Those of us with ME have been following the very similar case of the Gulf War Illness renaming and redefinition effort by the IOM. In an amazing reversal, the IOM has recommended a return to the name Gulf War Illness and two existing case definitions. Furthermore, the IOM states that it is not equipped to create case definitions, and that project was a waste of money ($850,000).
As our case is extremely similar, we are asking everyone to take action now - contact Congress and tell them, if the IOM can't define GWI, they need to also stop work on "ME/CFS" now. Follow this link for a sample letter and Congressional contact form: http://cfstreatment.blogspot.com/2014/03/making-hay-while-sun-shines.html
This artlcle gives more background information and also more ways that you can protest: http://cfstreatment.blogspot.com/2014/03/iom-retracts-chronic-multi-symptom.html
We also ask that you share this information widely, on message boards, social media and email.