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Why word it this way? Why not title it "NIH details patients' experiences with post exertional malaise in ME/CFS"? Perhaps more to the point, why are they still tackling definitions at this stage of the game? Shouldn't they be talking about whether ME/CFS is an immune dysfunction, or...

Unless Kant was onto something, and causation is nothing more than perspective, a human "tool" with which to better navigate life. I think that was Kant. Sorry if I am misremembering. Sorry, too, if I am bungling what he or whoever said about causation. As for psychosomatic illnesses, just...

I am delighted whenever the voice of the patient is integrated into medical discovery. Focus groups, however, at least to this old time market researcher, smack of marketing.

I thought a general rule of thumb is pathogens resulted in elevated VEGF, at least as far as serum VEGF (vs CSF VEGF as pertains to one of the first two studies in this thread, not the one I linked to.) Same with cancerous tumors. Low VEGF seemed peculiar to a couple cardiac issues, and a host...

Are they looking at a relevant marker but for the wrong reasons, I wonder...: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC300888/

But there seems to me a meanness of spirit underpinning it. People are being harmed, but still this spectacle continues and encouraged and rewarded, like 19th century gentry gathering to hunt fox. It almost has the feel of perdition.

Wilding.

Yep. They build a mouse trap that, it would appear, in their eyes at least, virtually ensures they catch no person with Lyme, then appear to scratch their heads at delusional patients' beliefs they have Lyme. Is it possible the patients know something these researchers do not? Hard to tell...

The inclusion criteria are silly, and are predictive of the findings. What does France know about Borrelia other than what the US tells it? If they used the 2T CDC testing to argue no clinical evidence for Lyme, there's more than a fair chance some of these poor souls in fact had/have Lyme...

I'd be interested in knowing what part(s) looks pretty dubious. Anything Lambert is saying in particular, or just the presence of the tweet associated with this Mortem Group? Btw, I am familiar with neither Lambert nor the Mortem Group, but other than the tickplex reference, I found most of...

Another acute study. Generally speaking, acute and/or early disseminated cases - that are promptly treated - are not the issue. Late stage is. Persistent Lyme. What few potential Late stage patients they recruit appear to me as not having been even confirmed. This is not complicated. Find Late...

EM rates are all over the place, @chrisb . Factor in odd things like so-called STARI that presents with an EM like rash, but supposedly is not Lyme, or that EMs can frequently be irregular in shape and size and appear like spider or insect bites - and it gets even more bizarre. I wish they...

Perhaps. That may or may not be accurate. History of Borrelia can be suspect. History is written by...whom, when it comes to Borrelia? Maybe. I'm not sure I buy into it, but, sure, maybe. If different strains can cause different symptoms/manifestations, then that seems plausible on a species...

They actually do have data that chronic Lyme , or persistent Lyme, or late stage Lyme, all can survive antibiotic protocols. They have it in several animal studies e.g. Tulane University's Monica Embers, where it's routine to autopsy, and they have it in specific human case studies where they've...

And b garinii. I also think bb is now in Europe as well, if I recall correctly. Bb sensu lato vs Bb sensu stricto, where the former includes all three species, while the latter is just Bb.

A couple of quick, unsolicited observations, if no one minds too much: First, I'm always wary of retrospectives. They seem to me to be more susceptible to bias. Not always, of course, but enough to make them for me troublesome. Second, these patients appeared to have all been treated in the...

What a clear and thoughtful explanation. Thank you for taking the time. So, they need to pick a better word. Of course, we should be used to words that can be misused or...have onerous meanings and baggage with regard to us. Again, I appreciate you taking the time to share that.

I'd know if I were hyperventilating. And if I can learn how to breathe "correctly", isn't that at least a little suggestive that I learned how to breathe incorrectly? Perhaps not, but somehow I always thought this was a tad victim blaming, even if inadvertent.

I'm sorry, but I have difficulty buying into that.

Unfortunately, both were well-regarded in ME/CFS circles as good guys.