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Ion channel signalling seems to be one of the few new medical frontiers. I think it's great more and more researchers are looking. I think it's appalling so little is known. To be fair, you need money to do research, and to get money earmarked you need a critical mass of interest.

Nothing says scientific rigor like "telephone interviews". And less than 20, even better.

...or How Using a Psych Label for a Downstream Effect of an Organic Problem Can Be Both Fun And Fruitless. https://www.nimh.nih.gov/news/science-news/2019/nih-study-reveals-differences-in-brain-activity-in-children-with-anhedonia.shtml

There should be a Yelp page for ME/CFS researchers, a category on Yelp specifically for ME/CFS researchers. Then what would some of these "scientists" do? It would not be framed so easily, this sort of narrative of on-line activist vs beleagered scientist, etc. It would be consumers of research...

"It's still the same old story. A fight for love and glory, A case of on-line activists against scientists." This is a familiar tune. How is the author defining scientist? Is the implication the two sides can reduce down to Science vs. Anti-Science? Not sure I want to be cast in that light...

If you write about any industry long enough, whether or not it be medical, you will use rule-of-thumb numbers. It's a short hand. It doesn't make those numbers right. I use them all the time with Lyme when I reference 20% of those infected do not get well despite abx. I am fully cognizant that...

Whatever your decision, just a heads-up: The pills smell something awful. For what it's worth, they did not help me, but that could be a function of not being on them long enough. Cannot say for sure. And they are expensive. I have to grapple with this logic too much - if your body is depleted...

Well done @Webdog Any chance you can bring up the subject of skyping death prognoses? Can't help but feel for that poor family in CA. (Just kidding, of course. Still, a jaw-dropping incident)

I'm not sure I recall. I do seem to recall he thought he could correct this with breathing exercises. I know of one so-called ME/CFS expert - not Natelson - who also thought breathing exercises would resolve this low-carbon tidal pool POTS-likecondition, and the person he suggested for the...

I doubt the whole hyperventilation low CO2 variation of POTS. The hyperventilation thingee feels dangerously wrong, ie, going in the wrong direction.

Most pubs have at least one barkeep that could do pretty much the same. Or clergy person. Patients would have to make it to the saloon or church, though - then again, the same holds true with traveling to a talk therapist.

Will Natelson prescribe breathing exercises for OI, I wonder? :)

More like recipe instead of mechanism, but I'll give it a go: One part Voodooism One part Hawker One part Con One part Narcissism Two parts "Don't-Take-My-Stuff".

Sorry, my brain wrote late stage but my hands typed late term. There are no set time constraints, if that's what you are getting at. And stages can and do overlap re: symptoms. But, there are three defined stages and late stage is last. Late stage is almost synonymous with long term in that...

Agreed. It is important to get facts right. This would not be factual. Quite a few people know, if by long term you mean late term. A large number of clinicians know. Many researchers know. Hundreds of thousands of Lyme patients know.

I would imagine that depends on the cause of the RBC abnormalities or deformabilty-disability to begin with.

All these factors have merit. I used to be confident in what would trigger PEM. I no longer am. I cannot figure it out. :(

Every one of these posts has made me think. I live in a pastoral setting, and going out into my yard does not evoke PEM. It should, but it does not. BUT, going outside in general can evoke PEM. For me, it seems to be focusing or concentrating too intently or too long. So, @hedgehog , a...

When I was 5, I spit into my big sister's cup once and she definitely showed changes in behavior - she kicked the crap out of me and ratted me out to my Dad. Is that similar? It does seem to touch on all the salient points: human gut microbiome, abnormal behavior, rodents and poop.

If I recall correctly he had implicated a potential mystery pathogen, or at least something that elicited an immune system response typically associated with a pathogen I am eager to see if they've grown any closer to identifying either the culprit or the imposter-agent.