I've liked that blog entry, but I'm conflicted about the CDC funding. Look what they did with millions of dollars earmarked for this illness in the past. When they couldn't simply use the funds as a grab bag for other things they wanted to do -- as admitted in congressional testimony concerning a misspent million dollars -- they put the late W.C. Reeves in charge of spending it. He spent substantial money on looking for the disease in Wichita, Kansas and Bibb County, Georgia. As far as I know there had never been a significant number of cases reported in either place. Random telephone calls asking people if they were tired played a big role in these estimates of incidence.
He "operationalized" the Fukuda definition in such a way that doctors using this definition identified about 38% of carefully diagnosed mental patients with major depressive disorders as having "CFS" in a study run by Leonard Jason to test this definition. This means the "operational" criteria have no value for differential diagnosis. Since the incidence of major depressive disorders is much higher than the estimates of "CFS" this meant any research cohort put together by the Reeves "operational" criteria will be dominated by depressed patients who may not have ME/CFS. Doing this without turning research over to NIMH was quite a bureaucratic maneuver, particularly since the people in charge lacked any special training in that field.
Normally, I do not speak ill about the deceased, and whatever mistakes Reeves made are now history. What I want to emphasize is that he did not reach that position by accident, nor stay there and conduct research seeking to show that we were abused as children, without the approval of the CDC hierarchy. Simply handing funds to the same organization will not solve this problem without substantial changes to that organization.
I also want to take a shot at SEID's new definition from the IOM committee. They were careful to avoid making this operational or committing any federal agency to any course of action. They said many things which might be interpreted in many ways. Basically, all we got from them were words. It is up to the agency which funded the committee to implement whatever results from these recommendations, or not. We have had previous bad experience in this regard, as described above.
So, the IOM committee did not produce an operational definition. What do they suggest in their diagnostic flowchart? Sole entry criteria for diagnosis remains unexplained fatigue. There is a test for whether or not this lasts six months, which guarantees any case who comes in the door will go on the back burner (lower priority). There are decisions concerning post-exertional malaise (PEM) or post-exertional neuro-immune exhaustion (PENE). There are now some objective tests for this possible in research, if not in common practice, which are not indicated in the diagnostic flowchart. There is concern about disturbed sleep and cognitive impairment, which are also features of a number of mental illnesses. The best indication of serious impairment I can think of is orthostatic intolerance, for which there are objective tests. These are not on the flowchart either.
That flowchart contains no recommendations for tests to rule out known physiological diseases. It is entirely dependent on the interpretation a clinician places on the terms: fatigue, PEM, disturbed sleep, cognitive impairment and orthostatic intolerance. (A quick survey of clinicians will show that the vast majority misinterpret most of these terms.) It makes no attempt to exclude primary depressive disorders. An organization with the CDC's track record on this subject could easily interpret that in a way that simply makes this disease a category of mental illness alone with no need to look for physiological abnormalities.
The last time we went through this exercise we had 30 years of delay, obfuscation, neglect and abuse.
