IOM’s Redefinition of ME Invites Over-Diagnosis and Risks Inclusion of Primary Psychiatric Disorders


Senior Member
I'm pretty sure that was the fault of the standard psychiatric diagnostic processes, where "physical symptoms wot I don't understand" = "crazy patient". But generally I agree - as long as PEM is a core symptom, it's not necessary to require a list of other symptoms.
But how do you determine PEM? Here's a quote from the report:
One study found that 64 percent of patients with major depressive disorder experienced PEM, but the authors did not describe how PEM was assessed (Zhang et al., 2010). As mentioned earlier, these prevalence estimates may vary depending on how PEM was defined and queried for, and thus need to be interpreted with caution.
Isn't this kind of moot with the 2 day CPET test that proves disability?
It would be halcyon, were that part of the clinical testing. No such test has been required, and detailed clinical guidelines have yet to be released.

The first thing I looked for when I got the IOM report was the algorithm they used to determine diagnosis, for which they gave a flowchart. The remarkable thing about that flowchart is that there were no actions taken to confirm a test, except waiting 6 months if onset was recent. Given the intake label based on reported fatigue, this doesn't sound very different from what went on in the "bad old days" of "CFS".

I think a simplified version might be constructed which had only one diamond containing the question "Feel like treating this patient?" The "yes" alternative would have the action "consider another diagnosis". The "no" alternative would dump them into a diagnostic wastebasket.

This outcome is not an accident, nor is it the result of malevolence on the part of committee members. The unstated parts of the charge to the committee must have been that they could not required any increase in diagnostic or treatment costs without unusually strong evidence. Another implicit assumption was that the committee should not criticize the institutions funding the committee. In fact, if you look at the recommendation for how to implement these recommendations you will see references to the high regard the public has for HHS and the CDC in particular. You would never guess that these institutions had the power to set diagnostic and research criteria 30 years ago, and produced three consecutive definitions which are now all considered incorrect, inadequate and positively harmful. We do not even have the common bureaucratic admission that anonymous "mistakes were made."

Should I ask a busy and pragmatic medical doctor to read a 300+ page document which ends up telling him all he can do is offer symptomatic relief in any case? You can be sure he/she will not thank me, and that there will not be very careful consideration of diagnostic criteria afterward. If he can't spend any money on diagnosis or treatment, beyond what is currently done for amelioration of symptoms, why should he/she bother?


Senior Member
One aspect I did not remember until now. Some people are concerned that the IOM criteria do not have enough symptoms to diagnosed patients accurately. But the reverse -- having too many symptoms in any case definition -- can also potentially label too many people erroneously that have ONLY a psychiatric/ psychological illness.

For instance, Holmes 1988 CFS criteria required fatigue and eight out of 11 symptoms = minimal 9 symptoms. The reason why it was changed to the 1 major/ 4 minor = minimal 5 symptoms of Fukuda were studies showed Holmes might pull in too many non-CFS, psychiatrically affected subjects. Similarly Lenny Jason had two studies examining the rate of psychiatric illness among patients fitting the CCC, ME-ICC, Revised ME, and Fukuda. Surprisingly, the data suggested that the other case definitions included MORE people, up to two-three times more people, with psychiatric disease than Fukuda.

This led Jason to advocate for lesser but more specific symptoms.
I don't understand this logic.

If you have one set of criteria that have a required number of symptoms that bring in a set, A, of patients.
If you then add in extra symptoms on top of the existing one, and call the set of those patients B, B is a subset of A. You don't bring in extra patients by adding in extra symptoms.

So to take a specific example, if one had the SEID criteria and then added to them, the new group would be a subset of the people who satisfied the SEID criteria; you can't get any extra patients by making criteria stricter.