CFSAC: IOM to begin study on Diagnostic Criteria for ME/CFS this month From: OS OPHS CFSAC (HHS/OPHS) To: [email protected] Sent: Monday, September 23, 2013 6:00 PM Subject: IOM Study on Diagnostic Criteria for ME/CFS We are pleased to announce that the Institute of Medicine (IOM) will begin conducting a study on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome this month. This study grew out of the 2012 CFSAC recommention to the Secretary to convene a workshop to “reach a consensus for a case definition useful for research, diagnosis and treatment of ME/CFS.” Because the use of and audience for case definitions for research and clinical care are very different, HHS decided that separate the processes were needed to develop them. The NIH is convening an Evidence-based Methodology Workshop process that will consider case definitions appropriate for ME/CFS research and the IOM will address the clinical diagnostic portion of the recommendation. The Office of Women’s Health/HHS is co-sponsoring the IOM study with several agencies that participate in CFSAC. A group of voting and non-voting members of the committee participated in the development of the Statement of Work. The IOM has agreed to perform the following tasks over the next 18 months: Conduct a study to identify the evidence for various diagnostic clinical criteria of ME/CFS using a process with stakeholder input, including practicing clinicians and patients; *Develop evidence-based clinical diagnostic criteria for ME/CFS for use by clinicians,using a consensus-building methodology; *Recommend whether new terminology for ME/CFS should be adopted;*Develop an outreach strategy to disseminate the definition nationwide to healthprofessionals. *the IOM, in addition to the committee meetings, will sponsor open meetings to enlist the comments and concerns of patients, family members and other caretakers, health educators, health care professionals, and advocacy groups. During these meetings, an open phone line and email address will be available to those who cannot attend in person. *as the committee reviews the literature, efforts that have already been completed on this topic area will be considered, including the 2003 ME/CFS Canadian Consensus Definition, the 2007 NICE Clinical Guidelines for CFS/ME, the 2010 Revised Canadian ME/CFS definition, the 2011 ME International Consensus Criteria, and data from the ongoing CDC multi-site clinical study of CFS. In an effort to minimize overlap and maximize synergy, the committee will seek input from the NIH Evidence-based Methodology Workshop for ME/CFS. *the committee will distinguish between disease subgroups, develop a plan for updating the new criteria, and make recommendations for its implementation. Any recommendations made by the committee will consider unique diagnostic issues facing people with ME/CFS, specifically related to: gender, across the lifespan, and specific subgroups with substantial disability. HHS is proud to be making this investment in ME/CFS. We have heard the advocates’ concerns and trust that many have been addressed by the information provided in this email. It is our hope that a widely accepted clinical definition and a clear distinction from case definitions for clinical trials and research will aid in advancing clinical care, drug development, and basic translational research for ME/CFS. The CFSAC Support Team hhs.gov/advcomcfs/index.html Sign up for the CFSAC listserv to receive the latest updates about CFSAC:[/size][/b] hhs.gov/advcomcfs/cfsac_email_list.html Chronic Fatigue Syndrome Advisory Committee (CFSAC) | HHS.gov hhs.gov The Chronic Fatigue Syndrome Advisory Committee provides advice and recommendations to the Secretary of Health and Human Services via the Assistant Secretary for Health of the U.S. Department of Health and Human Services on issues related to chronic fatigue syndrome (CFS).
Posted on: Tue, 24 Sep 2013 00:35:29 +0000
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