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Did anyone else enjoy the name of the man who founded the Cyprus Long Covid centre offering aphaeresis for micro clots? (screenshot)

I thought Dr Galante's quote was worth posting in full, from the SMC material linked by MSEspe. I liked the recognition of the importance of follow-up outcomes. Professor Dame Wykes, (she of the ' easy solution' comment) said: Techniques beneficial personally for the teachers - well I guess...

Very sorry to hear that you have been unwell @DMissa. I hope you are feeling much better. Thank you for being here and your very helpful attitude to patient engagement. It lifts my sprints to see a researcher thinking in this way. I haven't read this paper yet, but I wanted to make what...

it goes without saying here, but perhaps the author needs it spelled out - maybe they will find this thread one day n=1 (how many other patients was this treatment applied to who gave up and went away, or stuck with it, but didn't improve before the researchers found this one 36 year-old man?)...

Thanks Tom. I think Covid has fundamentally changed universities, with most teaching offered online as well as, or instead of, in person. So, that creates opportunities for the person with ME/CFS to record lectures, and/or do teaching online in real time. Another advantage of academic work is...

Some art/craftwork producing high value items might be suitable for some people e.g. furniture making; knife making; quilting; jewellery. The sort of thing that can be done in fairly short bursts, and stopped if symptoms start. Maybe writing? I think if you get ME/CFS after you are...

Fantastic twitter thread by E Krebs, thanks Andy

I'm assuming this idea that signals from the innate immune system produce CAD which produces the itaconate shunt, causing reduced energy production is solid. My impression was that that is established biology, and it makes sense as a short term strategy. So, I think it's a reasonable place to...

Oh, that's disappointing. But thanks to the researchers for their careful work following up a lead. No pressure, DecodeME! :)

As an example of experiments being done, it was mentioned that Chris Armstrong and his team are working on measuring itaconate using MMR, using C13 tracer to see whether cis-aconitate is being turned into itaconate. He's also working on the idea that there is a build-up of ammonia resulting...

If the hypothesis holds, then it's still likely that some glucose and fats are getting processed in affected cells. And it is proposed that only some cells are affected, with perhaps people with more severe disease having more cells with the itaconate shunt operating. So, I don't think anyone...

Sure. Rob was careful to say this is an hypothesis, - that it sets up questions to be tested with real data. They have a mathematical model of the various processes and are inputting actual data on fluxes to try to understand how it all works. He wasn't saying that people with ME/CFS have a...

Just on the genetic possibilities, Rob did mention that there were gene mutations that might predispose someone to problems with the itaconate shunt. He mentioned for example that there are common mutations in CLYBL, an enzyme that acts on citramalyl-CoA, that reduce its effectiveness.

Here's a screenshot of one key idea. See the red "Innate immune trigger" in the top right? It should only function for a few hours or days, while the adaptive immune system with its t-cells and b-cells and antibodies gears up. It tells the cell to go into low energy production mode, so that...

Rob is a very nice man and I'm really pleased that he's working on this. Good to hear about the collaboration with Chris Armstrong's lab and Ron's lab, and great to hear that Vinod Khosla is funding work on this in Rob and Chris' labs I have 5 pages of notes from the video. It is a good...

For a study seeking to do this, the abstract is very unrevealing. Of course there were more females, because everyone knows that females are more likely to have FND... A quick google tells me that 40% white and 33% Hispanic is an unremarkable racial mix for the places the study was done in...

Nice idea, but doesn't it seem a bit far fetched when it comes to the actual data? The Neolithic period is the first agricultural revolution - when farming was first adopted. That's a long time ago - 4500-1700 BC in France according to Wikipedia. They claim that data in the 1870s shows that...

It was going pretty well until the treatment section. How he reconciles this sort of cure and improvement rate (which look very very much like the natural incidence and effect of ME/CFS): with the special multidisciplinary treatments that only Prof Milovanovic offers, I don't know. But two...

A disappointing abstract from Fred Friedberg, President of IACFSME: Non-improvement in chronic fatigue syndrome: relation to activity patterns, uplifts and hassles, and autonomic dysfunction, 2022, Friedberg et al

Have a look at the twitter thread. After a long list of congratulatory tweets, there are some critical ones.