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

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Oooooo...!

https://twitter.com/user/status/1228097250447880194


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

 

Code:

https://twitter.com/hildabast/status/1228231948700508162

https://twitter.com/user/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.

 

Code:

https://twitter.com/hildabast/status/1228254161721942018

https://twitter.com/user/status/1228254161721942018

 

James Coyne's view of the news.

Code:

https://twitter.com/CoyneoftheRealm/status/1228275870969757697

https://twitter.com/user/status/1228275870969757697

 

Maybe it was a good ploy to sit on the fence a while back. Let's hope she slips down the right side!

 

I didn't recognise the name Hilda Bastian but reading her blog I think I like her

https://blogs.plos.org/absolutely-m...-the-me-cfs-exercise-dispute-matters-so-much/

https://blogs.plos.org/absolutely-m...n-of-the-cochrane-review-on-exercise-and-cfs/

 

If so, might an S4ME 'Cochrane committee' be set up rather than just one individual being a representative?

 

https://www.s4me.info/threads/consu...so-much-plos-blog-post-by-hilda-bastian.8083/

https://www.s4me.info/threads/cochr...version-october-2019.11564/page-3#post-205817

 

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.

 

always the danger of skelfs

 

Indeed. Hilda does not come from a science or medical doctor background, she has forged a career focusing on patient/consumer interests first!

 

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 is a scientist

Twitter says:-
Scientist, writer, cartoonist. Blogs Absolutely Maybe (@PLOSBlogs), @BMJ_Latest Statistically Funny on clinical epidemiology, & @MissingSciFaces.

 

For the non-Scottish among us:

skelf
/skɛlf/
noun
SCOTTISH

1. 1.
   a splinter or sliver of wood.
   
   
2. 2.
   INFORMAL
   a troublesome or annoying person.

 

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.