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I just joined their facebook group where they are sharing some data from some staff members with POTS. (Seems like they hire people with POTS mostly, must be a weird office!) I also watched this video there's an interesting moment where the researcher shows how drinking coffee causes her...

There's the consumer version which prioritises battery life(right in pic) and the test-bed one that runs continuously and produced the charts above (left in the pictire below. It is bigger) They're also trying to program the consumer one so it starts measuring more intensively when a person...

It's expensive; not totally out of reach if it actually delivers better ability to manage symptoms. For me i'd need to buy an iPhone to make it work so that's extra expense too! However it's not available in Australia so it's all a bit academic.

I just watched this video and found it quite intriguing. The following four screenshots show examples of the device measuring drops in blood flow. It measures a proxy for blood flow to the brain but nevertheless looks useful @SNT Gatchaman you called for this to be done and they have...

One thing Levin won't stop talking about is the idea that electric charges predate neurons by a long way and are a more ancient way of coordinating and arranging things. They're present in algae, for example. I'm with him up to that point but he proceeds to talk about electricity as a form of...

This is why the book review starts on the defensive ! People are strongly repelled by the idea of electricity in biology. Among the ways they do it: https://en.wikipedia.org/wiki/Gap_junction Among the cool things explained by electric charge is how embryos work out left from right, placing...

Here's a graphic that shows Hwang's new wasf3-centric view of the universe! Figure 1. A model of how WASF3 may play a central role in regulating metabolism and immunity in response to ER stress and other signals. Upon ER stress, the level of WASF3 protein may rise at the contact sites...

Got my hands on the paper itself. My read is he is not phoning in a cheap review for citations; quite the opposite. He seems consumed by the idea WASF3 could explain everything. Everything! A relevant excerpt: Potential clues that WASF3 may be involved in the immune system come from early...

I'm interested in science's blind-spots and forgotten ideas. Things we knew but which were forgotten; thing we know but have become unfashionable to mention. So when I recently read about Tufts Professor Michael Levin and his amazing research on how electrical charge helps determines organism...

What great news. This is such a weird illness! Enough spontaneous worsening that you can never get too comfortable, and enough spontaneous improving that you can never give up hope !! I'm hopeful he could gain more function. If I know anything about mecfs it won't be a straightline trajectory...

Perhaps this could be part of the etiology of mecfs, a possible mechanism by which the "hit and run" theory could work: The virus affects the endoplasmic reticulum in certain cells, such that the unfolded protein response is turned on. Even if the virus is gone or mostly gone some of its...

Orchestration of SARS-CoV-2 Nsp4 and host-cell ESCRT proteins induces morphological changes of the endoplasmic reticulum Allison Kifer 1 , Franciso Pina 1 , Nicholas Codallos 1 , Anita Hermann 1 , Lauren Ziegler 1 , Maho Niwa 1 Affiliations Affiliation 1 University of California, San...

as for myelin, there was a Stanford paper last year that hinted indirectly at dymyelination: Abstract Here we report preliminary data demonstrating that some patients with myalgic encephalomyelitis/chronic fatiguesyndrome (ME/CFS) may have catalytic autoantibodies that cause the breakdown of...

In economics we say "all models are wrong, some are useful". It remains to be seen if this is one of the useful ones, but I very much appreciate the idea of developing animal models: it's how you get high-throughput science. I've often wondered if we could simply try to generate murine mecfs...

Good point @SNT Gatchaman and I've edited my post above.

I was able to find a list of side effects at that link shared by @josepdelafuente above and they include a 1 in 10 chance of reduced sense of touch. That seems like a rare side effect and it is a side effect of amifampradine, listed as a 1 in 10 chance by the EU...

Yes, I'm advocating for the research to proceed. However I dont think it's quite in the same risk category as some drugs. It is used regularly in sports doping. Iga Swiatek was recently banned from the WTA tour for taking it!

Ebselen is a decent guess, it's a glutathione mimetic and the most recent study of Beata Godlewska was measuring glutathione in me/cfs. But the dosing is very different, the protocol for me/cfs looks to be 15mg ramping up to 30mg, whereas they're handing out 400-1200mg for other conditions. And...

edit: Walder is not involved in this study! they're just trying their bipolar drug on me/cfs! !! fingers crossed it helps and I'm sure we will learn something but the theoretical basis is effectively absent. Walder's in vitro work continues this year and he still hopes to get to a clinical...

I got a continuous glucose monitor ($15 introductory price) and so far (only 48h so far) it has been fascinating. I don't seem to have glucose problems in the day or when I eat a bunch of carbs. But at night if I wake up feeling thirsty apparently my blood sugar is low. I wake up, visit the...