BOX 1-1Institute of Medicine Study on Diagnostic Criteria for ME/CFS: Statement of Task

An Institute of Medicine (IOM) committee will comprehensively evaluate the current criteria for the diagnosis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). The committee will consider the various existing definitions and recommend clinical diagnostic criteria for the disorder to address the needs of health providers, patients and their caregivers.

The committee will also 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 life span, and specific subgroups with substantial disability.

Specifically the IOM will:

• 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; and
• Develop an outreach strategy to disseminate the definition nationwide to health professionals.

Over the 18 months, the committee will consider four topic areas and produce a consensus report with recommendations. The recommendations will have a domestic focus; however, major international issues may be identified. 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 Criteria, the 2007 British National Institute for Health and Clinical Excellence (NICE) Clinical Guidelines for CFS/ME, the 2010 Revised Canadian Consensus Criteria, 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.