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"Adriana Marques (chief of NIAID's Lyme Disease Studies Unit) was supposed to produce all these patients with post-Lyme. She didn’t produce one patient. Not one” To my tin ear, Nath sounds a little resentful here. I could be wrong. Still, a simple follow-up question I'd have wanted to hear...

During Q & A, Nath responds to a question about studying more than one disease at a time. I am tired, but it seemed to me he suggested that early on in the ME/CFS study design his group was going to look at ME/CFS and post treatment Lyme at the same time, and that the NIH's Lyme head couldn't...

Can't help but wonder if antigenic variation might play some role. Also caught my attention that malaria causes this IgM to IgG mishap. I wonder if other parasites might do the same (e.g. Babesiosis), as well as other pathogens. Great conference, with a curious and good assortment of speakers...

So there's this: "Considering the type of symptoms observed in CLD that share the common features of exacerbated central nervous system pain and sensory-processing mechanisms, CLD is included within the group of pathologies associated with central sensitivity syndrome (CSS)24. Pro-inflammatory...

"Transitioning into a long-term project will teach us so much that we need to learn about the post-infectious complications for Covid, and ME/CFS, chronic Lyme disease, all of these chronic conditions" I suspect there are people at the NIH that are apoplectic that she said "chronic Lyme...

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...