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Yep. Ironically, it's challenging - and maybe a little backwards logically - to try to define something properly before it's studied.

Understood. I don't think the Georgetown study I was in was looking specifically for pathogens either.

I was in a Baruniak one several years back where they tried to induce PEM. They performed a lumbar puncture for that, as well as a fMRI, if I recall correctly.

I agree that testing blood is likely fruitless, especially if the pathogen - which I think you are talking about? - is sequestered in some sort of reservoir in the brain. One possible avenue might be looking for antibodies in CSF during PEM. You'd have to involve a fairly exhaustive antibody...

They lost me at pain catastrophizing and central sensitization. Neither should be used in any research into ME/CFS or fibro. When they are, for me at least, they represent a concrete tell.

After 30 years or so, my PEM seems to have devolved, i.e. it appears more randomly at time and more intense. I used to be able to forecast when PEM would kick in. Too much of any exertion, basically - but I had a pretty good feeling for what that threshold was. These days it's more sensitive...

This seems to me to cross the line that distinguishes condescending from insulting. Maybe I've missed your post: Do you have ME/CFS? It doesn't sound like you do. I apologize if I am mistaken.

In Lyme world there was a clinician who claimed to be able to cure 9 out of ten patients who had Lyme with a certain unconventional antibiotic. A couple years later he came back declaring he had found an even better protocol (essentially simply doubling the first) using the same abx. I was on...

How are you folks faring with severe ME patients?

I have not been on campus for about 15 years, but I seem to remember they had security protocols. Maybe I am misremembering, though. It may be worth a quick phone call - if only to be on the safe side. And, yes, I'd like to know about what insights the poster has to offer, too.

Is it in Bethesda? ETA: If it is in Bethesda, can people even get on campus without a pass?

Why? This part of the hypothesis hopefully is explained at length in the paper.

Sorry @Dude , we seemed to have posted similar thoughts at the same time.

My science isn't so good these days. Are they proposing a channelopathy?

Definitions in medicine pose a significant problem. Who decides which definitions are rooted in reality, and which are simply conjured while actually being rooted in politics or something worse?

How is this fibro?

There are several mischaracterizations in that article. Overall, I am a fan of the NYT, but not so much for its historical coverage of tick-borne diseases. I think the paper relies too much on mainstream institutions as sources, and that can be problematic. The 36-hour nonsense reflects that...

One possible reason? Scientific politics and the weight of legacy concerns and insurance companies. It's not like we are talking unprecedented territory when we look toward the CDC and its lackeys. Lyme is a prime example, as is the CFS construct itself. Scientific scrutiny is what we all...

I'm sorry, I'm not sure what any of this signifies, It merely smacks of someone who dislikes the idea of persistence, at least to me. I am inclined toward persistence - not convinced - but inclined, and I assure you that I am serious.

You and I and my wife are the same age. To truly date her, at least, she saw the Greatful Dead 10 times and Grand Funk and The Eagles and The Rolling Stones and... I never wanted to see any of them. I never did. I wanted Pat Conroy's signed edition, or Herman Wouk's, or James Clavell's, or...