A year and a half ago in March of 2018, many of the leading U.S. ME/CFS clinicians came together for a summit at the Bateman Horne Center to discuss diagnostic and treatment methods for ME/CFS.

There were three major goals for the summit, including to summarize and publish on key diagnostic and treatment methods; distill the most important clinical knowledge and intuition to guide and drive research; to establish a foundation of expert clinical knowledge; and to increase the pool of experienced ME/CFS clinicians. 

This past August, the summit participants — called the U.S. ME/CFS Clinician Coalition — published a six-page handout on how to diagnose and treat the disease aimed at clinicians uninformed about ME/CFS, titled Diagnosing and Treating Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).

While there has been no decision or even discussion by the Clinician Coalition to choose any single case definition, it’s clear that Diagnosing and Treating Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is drawn in part from the IOM/NAM criteria.

As #MEAction undertakes its Values & Policy Initiative, we are interested in better understanding how clinicians and researchers use and view the various diagnostic criteria for ME and ME/CFS. To that effect, #MEAction asked 65 ME-literate researchers and clinicians to take our survey about diagnostic criteria: 22 people took the survey. (Click here to read about the results of the survey.) #MEAction also published an article about the various criteria to allow readers to compare them. (Click here to read about the criteria.)

The Clinician Coalition is made up of ME/CFS experts who have collectively spent hundreds of years treating many thousands of ME/CFS patients, and includes household names like Dr. Lucinda Bateman, Dr. David Kaufman, Dr. Anthony Komaroff, Dr. Nancy Klimas, Dr. Susan Levine, Dr. Peterson and Dr. Charles Lapp. (See the full list of Coalition members here.)

So, why choose to draw from the IOM/NAM criteria for their report? Dr. Lucinda Bateman, M.D., an internist and founder and medical director of the Bateman Horne Center in Salt Lake City, addressed our questions:

“One goal of the Clinician Coalition is to accelerate and facilitate access to ME/CFS education for all clinicians outside the ranks of the usual ME/CFS specialists. That is why we produced a consensus handout, and that is also why we used the IOM Criteria. 

“It’s about the politics of medicine. The widely respected IOM produced an “evidence-based” report and the reference is widely accessible. The IOM report is intended to identify core common manifestations of all with ME/CFS as a screening tool.  I really don’t understand the controversy, because if you hold it up side by side with the CCC it directly parallels.  It doesn’t matter if the CCC or ICC list a lot more detailed illness description—because these criteria are not published in a “reputable” journal and are not findable by someone in medicine who does not already know about the illness.  I’m pretty sure there are almost NO academic clinicians in the US who even know the CCC and ICC exist, after decades.”

“I personally completely disagree with most criticisms of the IOM clinical diagnostic criteria, as a seasoned internal medicine clinician specializing solely in this illness spectrum, as a clinical researcher, and as a member of the IOM committee.  I feel like those who criticize do not understand the criteria or how to use the criteria correctly. 

“As the evidence base showed, the IOM criteria, when assessed for frequency and severity, are excellent for discriminating ME/CFS from healthy controls.  The evidence base was largely dominated by data from the CDC MCAM study (all CFS expert clinicians’ patients),  papers by Lenny Jason (subjects followed after his epi study, patients from the CFIDS Biobank which are largely from ME/CFS clinician diagnosed patients, and others).   I am happy to discuss/debate this with anyone interested.” 

It’s interesting in this light that the results of our survey still show that the Canadian Consensus Criteria (CCC) is by far the most popular and respected set of criteria amongst ME-literate researchers and clinicians, but it may help to explain why IOM/NAM consistently held the second spot by a wide margin, especially when responders were asked which set of diagnostic criteria was best for mainstream medical practitioners.

“The fact that expert ME/CFS clinicians polled supported the CCC for both clinical and research contexts is a separate question than how do we recruit the rest of medical providers to screen for ME/CFS in the clinic setting,” Bateman added. “I think every case definition and diagnostic criteria are interesting and useful in the right setting.  It is understanding how the criteria define subjects and subgroups that matters.”