List of nominees to the IOM panel by patient groups and advocates

[justinreilly]

I just posted an explanation of the IOM's conflict of interest policy on my blog. The discussion includes some of the other aspects of selecting IOM panels, including the requirement that the panel be highly competent in the issues, and fairly balanced in membership points of view.

ooo… what is this requirement that 'the panel be highly competent in the issues'? It seems that a panel of mostly non experts would not be highly competent in the issues, if by 'the issues' they mean the issues they are to decide, i.e. an MEcfs case definition.

If no one on the panel has actual experience with ME/CFS patients, it fails to meet IOM's self-established standards. Personally, I think there's a huge distinction between there being no obligation for a public call for nominations, and the prediction that there is no obligation for experts to have actual experience with patients.

I think it's obvious that people aren't only worried about a situation in which there is not one person with ME clinical experience, but the apparently ok by their own rules situation of having only a very few ME clinicians.

 

[justinreilly]

Jennie, thanks for making a FOIA request for the contract. I was starting to do that and now I have one less thing to do.
: )

 

[justinreilly]

I sent some questions to Carol Head, new CAA CEO. I asked who CAA nominated for the IoM panel and whether CAA nominated or endorsed Suzanne Vernon for the GWI redefinition panel. Her response on these topics:

...
We submitted a list of many names for IOM panel consideration. These nominees with ME/CFS experience are respected in the community and many have made significant contributions. We also felt it was important to recommend experts without direct ME/CFS experience but with extensive expertise in immunology and neurology – areas that are severely affected in ME/CFS patients. Many individuals recommended were not aware we submitted their names; we are not planning to release the list out of respect for those individuals.

For the question about Suzanne on the GWI/CMI – Dr. Anthony Komaroff, Brigham and Women's Hospital, suggested Dr. Vernon as a possible member for the IOM committee for the development of a case definition for GWI/Chronic Multisymptom Illness. She volunteers her time…

Not happy to see them nominating non-experts in ME.

Very disappointed in Dr. Komaroff for nominating Dr. Vernon.