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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...

I'm wondering how trained immunity might tie into immune tolerance (as in the exact opposite) where a damaged immune system lets in pathogens or toxins it otherwise would not, or allows for the reactivation of latent viruses, while, in theory at least, simultaneously muting antibody response (so...

"For Tal, the similarities with Lyme disease were uncanny. “Long covid looks exactly, and I mean exactly, like chronic Lyme,” she says. “One is caused by bacteria, and one is caused by a virus. And I started to ask myself this question: Does it matter which road you took to Rome? Or does it only...

And why, if anyone would care to venture?

I'm still not clear on the purpose of this test in ME/CFS patients. It's purpose, not whether it's actually capable of measuring anything, or whether inferences are rooted in reality, or if motivations of pwME make sense. Why'd this element find its way into a phenotype study? "The EEfRT test...

This in part is why I earlier suggested the patients need to lead the way. Let the pateints pick the PI and investigation team, and oversee the entire process. Politics and vested interests pervade medical research in many of our institutions. Patients might not be able to erase that, but maybe...

You may be right. I know you are. I'm not sure that's quite accurate. Nice thought, though. To a lot of people. Others, not so much. Agreed.

True, but I think that's where we need to be looking. Looking for a smoking gun the same way with the same methods hasn't been working out so well. Even with post-mortem efforts, I'm concerned how and what they'd look for. At least in post-mortem investigations, though, patients efforts can't...

"Their brain is telling them, 'no, don't do it, " says Nath. It's not a voluntary phenomenon." "This is a novel observation, says Komaroff, demonstrating that a brain abnormality makes it harder for those with ME/CFS to exert themselves physically or mentally." A brain abnormality of volition...

I think it does show something. I think the "effort" process demonstrates an unfortunate bias embedded in the study. I cannot figure out what it was included. Do you see this in cancer research? I think it should not have been there. I am offended by its presence. I think the patient community...