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

My question (below) was not addressed at all!

"Would you agree that a register of interests should cover doctors who develop and conduct publicly funded trials on social and psychological interventions? These trials influence national guidelines so are even more influential on patients than individual doctors. By the same token, shouldn’t the scope of a Patient Safety Commissioner include harm caused by the promotion of such therapies when the evidence may have been generated by doctors with vested interests?"

 

Nothing in my inbox yet...

 

It's only 11.30pm on 30th May in Pago Pago

 

I'm not in Pago Pago

 

https://twitter.com/user/status/1399631333022789637


https://twitter.com/user/status/1399631543031586819

 

Thanks for subscribing. Should come soon - that had to wait till after the holiday was over so someone could do it. We didn't want to draw attention to the report till the emails could go out on the same day as that announcement.

 

"To achieve a balance of independent appointment and community representation, for the three positions representing people with ME/CFS internationally I invited organisations to hold these positions"
I would have thought S4ME would have been an ideal (the ideal) organisation to be invited to have a representative on the IAG. It is truly international.

 

For those of our members who are unable to read the amount of text in this announcement, I'll be attempting to create a summary of what seems to be the key points so that you can get a better idea of what is going on. Of course, if anybody else wants to do that, I'll be delighted to not have to do it.

ETA: See here, https://www.s4me.info/threads/indep...ed-by-hilda-bastian.13645/page-51#post-347648, for the highlights.

 

We probably offered too many criticisms....

 

I know of these representatives from ME/CFS Australia through various social media groups and local support groups. I'd be surprised if any of them favoured GET in any form whatsoever. They all seem to be very well-informed and motivated.

Penelope McMillan is on the forum so I hope she'd be responsive to ideas and feedback from members here.

 

I don't mind if there are people from outside the community that opposes GET, as long as they do not have conflicts of interest. They should be easy to convince with the information that is available and their presence makes the review more credible.

 

Firstly, I agree that the long period without a public report was a serious problem: I can't do more now than apologize for that, and am happy to discuss how that came to be - with all the pressures of the pandemic, much that needed to be re-negotiated, and the desire to still reach the same goal, things didn't go according to the original plan.

I'm sorry if it wasn't clear that people were welcome to contact us with suggestions etc - in the March posting, we said suggestions were coming in. My apologies if it wasn't clear that this was welcome. We did note the email address to which enquiries could be directed.

When I became familiar with the open letter, I emailed S4ME, asking to whom I could respond (that was 19 May 2020). I replied exactly as I advised to, sending my answer to the open letter on 31 May 2020. There, I indicated that S4ME was being considered. This was at the same time as my participation in this Forum was being discussed. I consider my involvement in this Forum engagement with S4ME, and would think many others would see it that way. Indeed, I have received several messages from people thanking me for it, including encouraging me not to be deterred by the frequently discouraging comments made here. I have responded to every email I got from S4ME, and as I indicated in the report, added documents submitted by S4ME for IAG consideration to the list of past comments/critiques analyzed.

There were clearly discussions with multiple organizations representing people with ME/CFS - obviously the organizations which are now represented on the IAG, but others as well. Indeed, there were discussions ongoing with Cochrane with some people even before I was involved. I also obviously followed discussions on that topic - here, on Twitter, at other ME/CFS organizations, etc. The ultimate decisions about appointments, however, were mine: although I had lots of discussions and considered the advice of quite a few people with ME/CFS, none of those people should be considered responsible for any deficiencies people see with any of this.

Membership of the IAG was always going to be limited, and so could not be the only vehicle for groups' involvement in the process, and it won't be, now that the "hot" phase of the review from an external point of view has begun. And finally, I think it's important to keep in mind that, as described in yesterday's report, there is still a position on the IAG that the IAG will decide on. All the people and groups that indicated interest in participating will be considered, along with discussions and suggestions from that group about how to go forward with this.

I agree, of course, that there have been many weaknesses with the process so far - but I don't think non-communication by me with S4ME is one of them.