If you are plugged in to the ME/CFS social media world, you may be aware of a proposed contract between Health and Human Services [HHS] and the Institute of Medicine (IOM) to recommend clinical diagnostic criteria for ME/CFS. Some oppose this move. Before we weigh in on the discussion, it is important to provide some context.
Any work the CFIDS Association of America engages in is bench-marked against our mission, to make ME/CFS understood, diagnosable and treatable. One of our core strategies is to accelerate discovery of safe and effective treatments; this helps guide our priorities.
The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of HHS through the Office of the Assistant Secretary for Health (OASH) on issues related to ME/CFS. Currently, the highest recommendation is to:
“promptly convene (by 12/31/12 or as soon as possible thereafter) at least one stakeholders’ (ME/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”.
To act on this recommendation, OASH intends to issue a contract to the IOM to establish a study committee of thought leaders and stakeholders to comprehensively evaluate the current status of criteria for the diagnosis of ME/CFS. In other words, to recommend clinical diagnostic criteria. A report from an expert IOM committee could provide the authoritative guidance needed to generate clinical diagnostic evidence.
The CFIDS Association considers clinical diagnostic criteria to clinically define ME/CFS a monumental and valuable undertaking. Any such effort should establish a committee consistent with the CFSAC recommendation; i.e. composed of experts in ME/CFS, with input from ME/CFS patients and advocates, who can assess the evidence in an unbiased, balanced and objective manner in order to comprehensively evaluate the current diagnostic criteria and make recommendations for operationalization and validation. Should the contract be awarded to the IOM, the CFIDS Association is committed to actively calling for the IOM to establish a committee that is in line with the CFSAC recommendation.
The CFIDS Association believes that any review of current clinical diagnostic criteria should include requirements to validate and operationalize the Canadian criteria . Further, the clinical case definition must be useful in primary care as well as tertiary care settings. Diagnostic criteria that define core symptoms will increase the diagnostic certainty, increase the likelihood of identification and validation of biomarkers and can provide the guidance needed to develop safe and effective treatments for ME/CFS – which is central to our mission to make ME/CFS understood, diagnosable and treatable.
ME/CFS patients are severely ill and urgent action is required. Development of gold standard diagnostic criteria would help address several of the highest recommendations from the CFSAC in the areas of research, education and policy. Objective diagnostic criteria that can reliably define the core symptoms is an important step towards the identification of the causes and cures of ME/CFS.
 Carruthers BM, Jain AK, DeMeirleir KL, Peterson DL, Klimas NG. Myalgic Encephalomyelitis/chronic fatigue syndrome: Clinical working case definition, diagnostic and treatments protocols. J. Chronic Fatigue Syndr. 2003 11: 7-115.
At 5pm on Monday, September 23, 2013, we received word from the CFSAC Listserv concerning the proposed contract with IOM. Read it HERE