I've had a chance to skim (not read) the report. I have mixed feelings. As far as the overall body of information goes, they cite slews of studies that CDC and others have pretended don't exist, and they draw conclusions based upon them. This is a bonanza for us because this report will carry a lot of weight. Much more than the CCC, which was published in an obscure journal that is not even included in major research databases. This could be used to convince the press and others about what the research really says. But I do not expect the average doctor to read it. If you doubt me, ask doctors you know if they read the text of the Fukuda or Reeves publications that present their definitions. I'd be surprised if they even know these two names. So what doctors will see is the symptom list. And I have some concerns here.
So first, I want to mention the diagnostic algorithm. It starts out by pretty much saying we are a bunch of fatigued people. And then it adds some symptoms that are also required for the diagnosis of ME/CFS. Not SAID, ME/CFS, because the name is a separate issue. But getting back to how algorithm presents this, we are a group of profoundly fatigued people with substantial decrease in function for at least 6 months who suffer with PEM and unrefreshing sleep, plus cognitive impairment and/or orthostatic intolerance. Considering the way this is presented I was not surprised when one news source gave fatigue as the first symptom on their list. And so, in effect, what this does is present us as a subgroup of fatigue, despite the ostensibly good intentions of the committee.
That was the diagnostic algorithm. On the other hand, there is also the statement proposed diagnostic criteria found on page 210. That statement is much better. It does not lead by saying we are a bunch of fatigued people.
So much of this depends on how this is presented (considering that doctors are not going actually read the report). And In my humble opinion, I think patients need to
make some noise about the algorithm and what is does.
There's one other thing. I don't take for granted that the IOM report is in. The government could dismiss it. And then what are we left with. We default to the Reeves or Fukuda, not the CCC. So I'm very conflicted about this. On one hand I'd like to criticize this as a worse solution than the CCC. But I don't expect that we will get the CCC any time soon (if ever). So I don't want this report to go away. I don't want the new definition to go away and have most research being based on Fukuda, Reeves, or Oxford.