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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"?

Yes. Agreed. But it's complicated by issues you don't necessarily see in ME/CFS (just as ME is beset by things you don't see in Lymeworld). One example is diagnostics. Let's say you dedicate all that $25 million to erecting a diagnostics' platform that actually identifies directly whether you...

I'm all for getting more money in an area that is seriously underfunded, and I applaud such efforts, especially successful ones. That being said, depending where that money goes, it could be little more than Groundhog Day.

Broadly speaking, yes, and - on paper at least - for longer. These (TBDs and ME/CFS) are in large part diseases whose narrative is politically derived and maintained

Allocating more money in theory is a positive. Respectfully, throwing that increase at more or less the same groups who have failed patients for almost a half a century doesn't strike me as "a pretty big deal" anywhere. If a few million more $'s were allocated for ME research and given to the...

Meh. $25 million for "Lyme", defined and characterized by whom, spearheaded by whom? Spent by whom? As for $125 for tick-borne diseases, sounds alright until you realize how many TBD's there are - and how prevalent some have become. Babesiosis alone could use that amount. I suppose it...

To me, this simply seems poorly worded and vague. First, pwME can suffer from OI even when not in PEM. Perhaps if they had observed that PEM exacerbates OI symptoms, it may have been closer to the mark. Second, they appear to be equating energy expenditure with PEM triggers. Maybe so, but...

Spite?

You have to know where to look, and what you're looking for.

Back in the early 1950's the Nobel Prize went to a couple of guys who demonstrated that a fetus can inherit from its mother an immunological unresponsiveness toward an antigen or group of antigens. But some veterinarians had been purportedly toying with the concept before that, and well after...