Dr. Bateman's comments on the IOM report

Nielk

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Comments printed in the ME Global Chronicle - February issue

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.
 

Nielk

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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.
my bold

Dr. Bateman clearly states here what the intention was in creating the new criteria. It was meant to be inclusive, Everyone who is ill, should be diagnosed. Even if they suffer from idiopathic fatigue? The concern of every patient that suffers is commendable, but I believe that this should not drive proper criteria.

In addition, there are many in the community who are severe sufferers for whom this criteria does not apply. There are many who do not suffer from "unrefreshed sleep". Since this is one of the three mandatory symptoms, this IOM criteria would leave them out. So that the IOM criteria do not describe every patient.
 

Nielk

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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.
Didn't they state in the report that evidence does not support the name M.E. and therefore should not be used?
 

geraldt52

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"My own opinion is that everyone with illness deserves a diagnosis, not only those of a certain illness severity."

If your livelihood is a fatigue clinic, why wouldn't you have that opinion.
 

halcyon

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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
I think it creates more confusion by calling it something other than ME. Are they trying to say that ME and SEID(CFS) are two different diseases? What evidence is there that the disease described by the old flawed criteria as CFS even exists?