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Oh, I'd wager they had an inkling or two about what it was.

I don't mean to burst anybody's bubble, but some might suggest the NIH already has a policy template of sorts- and has for half a century. "Posture, mischaracterize, punt" is a seasoned approach and they're very good at it. As for the personnel, plug and play appears to have worked fine. This...

These are discussions that would benefit from someone with a channelopathy chiming in. There's a reason that Australian school of thought believe ME/CFS may be a channelopathy. Fatigue and exhaustion and effort and volition take on a different hue in that context.

We agree on all of this, at least up to "But there is an inability to use them etc" I think this is inaccurate. As sick as we can get, we ALWAYS have volition, we usually can put forth an effort (although admittedly some times we are so debilitated virtually no effort is possible); however...

Depraved.

"Experts warn that celebrity tell-alls and rampant “pseudoscience” surrounding Lyme is fuelling misdiagnoses. “Lyme disease has been plagued with misinformation for decades,” said Andrea Love, the executive director of the American Lyme Disease Foundation. “Unfortunately, there are instances of...

Some pathogens are known to have a tropism for cranial nerves (e.g cranial nerves such as cranial nerve VII in Bell's Palsy and cranial nerve VIII in some vestibular disorders.)

Borrelia is noted as one of the flagellin-culprits. Didn't see what percent.

Embarrassingly biased, IMO, if only because they open with the ALDF. Even the description of Lyme symptoms is comically skewed.

I don't believe I said I had any problem with exertion.

It's how the likes of the NIH employ words like "effort" that concern me, not how we interpret them.

I suspect this holds true for most diseases, from a cold or flu to Alzheimers and cancer, but you seldom see volition or effort summoned. Yes, but here is when I think we needlessly and worrisomely conflate volition and effort with exertion. But, yes, point taken, albeit with the rider that...

Fair, although I think the way we deal with the pysch exploitation is to simply reply "insinuations involving effort and volition in any disease should be invoked with great caution, if at all. The risk to prejudice the medical community far outweighs the possibility to inform it." As for...

Why do I get the impression we are not talking about the same thing? Regardless, I think the central truth of the problem is medical politics compounded by a lack of proper tools - and the spine to look - to reveal what is making and keeping us sick. I don't think many ME veterans would...

It's one thing to debate capability when it comes to most diseases. But I fear the lines blur when we venture into volition and effort. This may be even truer for illnesses like LC and ME. These and a handful of other contested diseases find themselves victims of a warped sort of medical...

Except for the effort part, which simply doesn't belong. People with channelopathies may have an involuntary block per se, but they still usually can exert normal effort; their muscles just don't respond as well. I have no clue what "sense of intolerability that prevents voluntary effort" might...

I fear research like this can send the wrong message. Take some deep breaths, calm yourselves - and you'll feel better? Even if it has a transitory effect, it may well just be transitory. Whatever is causing the problem in the first place - as far as I can see - is not being resolved...

Jaime was so good. I could never have comported myself as well as she as sick as we are. She conveyed some complex concepts easily and engagingly.

Maybe not landmark, but once again a curious concept, this one of acquired channelopathy, in that in many ways it fits into several contested diseases' sequelae - including ME/CFS and Gulf War. You'd think large scale replication efforts would have already been done, or at least attempted...

Yes. For me. at least, it could not be much worse. As with the NIH Eefrt bizarre weirdness, you have to ask, "Why"?