Several patients and advocates will travel to D.C. to attend the January 27, 2014 IOM meeting, potentially the only IOM ME/CFS meeting that will be open to the public. This trip will come at great cost to folks, not only financially, but more importantly in terms of the consequences to their health. The patients and advocates who will attend the meeting will do so representing the many patients who are sadly unable to do so.
If you want to help, here is something you can do. Please sign the petition linked to here. The petition asks HHS for the following:
We, the undersigned people suffering from Myalgic Encephalomyelitis, along with our families, carers and friends hereby ask Secretary Kathleen Sebelius to cancel the contract HHS signed with the Institute of Medicine (IOM) to develop “clinical diagnostic criteria” for ME/CFS. We further urge Secretary Sebelius to respect the consensus reached by a group of experts and adopt the Canadian Consensus Criteria (CCC) as the research and clinical case definition for ME/CFS.
Remember, even if you believe that this IOM “study” is inevitable, which is just a government talking point so far, protesting it increases the chances for a better outcome.