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Fair. But looking at how they initially approached the study (2015/2016?), in conjunction with the cluster-fuck end product, may suggest they had a pretty good idea of where they wanted to go. Oh, I don't think it's going to be limited to just one patient community.

Mass hysteria? Made sense to me given the roots of the NIH coupled with how it's handled other contested conditions. Maybe they'll call in the interoceptive team to ramrod an investigation.

I think immune tolerance will eventually be shown to play a role, but that is tied into pathogens (e.g. latent viruses). This is a theory that seems to have morphed from just pregnancy and infants being born with it. I've been trying to get my arms around it, but having difficulty. It could...

https://krisnewby.substack.com/p/the-rise-of-the-lone-star-tick "During the last half-century, lone star ticks have rapidly spread from their original territory in the Southeastern U.S. While some researchers attribute this to climate change and shifting land-use patterns [1], I propose that...

Chronic Lyme seems out of place in so much as there has been an ongoing NIH clinical study into it since 1999 or there abouts. That's a quarter of a century of supposed parsing. So it's - on paper - clearly been investigated at length. Which suggests it's stalled at best, or become political...

Seems the NIH is shooting for Pravda-like accuracy and truth. Ironic that this is a NYT article.

That's just embarrassing.

Is technology making it difficult to muzzle potential progress in several discreet diseases, housed historically in separate silos? Easier to monitor and limit innovation, and eyes, if all the problems are interred together? This, theoretically, would be doubly important because of churn, and...

With proactive patient involvement (not just reactive), it would likely make it more difficult for malign interests to exploit the patients. That's not to say groups like the BPS ilk wouldn't still spin, but helping erect safeguards is important to many like me. It's not just picking a horse...

Almost a quarter of a century back, the first of three RCTs for Lyme disease was conducted at the NIH. Many Lyme patients were highly skeptical and demanded a seat at the table. Despite continued patient misgivings about the protocol, the trial appeared poised to proceed. Patient blow back got...

So are state institutions like the NHS or NIH.

That is an oversimplification of what happened. Cleveland Clinic positive findings, among others, played a role. There was much going on. Irrespective of who leads the way, the most recent NIH fiasco a case in point. I'd rather patients have more of a role in the steerage; if something goes...

Most foibles possibly ascribable to patients can be ascribed to researchers as well. They each bring strengths and weaknesses peculiar to their respective places, each their own acquired knowledge and earned perspectives. Each their own respect for the adherence to the scientific method...

Lyme. Geez. I seem to recall some advocating psilocybin as well. I find even the suggestion appalling. If it's a spirochete making people sick, and like its cousin it's in brains, suggesting psychodelics as theraputics potentially damages in more ways than one. Oh, sorry @Mij , you've touched...

Wasn't there also a chronic Lyme study which started to recruit way back in the latter 90's and, last time I checked, was still recruiting? Could be that ME/CFS wasn't the only area some sick people were apparently wary of the NIH. I worry that any contested disease may attract the attention...

Talk about counter-intuitive. But then again, I'm a creature of the 60's.

Feels like a medical coup took place during the depths of covid, and now potentially millions of sick are at risk.

https://www.nih.gov/news-events/nih-research-matters/insight-into-mechanisms-mecfs "These findings suggest that the fatigue of those with PI-ME/CFS might be caused by dysfunction in the way the brain decides how to exert effort." “Rather than physical exhaustion or a lack of motivation,” says...

Feels oddly like damage control.

Boy, I'd think twice about using the word "behaviour" in any hypothesis that involves pwME with this group...