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CFSAC Recommendations – October 3-4, 2012

CFSAC voted upon and agreed for the following recommendations be forwarded to the Assistant Secretary for Health and the Secretary:

  1. Clinical

    CFSAC recommends that you will promptly convene (by 12/31/12 or as soon as possible thereafter) at least one stakeholders’ (Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS)experts, patients, advocates) workshop  in consultation with CFSAC members to reach a consensus for a case definition useful for research, diagnosis and treatment of ME/CFS beginning with the 2003 Canadian Consensus  Definition for discussion purposes.

  2. Education and Policy

    CFSAC recommends that you endorse the Coalition4ME/CFS Option 1 proposal for the ICD-10-CM that was recommended at the September 19, 2012 NCHS public meeting.

  3. Research

    CFSAC recommends:

    • Establishing a dedicated standing committee for ME/CFS at NIH.
    • Instructing the NIH to issue an RFA (funded at the $7-10 million range) for projects to establish outcomes measures for ME/CFS diagnosis, prognosis and treatment which would include but not be limited to biomarker discovery and validation in patients with ME/CFS.
    • Allocating specific funds to study patients with ME/CFS from past cluster outbreaks
    • Allocating funds to study the epidemiology of patients with severe ME/CFS.