Well, to be fair, I guess they never did promise openness or democracy in the choice of participants in this process.
Given that S4ME specifically asked back in November 2019 to be 'kept informed of progress, and with a view to possible involvement' (see our open letter
here), I am disappointed that we and other ME organisations were not even informed that the process of putting forward names of possible participants had started, let alone how our possible nominees were supposed to apply.
Please someone correct me if I have forgotten an announcement of the positions being open and applications invited, and I will correct this post.
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.
