Commentary by Charmian Proskauer, President
October 29, 2013

The positive potential. This is a convoluted story, but incredibly important to ME/CFS patients. After an impassioned recommendation from the Chronic Fatigue Syndrome Advisory Committee last October to convene a workshop consisting of ME/CFS experts to agree on a definition of the illness, the Department of Health and Human Services contracted with the Institute of Medicine (IOM) to engage in an 18-month process to do just that. The charge to the IOM included not only agreeing on a "clinical definition" for both adults and children, but also to consider whether the name of the illness should be changed, and find ways to educate health care providers about the illness. These are all worthy goals with the possibility of changing the game in a positive way for patients. The IOM is highly respected by the professional medical community, so the potential is here that the illness could finally be widely recognized and taken seriously.

The downside. IOM committees normally include respected clinicians and scientists whose task it is to "objectively" review the body of literature on a particular subject and draw conclusions based on published work. We all know that due to the very issue the committee is called to resolve (too-broad and too-inclusive illness definitions) the published literature is frankly, a mess. Reviewers with no first-hand of knowledge of the illness and the patient experience are almost guaranteed to draw incorrect conclusions from the published literature if they do not understand the history. And also given that, due to the same issues with the illness definition, the science of this illness is 20 years behind where we would like it to be, so there is not yet a comprehensive understanding of the biophysical mechanism of the illness. Any new name that is devised at this time is likely to be either ultimately incorrect or too vague (e.g., "multi-system illness").

Although the terms of the IOM contract are quite specific about including ME/CFS experts on the committee, there is no guarantee that there will be a sufficient number of members who have long experience seeing and treating patients with this illness to provide the group with appropriate context to guide a review of the literature, or to prevent a definition/name disaster. In short, if the committee includes a majority of respected ME/CFS expert clinicians and researchers, the result could put us on a good foundation for the future. If not, despite the sincere efforts of respected scientists, the result could set patients back for another 20 years. We cannot afford that.

Open letter to Dr. Kathleen Sibelius. On the same day the HHS signed the contract with the IOM, an open letter to the head of HHS, Dr. Kathleen Sibelius, signed by 35 ME/CFS experts, was published, calling for the contract with the IOM to be cancelled and asking that the Canadian Consensus Criteria (CCC) from 2003 be adopted as the clinical definition for the illness. Another copy of the letter was recently sent, with additional signatures (now totaling 50, both U.S. and international ME/CFS experts). The letter acknowledges that the CCC is not perfect, and will need to be modified as more is learned.

Will the IOM contract be cancelled? Some advocates are strongly calling for cancelling the IOM contract, feeling that in light of the Open Letter the IOM effort is not needed and the money could be better used for research into the illness. At the same time, some advocates feel that the contract is not likely to be cancelled and that there is some possibility for a good result, especially if the IOM Committee has a sufficient number of members with real expertise in the illness. The IOM has solicited names for nomination to the Committee from many ME/CFS groups (including the Massachusetts CFIDS/ME & FM Association) and individual advocates. The IOM process also calls for input from the public at several points, but the fear is that this could be just polite listening that will not really be heard.

Next steps. Some advocates are still working hard to get the contract cancelled. If it is not, we await announcement of the Director for this IOM activity, and of the committee roster. Who these individuals are, and whether they have deep knowledge of ME/CFS, will tell us a great deal about what the outcome is likely to be — good or bad. In the meantime, our community could benefit from hearing and respecting the diversity of opinion among ourselves. We are all working for the same goals — to have ME/CFS recognized and understood, and patients treated with respect and compassion. How these goals are achieved is only partly in our hands.

Listed below are some important links (a selection from among many) if you want to read more.

The IOM ME/CFS web page: "statement of task" and sign up for updates via email

Open letter to Dr. Sibelius with 16 additional signatures

Thank you petition to the signers of the Open Letter

Statement from The CFIDS Association of America (now Solve ME/CFS Initiative)

PANDORA Org position on ME/CFS definitions

Cort Johnson's commentary from Health Rising

Speak Up about ME - "I Live In Fear" (A plea for civility and respect for differences)