Here is something of interesting that Jack Elliot had kindly brought to my attention. Dr. Bateman has the following published commentary (post-IOM report release) that actually states ME will remain separate from "ME/CFS" and will keep its original code and diagnosis criteria.
""From pg 24 of the February edition of the ME Global Chronicle (
http://let-me.be/download.php?list.1 ).
"The Name And The Report
The editors: “Dr. Lucinda Bateman forwarded us the following considerations, to react upon by whomsoever feels like. Please mail to
contribute@let-me.be. We will definitely publish a gist of the reactions and answers in the next issue (or if needs must be extra edition(s) just on this discussion) of the ME Global Chronicle.”
The Report:
http://let-me.be/request.php?14
The Presentation:
http://let-me.be/request.php?15
Dr. Lucinda Bateman:
I encourage our me/cfs community to focus scrutiny on the content of the report, and proper application of the suggested diagnostic criteria, rather than the name. The committee felt it was inappropriate to use a name already linked to alternate diagnostic criteria, and, that it could create even more confusion to use an existing name in more than one way. It is my opinion that the non-US me/cfs community would be even more outraged to have the IOM suggest that our new diagnostic criteria are the "new" criteria for ME when an ME definition already exists and is in broad use outside the US
One central goal of the IOM report, and it is clearly stated in the report, is that the term Chronic Fatigue Syndrome/CFS, should be abandoned, not only because it has become stereotyped and misunderstood, but also because the illness it delineates is a heterogeneous group which doesn't equate well with groups delineated using PEM as a primary and required symptom.
The term SEID can be applied to anyone who meets the evidence-based diagnostic criteria outlined in the report. This fact doesn't mean that other criteria are invalid. For example, it is possible that patients defined by ME criteria may prove to be a more severely ill subset of SEID. My own opinion is that everyone with illness deserves a diagnosis, not only those of a certain illness severity. These issues can and should be sorted out with well designed studies. But many of the issues will resolve as we establish better objective markers and diagnostic studies, and when longitudinal studies are done.
I don't recall anything in the IOM report that states the term Myalgic Encephalomyelitis, or ME, can not be used to describe someone who meets published ME criteria. The recommendation is stop using ME/CFS.
The IOM committee reviewed published literature of a pre-determined quality published before a certain date, which I think was in April 2014. So the research regarding PET, MRI and quantitative EEG, that are so interesting and exciting to the ME/CFS community, were mostly published too late to include in the report. These, the many other studies in progress or nearing publication, and the pace of current research, led the committee to make a formal recommendation that the diagnostic criteria be re-examined and modified in NO MORE than 5 years, with federal funding, and by "nonconflicted" sources, so that the diagnostic criteria can keep up with research advances."