AHRQ Draft Comments for P2P

Edit: I actually didn't mean to publish this as I feel pretty iffy about the whole thing. "Put it in with the drafts for the blog. Easy to find later," I thought. Yes, well, good job brain fog.

As the goal of the P2P program is to "identify research gaps in a selected scientific area, identify methodological and scientific weaknesses in that scientific area," it is essential that the P2P program be aware of the existing research. However, the AHRQ Report's strident and narrow criteria excluded an estimated 90% of the literature on ME/CFS. Among this excluded research are groundbreaking biological findings (ME/CFS patients' inability to replicate work levels on 2-day CPET, low NK cell function and more) that could be evaluated for diagnostic criteria. Some of this research was done with NIH grants (Fletcher).

Inclusion of the highly controversial PACE trial and focus on CBT and GET as treatments is disconcerting. As is the lack of distinction in the report between CBT as an intervention to assist patients in coping with an organic chronic illness and CBT as an intervention to correct "aberrant illness beliefs."

Noting the "negative effects of being given a ME/CFS diagnosis" while failing to discuss the benefits is highly problematic. The implication would seem to be a concern that diagnosis fuels something akin to hypochondriasis, rather than an organic illness that exists regardless of diagnosis, in which case a diagnosis may be helpful. For instance, staying within one's "energy envelope," pacing and not overexerting oneself are crucial to the patient's prognosis. Once a patient is diagnosed they can begin to implement these lifestyle changers, whereas without a diagnosis they have no way to know that pushing themselves beyond their limits may cause lasting damage (as was my experience).

Although I support the report's claims that current research is insufficient and studies need more participants, I am concerned about the way existing research was represented. Specifically, I am concerned that the authors may have erred on the side of popular bias in misunderstanding the severity, seriousness and organic nature of this illness.