In 2013, the Office of Women's Health part of the Dept. Of Health and Human Services contracted with the Institute of Medicine (IoM) to develop a clinical criteria for diagnosing ME/CFS. At about the same time, the National Institutes of Health included ME/CFS in its Pathways to Prevention program to decide areas of ME/CFS research gaps. We are being proactive in making sure they "Get It Right." Read some FAQ of our group. If you would like to be involved in collaborating with others who are working to make sure the IoM gets it right, please contact us.
These are the actions we have taken since the contract was announced:
January 2014 - Gave a presentation to the committee at their first meeting. (Video here)
It was about rejecting research that only required fatigue as a
criteria, what impact their results will have and separating ME from
idiopathic fatigue and doing away with the broader, fatigue-based
January 2014 - Submitted two documents informing the IoM committee of things they need to keep in mind as they do their study: Critique of 2007 NICE Guidelines.
January 2014 - Conducted patient survey to learn patient
opinions on what is the most important factor the IoM committee should
keep in mind as they do the study. 194 patients participated.
January 2014 - Met by phone with the IoM committee study
director and other IoM personnel assisting the committee, telling them
the valid fears patients have and that monthly phone meetings with
patients or overall communication as much and as often as possible will
help the situation. We also recommended they read "Osler's Web" and
watch "I Remember Me."