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So fewer than half who started finished Is my maths funky or do those 3 groups add up to 40, is so what happened to the other 6 who completed the 90 days? edit: aha @EndME spotted the same while I was writing this! They seem to recognise the problems with the study (and it seems amazing that...

It would be great if we could test and see what is going on. I’ve been thinking about all the different places that things could be up or down regulated or vary in different ways contributing to this cycle (basically like my list above). It sounds like @Jonathan Edwards has a narrower idea of...

Thanks. I haven’t really got a good understanding of the timescales of the different factors involved in the proposed feedback loop. On how long it takes for things to respond or be modified and how long they then hang around for. Could you or perhaps someone else give a rough idea or is it all...

I got the impression that expression of FcgRI was a factor? In response to activity the expression increases, which strengthens the loop. Is that the case in your theory? What would be the timescales involved, presumably macrophage lifespan?

Yes, I’ve got a whole load of papers from reading and searching on this area, I’m sure others have. I’m not sure what the best way of us sharing them all and understanding if they’re any good/relevant is. Maybe we should set up a thread for it? Would that be useful? But the general idea of...

Often I think the problem can be the reverse. A lot of this comes from a desire, or even a demand (institutional or patient) to be seen to know and seen to be doing something. When tbh a lot would be better served by the opposite. Not knowing and doing nothing are underrated.

Absolutely this. I didn’t get migraines until I had ME but do now, and although it may not be entirely linked (my mum developed them around the age they started for me) and I don’t always have visual auras, I do sometimes and there are a lot of similarities between those and the more general ME...

Yes, it did seem like one set of people with some things they have decided are facts making a report claiming that another set of people weren't aware of these facts being facts and that that is a problem. No wonder trainees and patients are confused. There's so much uncertainty around Long...

Post-COVID-19 syndrome in children and young people: awareness among paediatric trainees in South Wales Ahmed N, Vallabhaneni P Abstract Introduction Post-COVID-19 condition (PCS), commonly known as Long COVID, has been increasingly reported among children, particularly those of school age...

I’d say they’re not a waste of time, but we should also be realistic in what they can achieve and that it varies a great deal between MPs. The letters and statements out aren’t likely to be where the change occurs or is announced, but that doesn’t mean they can’t influence. Beyond the formal...

For one of the other possible treatments mentioned (anti CD52, Alemtuzumab) there was this overview of use in MS https://msddjournal.biomedcentral.com/articles/10.1186/s40893-017-0024-4

I’m aware of work on nasal vaccines, there was some hope they’d help reduce transmission. And I’d hope those of us unable to use current covid vaccines may be able to use them, but it’s all speculation. I don’t know if we understand enough about the long term immunity issues or the negative...

(Edit, I probably posted these two in the wrong order, oh well, a disadvantage of drafting thoughts in notes over time, but the suspect analogy came first) I think it was Jonathan who asked why these cells would have receptors for interferon gamma? I wondered if it was perhaps it’s a form of...

Someone else mentioned FcγRI can be expressed on neuronal and endothelial cells. Given discussion about problems there, this seems potentially interesting. How could it tie in. More speculation…. If FcγRI is expressed, even in low numbers, on neurons (particularly dorsal root ganglia) this...

That’s what I was wondering, cause or effect. Useful to know it could be either. I guess the only way we’ll know for sure is from genetic studies?

So there could be an MCTS1 variation that rather than impairing functionality here enhances it? Another one of the various contributory factors?

And here’s links to the genecards (edit: put in a spoiler tag to not clog up the discussion)

I’ve missed if this had has come up in discussion, it’s not referenced in the paper but I came across it in some searches ME/CFS patients exhibit altered T cell metabolism and cytokine associations (2019) Mandarano, Hanson et al It’s perhaps less the cell metabolism part as cytokine...

Is it worth tagging this thread with IFN-γ or interferon gamma to help in any searches given we’re now all very interested in it? Although there’s a trend, that mild were lower than controls is perhaps interesting? I’m adding the figure from the paper

And this is another reason I don’t think we should consider how some may interpret words or phrases used too much. Those people who are set in their ways didn’t trust us as reliable witnesses to our own experiences then and likely won't now. It’s a waste of time trying. Focus on those who wll...