Most Recent CFSAC Recommendations

jspotila

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The Association posted the recommendations here. Sometimes there are language changes made by the CFSAC before the recommendations are finalized and posted on the Committee's website.

Here is the text of the recommendation you are looking for, Tina:

Motion 1: Following other successful networking models for complex diseases, we propose the development of a national research and clinical network using regional hubs serving as a patient care/education/research hub to fill a crucial need for the ME/CFS community. This network would link multidisciplinary resources expanding access to expert patient care, assisting patients in disability assessment, develop educational initiatives and certification programs, providing the core support for a much needed research and clinical trials networks, and providing experts to develop health care policy. We believe that such a proposal which integrates clinical medicine with basic, translational and clinical trials research would address urgent needs with respect to ME/CFS including physician education to train skilled practitioners and expanding access to medical care for patients in different regions of the country for the hundreds of thousands of patients that are needing care, and translational and clinical trials research to rapidly move new knowledge to proven successful clinical treatments. Research has been hampered by a lack of large databases that would allow subtype analyses and focus treatment approaches. This can only be accomplished by establishing a national network. This network will standardize recruitment efforts as large databases are collected. Clinical education and care will hub regionally from these settings, which will fill an unmet need for patient care throughout the US and monitor the effectiveness of standard and research treatments for patients with ME/CFS. This innovation will reduce costs currently incurred by emergency care treatment and specialty care, and the disability and loss of work force contributions that often occur with those afflicted by delays of treatment of this debilitating illness. We fully expect the Chair of the CFSAC will engage in regular discussion with the Assistant Secretary, at present Dr. Koh, in order to develop ways to implement this recommendation. Both sub-committees will be fully informed of these negotiations and the spring meeting of the CFSAC will be the place where the plans are vetted by the entire committee.