Through a tremendous group effort, we have posted detailed profiles of the seven panelists not previously known to the ME/CFS community. There's some good stuff and some bad stuff. But it is (I hope) thorough, well organized and accurate. More to come very soon!
http://www.occupycfs.com/2013/12/05/iom-panelists-the-unknowns/
Thanks for that. Just from what I've read, I think that you're a bit too positive on a couple of them.
Also, to me it sounds like you give unwarranted weight to their scientific credentials, when this is inevitably going to be a political rather than scientific project. Thanks to all those involved in this, but my view is that you may have focussed too much upon the less important aspects of their background.
I've not read enough of her work to be sure, but to me, Mulrow looks like exactly the sort of person I thought would end up on this committee, and exactly the sort of person who would be bad for patients.
I've been reading some of that brain injury IOM report, and it's got a familiar feel to dodgy CFS stuff - vague non-recovery uses of the term 'recovery'; lack of real concern about response bias in non-blinded assessments; concern about the harm done by 'compensation-seeking behaviour' but not suggestions on how to ensure people receive compensation more readily and in a way the puts less strain upon them. All of the report that I read seemed to reflect a lack of concern with allowing medical practitioners to exert authority over the behaviour of patients based upon tenuous evidence, even if they were open about how poor a lot of the evidence was.
I've not carefully read the report, and do not have much confidence in my understanding of this area, but to pull out something relevant to CFS, and imo, worrying:
Despite having said:
One limitation is that objective measures sensitive to the cognitive complaints of patients with mild TBI are lacking in many instances and the use of subjective self-report measures as an alternative is problematic when studying treatments that cannot be blinded.
In their conclusion they describe this for ideal study design:
Ideally, study designs will include
• an emphasis on functional patient-centered outcomes;
• defined control groups of ideally wait-list or usual care comparisons
Early research may be most efficiently compared to no treatment or a wait-list control, since this does not require design of plausible but inert comparison treatments, and avoids the risk of comparing two effective treatments. Once a treatment is shown to be superior to no treatment, research designs may include increasingly precise comparisons to define the ingredients that account for impact.
Waiting list or UC control groups really aren't an ideal way of accounting for the biases which occur in trials. It looks like they could easily end up with a range of worthless placebo interventions competing with one another on the assumption that they are all superior to no treatment.
A real potential problem for us is that those on the panel will see 'medical care' as necessarily being a good thing, and especially lovely talking/behavioural therapies - what harm could they do? I want to see a report which is committed to hacking back the claimed expertise of some, and recognising that medical claims should not be made to patients unless they are supported by truly compelling evidence. Something similar to the brain injury report would probably be terrible for us. It's also similar to the old CFS report Mulrow was involved in.
I'm not saying that she's definitely a baddie, but the work of hers I've read reminds me of a lot of what I think is bad about a lot of CFS work, and why I was so concerned about the IOM contract in the first place.
Edit: even though I mentioned it a couple of times, I felt I should reiterate that I am not well informed about brain injury rehabilitation (although do have some interest in this area). I was reading the brain injury report and thinking 'if a similar approach were taken with CFS, would we be in trouble?'. I thought we would be, but it could be that there are reasons why the approach taken is reasonable for brain injury, and not for CFS, and I am just not aware of these reasons.