritation levels down...I am determined to get through it though...
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OK. I've done it. That was painful, but it's done. I will write to Rachel with a few comments... And resubmit my complaint of 2018 (and unhappiness with the response) as there is now an "independent" Cochrane complaints system. See what happens.
 
Since all of us -- PWME as well as health professionals -- have to cope with the situation caused by the pandemic in some way, I was thinking whether S4ME should consult with other patient organizations/ actual stakeholders to ask Hilda Bastian to name and possibly extend the time frame for the announced phase when "Members are being invited and appointed in several waves starting in March 2020"?
 
Yesterday (14/4/20) I submitted a few comments to to the IAG email address (ie, Hilda Bastian) too, largely based on watching the Cochrane presentation about the review update at the CMRC conference. I hope you don't mind me sharing. I gather from the background information that all correspondence to that address will be archived and available after the project has finished anyway.

Hi there
I have a few comments on the pilot.
https://community.cochrane.org/orga...eholder-engagement-high-profile-reviews-pilot

1. What is the definition of high-profile review? This particular review is only high-profile because it’s had a huge amount of criticism. How will future high-profile reviews be defined? In the same way?
2. Why is this “engagement” (relatively passive, implying interest and acceptance rather than any element of control or influence)? I thought Cochrane were interested in stakeholder involvement in reviews – ie. helping prioritise topics/scope, choosing outcomes, control and influence over methods, reporting etc. The advisory group model comes across as hands off.
3. Cochrane is committed to involvement in all reviews. Why is this pilot only focused on “high-profile” reviews?
4. The project is defined as an update of an existing review with a new more inclusive approach. Cochrane has already called the shots by assuming an update of this review is appropriate, rather than a withdrawal/retraction. The current review is out of date, it uses invalid diagnostic criteria and relies on subjective outcomes when there is evidence that lack of blinding significantly inflates effect sizes when subjective measures are used. There is still no mention of this last important issue in the amended review which continues to give credibility to exercise as a treatment option for people with ME because the null results on objective measures are ignored. One of the reasons for withdrawal of a Cochrane review
“Serious error in a Cochrane Review. Following the conclusions of the published review could result in harm to patients or populations of interest (other than known adverse effects);” (https://documentation.cochrane.org/display/EPPR/Withdrawing+published+Cochrane+Reviews)
Clinicians who read the amended review and follow the conclusion that exercise might be helpful for people with ME could (and still do) prescribe it where harm has been documented in numerous studies. The latest survey was done in 2019 https://www.meassociation.org.uk/20...urvey-on-cbt-and-get-in-me-cfs-03-april-2019/
5. It seems the IAG is to provide approval/oversight of a process already started by and ultimately controlled by Cochrane.
6. Why does Karla Soares-Weiser have the ultimate decision making power if the review authors and the IAG disagree? Cochrane appointed you to lead an independent group, but can overrule the group if the authors don’t agree with the advice? I understand Karla could decide in the IAG’s favour, but that would mean the authors could also down tools and we would be back to square one. Why can’t the IAG author the update (or propose a new review title) itself?
All the best
Caroline
 
Look what Cochrane have done for COVID-19. https://covid-19.cochrane.org/. It's a study register....!!! They probably paid an awful lot of money to https://datalanguage.com/ to do it for them, as it includes observational studies, and prognostic/diagnostic modelling studies. Wouldn't it be great to have something like this for ME (and for everything else!). And build and maintain it as a citizen science project - with involvement of patients and the public. It would be good to have a few more categories too, such as outcomes, funding source etc. as discussed previously
 
Sly Saint said:
any time I try to access anything on their site I get
"
An unexpected error has occurred."

am using firefox
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Here's a flavour of the page...there's plenty more - let me know if you want the whole page ;-)

During our time working with Cochrane, we have built a new data platform using domain-driven design techniques which has an explicit information model encoded into a knowledge graph at its core. The model is published here. This is complemented by a loosely coupled, service-based architecture which ensures each business capability in the value stream is cohesively encapsulated. In a follow up article, my colleague Paul Wilton will review how the technical architecture hangs together. The platform design allows services to be very quickly deployed in new choreographies as the business context changes - something which has proved invaluable over the last few weeks
 
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