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Announcing CFSAC ME/CFS COE Recommendation:

On May 17, 2016, the Chronic Fatigue Syndrome Advisory Committee, a U.S. Department of Health advisory committee whose purpose is to make recommendations to the U.S. Secretary of Health on matters related to ME/CFS (formerly known as Chronic Fatigue Syndrome), recommended to the Secretary the creation of 12 ME/CFS Centers of Excellence, each to be funded at a level no less than $1 million/year in direct costs, for no less than 5 years, requiring an investment of no less than $60 million in direct costs for these Centers and ME/CFS. It was further recommended that these Centers be geographically distributed throughout the United States to enable patient access by all ME/CFS patients, and that these Centers be comprehensive in the services they provide which include: ME/CFS research – both basic and clinical, ME/CFS patient care, education of both patients and the public, physician training so that more physicians are able to provide advanced care for patients, and social services for patients. For those patients who are unable to travel to one of these Centers, the recommendation stipulates that there will bedbound and housebound patient care provided via telemedicine in the communities in which they live.

ME/CFS Centers of Excellence, while primarily targeted for ME/CFS research and patients, may include the study of related illnesses such as Lyme disease, fibromyalgia, Gulf War Illness, and Multiple Chemical Sensitivity. Such an inclusive strategy recognizes the similarities of pathophysiological mechanisms of illnesses which exhibit similar symptoms, and the efficiency in advancing the understanding of mechanisms contributing to these illnesses by studying more than one of them.

ME/CFS Centers of Excellence have the potential to explore and reveal a new class of infectious disease agents: those viral and bacterial agents which produce chronic unwellness and disability by either persisting beyond the usual and recommended course of treatment and/or incapacitate the immune system such that it is no longer able to clear the infectious agent or agents from the human body. It is, therefore, to everyone’s benefit that such Centers be funded.

For these reasons, we ask everyone to support the CFSAC’s recommendation for ME/CFS Centers of Excellence.

The CFSAC approved the creation of 12 Centers based upon the provided justification of these Centers. While the public meeting of the CFSAC did not afford an opportunity to present the entire justification document as submitted, we present that PowerPoint below to demonstrate the numerous reasons and urgency for creation of these Centers. Our hope is that you will read the presentation and become a staunch supporter of these Centers. We ask that you inform your federal government representatives of your support for the creation of these Centers.