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Nope!

That’s my understanding too, it’s not saying we’re completely different diseases more that people have more of a predisposition towards certain symptoms. And since they’re focused on symptomatic relief through drugs which work on certain pathways it makes sense to look at it that way. That’s...

With this is mind, if I’m understanding correctly, this is why it would allow for both people feeling better and people feeling worse, depending upon the stimulus. So I can feel better after one immune trigger, whereby the T cell population involved and which expands are ‘not ME/CFS type’. So...

Audrey is now looking at proteomics and the Beentjes paper. So more exciting stuff from her and a really clear presentation I thought. PrecisionLife. An odd definition of PEM and saying they can see it in mice… (maybe I misunderstood) Beyond that it seems to be repeating what we’ve already seen...

Really interesting so far. Looks like Audrey has failed to reproduce this. No difference between people with ME/CFS and healthy controls. Paper submitted and should be live very soon!

It makes you think about how many have been prescribed in ineffective or even worsening medications. Stopping antidepressants can come with a whole host of side effects too. This may put people off stopping them.

We have threads discussing the PrecisionLife papers and other research which it looks like the hope is to replicate here, but I found these write ups from @Simon M very digestible overviews. Well worth reading if you’re waiting for today’s webinar...

Thank you! Where did you find that? I couldn’t find anything clear and went around in circles.

Genecards links for easy perusal, sorry I lost the nice colour coding and not all have directly associated genes, I haven’t checked them all individually yet, just generated the URLs

Same. I’m really interested in which bits people are and are not able to look at and how people can go about testing the ideas. Look forward to hearing more.

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...