Monday, October 27, 2014

A Regular?

I'm putting together clothes to wear to a doctor's appointment, trying to decide which sweater and jacket I'll need: checking the weather online and thinking about how October feels here.

It's a few months shy of ten years since I came back to my hometown, cloaked in the shame of failure and an illness that didn't have a name.

Diagnosis came soon after. But there was little help involved and before the year was out, I was shuttered away like a summer cabin.

Rarely do I make it out. I spent more time interacting with this town when I lived in another state than I do now. Stuck in the house, it's years since I've been a regular anywhere but my room.

And yet as I think about October, The Replacements' "Here Comes a Regular" gets stuck in my head.

Despite being the end of a string of generations in this small town, I never fit in here. I still associate it with the melancholy, stifling familiarity I was running from when I left at 17. Seasonal jobs and a rotation of hangouts with shag carpets, faux wood paneling and hard alcohol clutched at my ankles. 

But now everything is inverted, and I yearn for that feeling. It's out there waiting along the highway and tattered back roads. The town, faded and weathered versions of my memory increasingly interspersed with the unrecognizable, though it has forgotten me, is mine.

Monday, October 20, 2014

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.