At the risk of being pedantic on the any .... Hwang's study on the patient with Li Fraumeni and mecfs showed this.
"Measuring the regeneration of phosphocreatine (PCr) after its utilization by exercise in skeletal muscle using 31P-MRS can noninvasively assess mitochondrial ATP synthesis...
You have to love when vague, general pain symptoms end up having an identifiable neural basis. Another one taken from our old friends the psychologists by good science.
love it. I'm all for exploration of samples that are easiest to collect, least invasive, easiest to send by mail. That's how you cut costs and lift sample size. Obviously if it shows nothing it's not worth it but we've recently seen some interesting results in saliva and urine. Not everything...
I found that survey to be a bit of a pigsty. Didn't ask any questions that might have got information from me, and I have quite an extensive employment history during mecfs. Garbage going in ....
Emerge ran a competition for the best story about Long covid. the winner was Hayley Gleeson, published at the ABC: https://www.abc.net.au/news/2024-06-16/children-with-long-covid-dismissed-doctors-myth-virus-harmless/103959078
your boy murph was a runner-up in the comp.
I'm keen on this kind of basic epidemiology, I have suspicions that populations are not equally prone to me/cfs even after controlling for pre-existing health outcomes.
I have been prone to thinking of me/cfs as a disease mostly of the north sea populations and their diaspora (my forebears...
authors: Stanford
Journal: PNAS.
cases: 650
controls:661.
p-values: some very low indeed.
tl;dr this study is more likely than most to have found something that is true.
That is exciting since what they have found looks relevant and novel.
This idea of heteroplasmy could also be relevant to mecfs: you need have the genetic problem in only some of your mitochondria for symptoms to develop. It would be an obvious way to distinguish mild moderate and severe.
Whenever I read about people having problems with the various complexes in the mitochondrial chain I think about Hwang and WASF3. He found in his patient that WASF3 inhibited two complexes joining together to make a supercomplex, which would run more efficiently (and then detected high wasf3 in...
Doesn't look like too much to me?
They checked 94 million genetic variants in patients, found 398 differnt mitochondrial ones in patients, there was one pathway that had variants in five/13 patients, being the Mucin von willebrand pathway.
There's lots of known unknowns in this space like plasma vs serum; pbmcs vs skeletal muscle; sample storage; collecting samples at different times of day, after different amounts of exertion, etc.
There's also biological sex and disease duration which muddle things up. And severity.
All of...
I emailed Walder and he said : "No drugs yet from the me/cfs study, should be finding some later this year if all goes well".
He understands as well as we do that when a drug emerges from this process it is merely a candidate; the process increases the probability that this compound may help...
Look, I also don't think this is the research process most likely to lead to a cure.
I do find myself attracted to a philosophical approach that seeks glimmers of light, even amid human and institutional frailty.
There's a small blurb here about the work Deakin are doing on me/cfs: https://med-projects.deakin.edu.au/projects-2023.php
yes, they write me/csf some of the time! Like many new studies it's being done by people who've wandered into this field from elsewhere; that lack of deep background...
I don't want to become the defender or spokesperson for this technique, but it does proceed based on that premise: we dont know what's wrong, so take an unbiased approach to see what drug makes things look like healthy cells again.
Walder used it in diabetes, he told me. Here's a couple of his...
This could also be a good thread to share a post I found in a facebook group for the in-ear wearable device that measures bloodflow to the head.
I'm sharing this post because I think it moves the goalposts in a really useful way; if everything else is just a proxy for getting blood to the head...
I've recently been focussing more on the orthostatic intolerance side of my symptoms; i regret not looking into this more before because there's some simple things that seem to help.
I have bought compression garments, which I'd used before and kind of given up on but these new ones seem to...
@Creekside I suppose if the book made all the claims you're guessing it makes it would be a bad book! I asked chatGPT though and it said guessing at what's inside a book is not in the top few ways to find out what's in a book. ;)
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