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Are they conflating POTS with PEM? Do they even mention PEM? POTS is just a symptom/manifestation in some ME/CFS patients; not all pwME suffer from it, and it occurs in non-ME/CFS peeps as well.

Ok. The cynical me wonders, though. Most research endeavors fatigue-related seem to have dubious effects on our community, at least historically. A) Other diseases/conditions have PEM, or PEM-like similarities. B) Not sure researchers as a whole know how to induce PEM reliably. Most don't even...

Another fatigue study? How will they differentiate between any other chronic condition that involves fatigue? Are couch potatoes included?

Not really clear on how credible this statement is, at least in terms of POTS. I thought there were tachacardia and or/BP change requirements to qualify for a POTS diagnosis. I seem to remember that there are tests for MCAS as well, but I could be wrong; my memory is suspect. But I'm pretty...

Moderator note: This post has been copied and following posts moved from this thread: Concerns about craniocervical instability surgery in ME/CFS __________________________ Not really clear on how credible this statement is, at least in terms of POTS. I thought there were tachacardia and...

I think it was Dr. Bell that reported a similar thing about some of his ME/CFS patients. He observed some patients actually thought they were better, but when pressed about their health, they proved to be still sick.

Please cite one that wasn't short term.

Well, it shouldn't. But the reality is that it happens more frequently than I am comfortable with.

How can anyone tell that God didn't decree it? Or that the repressed emotions that caused these people to be sick were released, and they grew well? Similar logic. Placebo effect cannot be sustained. There is no precedent. This requires a leap of faith that cannot be justified.

This is an inference that may not be accurate.

Doubtful.

It's long over due for someone to methodically biopsy tissue from the entire body. If that is what he is proposing, I just hope he's looking for enough pathogens with the right tools and realistic metrics. And a large enough cohort.

Also variations of the Babesia parasite. They can test only for a couple. Of course, as far as I am aware, there is not an established relationship between the parasite and ME/CFS.

Alan Steere will be the guy. But he got a lot wrong. In fact, he was fairly certain he was dealing with a virus since abx therapy left so many of his patients sick. It's wacky in a way, right? how do you do such an epi study without first identifying the disease? But we do that now with ME/CFS...

Understood. I think I was not entirely clear. First. how can you map epimediologic efforts reliably after 1983 since definitionally what constitutes serious Lyme changed at that time, and not in a way that favored or even reflected patients' reports? Second, you need to look closely at earlier...

An inexorably shrinking majority. Too much new data appearing. You see it happening in the US, not just in terms of new revealing studies (like the persister studies out of Johns Hopkins and NorthEastern and Tulane), but in legislation and law suits , state by state. It will happen in Europe...

Well, welcome to Lyme. :) This can only be done if you look at all the epidemiological efforts, and do so chronologically. Context not only matters; it is essential to a thorough understanding of what has been/is going on with Lyme and Company. You appear to only have explored Steere and...

@Trish , yes, but not now. I'm going to sleep. Later. Willy = willy burgdorfer.

The History of Lyme disease spans scores of years, and hundreds of studies. This is a snapshot that even imo mischaracterizes the most recent Aucott studies - and I'm not an Aucott fan. This discussion is little more than a scratch of the surface. A tip of a toe in an endless ocean. There isn't...

RICO is an acronym that refers to a wide swath of law in the United States that prohibits certain activities: https://en.wikipedia.org/wiki/Racketeer_Influenced_and_Corrupt_Organizations_Act