I suspect I may take some heat for this, but I used to participate in Jason's surveys a few years back. But I grew disillusioned with his heavy emphasis on the whole tired thing - like he was validating the CFS CDC mantra to a certain extent.
I realize many consider him a staunch ally. If it helps, I am not particularly a fan of Fallon either (a favorite Lyme advocate who happens to be a psych, too).
People will ask how I would improve his questionnaire. As it is, he has added to stuff compared to when I participated five years or so ago, so that is good. But man! I would look at the various sensations that accompany PEM, like a poison feeling that can start in one's hands and spread throughout a body, even to a point of tasting poison, and stocking glove effect, and pins and needles in extremities, and sight deterioration, and vertigo and nausea, and migrating joint pains (where and degrees etc), and a full array of cognitive metrics like judgement and spatial issues and degraded response times, as well as math declines and speaking vs writing vs reading issues, and sudden lapses into dyslexia where before there had been known history, and dropping comprehension in the middle of a read or conversation, and severe memory issues that fluctuate and span short and long term memory.
I would look more at weakness, although he does address this. But really drill down on it. Like inability to push up, to stand up, or to turn things with hands, to focus or concentrate etc.
And how all this is part of daily life, only amplified and all mixed up with PEM - and depending on which activities have triggered the PEM (since this can govern which symptoms are exacerbated, too what degree, and for how long).
I know tired/fatigue is a component, so it needs to be in there, but Geez! the degree to which he concentrates and dedicates really simply adds to an overall misconception of what this disease can entail, imho. I do appreciate that for some, fatigue IS the principle symptom worsened with PEM, but not for everybody, and I suspect, not for many. It is - for many, myself included - the entire..gestalt, the amalgam. And for me, I hate the cognitive deficits, because those are deficits that, in part, affect me as I define me, and as I think others used to define me as a person. We are as we think, not what we can do, or how we are perceived, so this particular symptom worsening is repugnant to me.
