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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...

IMO any ire here should be directed at the shambles that characterizes most tick-borne disease diagnostics, Lyme in particular, and the complacency with which medicine at large treats the confusion that arises as a result. It's not patients being gullible. There is Science enough on both sides...

You seem very confident. That is reassuring. Can yu recall being as confident and being possibly wrong relative to neuroinflammation? Since your involvement with ME/CFS on this forum and, in theaory, about other diseases that might be related?

I also get confused. Everything gets topsy-turvey,. I've a link to a layman's explanation of neuroinflammation from the American Brain Foundation. I have no idea if it's correct, but I do believe much that is wrong with us is rooted in the brain - inflammation or not...

Fair. But it doesn't have to manifest in typical fashion, i.e. at the progressive expense of the infected. Take parasites, for example. Perhaps if it's not the virus that persists, or if it is, that it doesn't conform to usual characteristics. Similar to ME/CFS qualities. Of course, it...

I'm simply not sure this needs to be true.

Must? One or two assumptions folded into this logic? :)

When it comes to ME/CFS, solid evidence is in short supply. Hence forums such as this. Far too often, we are "others."

There are many highly regarded ME/CFS experts that would disagree with you. There are a lot of infectious disease specialists that would disagree with you. I'm thinking the way to flesh out these ideas, and maybe even resolve these differences in beliefs, at the very least involves talking...

Yes, one viral reservoir. But multiples that cause the tumblers to lock into place? Pathogen tandems that not just trigger the cascade of symptoms that is ME/CFS, but may help perpetuate it? If DecodeME offers insight into who might be susceptible to being hit by the ME/CFS car, I still want to...