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

If I have the spoons after NICE, I might apply. We will see. I don't know what the criteria will be.

 

Exactly. Engaging is hard work, but also, sometimes, you have to play the (long) game if you want to win.

 

Being positive about Cochrane probably...you may have to take an oath of allegiance ;-)

 

Got 6 minutes through and giving myself a break to bring my irritation levels down...I am determined to get through it though...

 

Ha! This may be true. I've broken a few rules in my time, though.

 

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.

 

Old article from 2015 but might have information of use
US Neuroscientist Says Exercise is a Noxious Stimulus That Worsens Symptoms of ME/CFS
https://theargusreport.com/us-neuro...ious-stimulus-that-worsens-symptoms-of-mecfs/

 

Not sure whether this has been posted yet:

Stakeholder engagement in high-profile reviews pilot

https://community.cochrane.org/orga...eholder-engagement-high-profile-reviews-pilot

FAQs last updated 10th March 2020

Still doesn't seem to me to be a "fresh approach".

 

https://www.s4me.info/threads/indep...led-by-hilda-bastian.13645/page-6#post-242705

 

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"?

 

Code:

https://twitter.com/hildabast/status/1248128723678679049

https://twitter.com/user/status/1248128723678679049

 

fwiw I've just submitted a comment to the IAG. I hope it helps.

 

That's great @Lucibee thank you.

 

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

 

Thanks for your efforts @Caroline Struthers , you certainly cover a number of points that concern me about this process.

 

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

 

This is jam packed full of tech jargon...https://datalanguage.com/blog/covid-19-rapid-response-technical-delivery-at-cochrane

 

Both links work for me but I'm using Chrome on a Mac. Just tried on Firefox and both links still work for me.

 

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