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I'm not sure it was a failure.

Sure. albeit I wouldn't subscribe to the sickness behaviour thing. It's a non-human model. But back to your initial observation, why wouldn't a chronic infection resemble what you position as an acute? Acute is merely less than 30 days, more or less. As a general rule of thumb. We could all...

I'm confused. OI is about sensations. POTS is definitional according to BP and HR - this omitting any nonsense from entities with a horse in the race. What falls beneath either banner is political. Is POTS real? Is an unmarried widower a bachelor? I don't need to parse down further. I've...

I hope we don't forget the clutch of clinicians/researchers that helped keep our heads above water these last 40 years. Many of these have turned their attention to Long Covid.

Without fever, at least for most pwME. How do you convey that? Hangover-like? It makes me wonder about immune tolerance, which we lightly touched upon when it was the subject of the Nobel prize earlier. That's an entirely distinct rabbit hole.

Yes. Maybe even more, though: Patients know most doctors are wrong. It's not even intuitive; it's basic experience speaking to the clinicians' ignorance.

I think it's a fair comparison for many pwME, period. I fear it only addresses the degree. Some pwME have cognitive disability 24/7. It takes on a darker and more grim hue in PEM. True, it's merely less common and more difficult.

I think most look at PEM as ME/CFS underscored. It's ME/CFS on steroids. The relation reduces to degrees. It may be more appropriate to come at it as an overarching reaction that, although it involves usual ME/CFS symptoms, transcends all the "normal" sequelae in terms of time-to-onset...

I am not sure this study tells us much of anything that isn't fairly obvious: ME/CFS patients with balance issues are at greater risk of falling than healthy controls. That some of those falls may result in concussions is no more relevant than some may not, or some may result in a bruise to...

Zen and the Art of ME/CFS Maintenance. Uhmmmmmmmmmmmmmm.

A few years back I was in a well regarded ME/CFS study that required a four-day stay in-hospital. Among tests that included constant blood work and a lumbar puncture and a couple MRIs, every few hours I was asked to stand for ten minutes while they checked my HR and BP. They must have checked...

If true, medicine can probably trash about 99% of all the Lyme tests performed over the last 40 or so years.

I appreciate the point you are trying to make, but I'm not sure how it applies in the real world. Even though the KCNJ2 gene mutation and its relation to ATS were discovered back around 2000, and even though ATS is indeed a channelopathy, it is nevertheless still referred to as a syndrome, and...

Andersen-Tawil Syndrome, a channelopathy, is confirmed by testing for the KCNJ2 genetic marker. ATS has several clinical features that are fairly hard to miss, but they are missed regularly by competent physicians, and at the expense of the patient. Why? Probabilities. Clinicians are taught...

Yes, yes, yes and yes. So, all of the above. Nod. But what I was trying to convey is not to place too much value in whatever they might think - they are far too wrong far too often at the expense of people like us.

Me too. Many clinicians believe that a positive Lyme test from ANY lab is meaningless after an accepted treatment. Ok, but I wouldn't be so concerned about what any doctor deems credible when you've ME/CFS anyway - or Lyme potentially - because most don't bother with learning anything more...

Again, who decides what qualifies as good practice when Gold Standards are pretty much absent in Lymeworld? It's been my experience that good vs bad practice is largely a political distinction. Diagnostics remain a coin flip, treatment success seem still dependent on timing, and even with...

Who will be the arbiter of which practitioners receive airtime? For that matter, which medical approaches make the cut when in Lymeworld it's still a situation where far too many issues remain unresolved? 2T testing is still a crap shoot, the C6 is falling out of favor, and although there is a...

Good point. I should have written "Give me a historical paper trail, with finger prints intact", instead.

I wonder how this was proven given the existence of asymptomatic Lyme - whose prevalence was lamented by Willy Burgdorfer. Lyme and ME/CFS share more in common than several symptoms. It's not surprising that civilians can get lost in the double-talk and propaganda; clinicians and academicians...