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

Lucibee

Lucibee

Senior Member (Voting Rights)
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Oooooo...!



https://www.cochrane.org/news/appointment-lead-independent-advisory-group
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Edit: Added for information:
Cochrane Community
Stakeholder engagement in high-profile reviews pilot
https://community.cochrane.org/orga...eholder-engagement-high-profile-reviews-pilot

Review Process announcement
https://community.cochrane.org/orga...h-profile-reviews-pilot/cochrane-exercise-and

Further edit: Hilda Bastian has created a personal 'talk page' to enable communication with her between reports.
https://hbprojecttalk.wordpress.com/2023/11/10/welcome/
S4ME members only thread
 
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S4ME Twitter account said:
Please could you advise when it will be finalised? And have any decisions be made about frequency of meeting, how you will meet (video call presumably), what adjustments will be made to enable patients to take part effectively? How long will this group exist/will the process be?
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Hilda Bastian said:
Taking some time to build. Group itself will determine a fair bit. Will be supportive of member participation in several ways. It won't be the only way people can participate. You'll hear more in coming weeks. It's planned we'll be there till a bit after the review is published.
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Code: 
https://twitter.com/hildabast/status/1228231948700508162
 
This is such good news! Even if the intention with having the independent advisory group was for it to be tokenistic, that would be really difficult with Hilda leading it. And the fact that they appointed Hilda, knowing full well who is and how she’s likely to approach this, also bodes well for their intentions with this process.
 
S4ME Twitter account said:
Sorry, another question. Can you explain how Cochrane defines "patient-advocacy groups", as the article strongly suggests that patient representatives will need to be members of such a group?
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Hilda Bastian said:
Not being rigid. Interested in feedback.
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Code: 
https://twitter.com/hildabast/status/1228254161721942018
 
James Coyne's view of the news.
James Coyne said:
@hildabast leading the effort brings considerable methodological expertise and professional integrity to the effort by the Cochrane to reevaluate its recommendations of exercise therapy for chronic fatigue syndrome/myalgic encephalomyelitis #MEcfs #pwME
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James Coyne said:
Let's get real. @cochrane would have engaged such talent if it did not see a need to restore its integrity and scientific leadership after some bruising. #MEcfs #pwME deserve lots of credit for refusing to be silenced. Bravo for them.
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Code: 
https://twitter.com/CoyneoftheRealm/status/1228275870969757697
 
JohnTheJack said:
I presume your exchange means S4ME will be applying to be recognized as a 'patient advisory group', @Adrian ?
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Sly Saint said:
If so, might an S4ME 'Cochrane committee' be set up rather than just one individual being a representative?
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We haven't made any decisions yet, but I think it's safe to say that we see this as an opportunity that we should be involved in, in one form or another.
 
Simone said:
This is such good news! Even if the intention with having the independent advisory group was for it to be tokenistic, that would be really difficult with Hilda leading it. And the fact that they appointed Hilda, knowing full well who is and how she’s likely to approach this, also bodes well for their intentions with this process.
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Indeed. Hilda does not come from a science or medical doctor background, she has forged a career focusing on patient/consumer interests first!
 
Snow Leopard said:
Indeed. Hilda does not come from a science or medical doctor background, she has forged a career focusing on patient/consumer interests first!
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This is why I don't understand why Hilda didn't push for withdrawal of the review - which is what David Tovey explicitly said he wanted before he left. Having it republished with amendments which water down the enthusiasm but still says that exercise might be an effective treatment for some patients (but sorry we can't tell you which ones) is causing harm to the many people with ME/CFS that are harmed by exercise. It doesn't make sense, apart from in the Cochrane saving face/political sense.
 
Hilda Bastian, I hope you have found your way to reading this forum. If so, welcome, and I'm very pleased you are going to be leading this group. As you will see, if you explore the forum, we have a wide variety of members, including patients, carers, scientists, doctors, supporters... with a wide range of views on everything to do with ME, and a willingness to express those views!

But one thing I think we are all united on is what a disaster for people with ME the whole 'Exercise therapy for ME' has been for 30 years, and continues to be, thanks largely to the power of a small group of doctors and therapists, and some very bad science. Not helped by Cochrane and NICE being so slow to begin to recognise there is a problem.

I hope the current NICE review, and the new approach by Cochrane will emphatically change their conclusions. I wonder, now you have a defined position in the process for the new review, whether your first move could be to ask that while the new review is under way, the current review could be withdrawn?
 
This is very welcome news.

Lots of work ahead but here's to a process that takes facts into account, shuns bias and ideology and actually cares about patient outcomes. The very premise that exercise is a legitimate treatment for ME is absurd and I hope there is some minimal examination into how the prior process went completely wrong to the point of being hostile to patient welfare.
 
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