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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...

Do we know who from the NIH that was involved in the ME/CFS study will be involved in the LC effort besides Nath and Walitt? I worry about a research template of sorts being passed down. There is also the Lyme group. And isn't there a new overarching group that looks at several diseases in tandem?

Odd. To me it sounds awfully like he is clueless, indifferent, or part of the problem.

Didn't they have ME/CFS researchers advising them? There should be a response from that group. There also should be a coordinated response from every ME advocacy organization condemning this Russian Doll "effort" drivel embedded within what was advertised to be a serious and dedicated ME/CFS study.

It's not just fatigue or weakness. ME/CFS includes other feelings of sickness. Balance, poisoned sensation, pain, dizziness - this study seems to gloss over these. Others like cognitive decline, it seems to dismiss or discount. PEM appears MIA. Overall this study seems a gross...

I cannot decide whether this study is a Fool or a Tool.

With no less than the NIH imprimatur. Years of progress against BPS trash potentially undone. If so, unforgivable.

Agreed. Or bacteria as in your later post (and the mino and Vit D you referenced.) The thing is, there is conflicting evidence sometimes. Sometimes, too, none of the evidence on either side is really compelling. It becomes more of a camp thing. Cliques from which beliefs and even studies are...

I have seen so many failed attempts. I've also seen a few successes that didn't stick. I'd want real granular specifics before I'd participate.

The problem I have with all of this is it sounds too grand, too sweeping. If you only dealt with one third of the proposed triumvirate it would represent an enormous undertaking. Huge. We're talking proving or disproving persistence. If successful, it would be virtually unprecedented as a game...

Simple. If you get there, give me a call.

I hear you. Alternatively, there are people like me who view both their use in medicine as lazy. :) Yes. This is even more of a dilemma, for lack of a better word, where contested diseases are involved, and where inertia, indifference and even hostility characterize the better part on the...