No announcement and no fanfare, but it became public this week that the Office of the Assistant Secretary intends to award a sole source contract to the Institute of Medicine to create a consensus clinical definition for ME/CFS. Here’s the specific description of the contract:
The Committee will consider the various existing definitions for chronic fatigue syndrome and develop consensus clinical diagnostic criteria for this disorder. Widely accepted clinical diagnostic criteria and a clear distinction from case definitions for clinical trials and research will aid in advancing clinical care, drug development, and basic and translational research. The Committee will also distinguish between disease subgroups, develop a plan for updating the new criteria, and make recommendations for its implementation.
The Institute of Medicine is an independent non-profit with a great deal of authority, in part because of the independence of their process. The party paying for a report, in this case the government, does not select panel members.
The IOM is currently working on a consensus case definition for Gulf War Illness, and the committee has come under fire from advocates. Dr. Suzanne Vernon of the CFIDS Association is serving on that panel.
We have almost no details, and I have a million questions about it:
Advocates have been banging the case definition drum for YEARS. This has been a subject of great controversy at the CFS Advisory Committee. Many advocates were angry and disappointed that the CFSAC recommendation to hold a workshop on case definition was not followed. So is this the process that will get us where we need to go? We’ll see.