HHS announced that they were going hire an outside contractor to, among other things, redefine ME/CFS and create diagnostic criteria. The leading candidate was a company called the Institute of Medicine (IOM). IOM had previously been hired to conduct similar work related to Gulf War Syndrome and, by most accounts, completely botched the job, leading to much frustration by GWS sufferers. Knowing this, the ME/CFS community launched a grass roots email campaign to stop the IOM contract. Not long after, HHS announced that they cancelled their plans to hire IOM. The ME/CFS community breathed a sigh of relief. Several days later, HHS reversed course and hired IOM anyway.Now a group of leading ME/CFS doctors and researchers have published an open letter to the director of HHS imploring her to reconsider the entire project and, particularly, to adopt the Canadian Consensus Criteria (CCC) definition of ME/CFS. The letter is direct, forceful and is cosigned by all the big names. It will be interesting to see if HHS has the guts to ignore this (but history tells us they will).
The letter is republished here on ProHealth.