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I entirely sympathise there. I keep putting off problems I should get investigated because I can't put myself through being treated like shit by consultants again. To say nothing of the fear of what I would go through during a hospital admission...

Interesting - would that still be a muscle sample or a different kind? Sorry to hear it's been fruitless so far but good to know you're adapting. I hope things progress soon - I'm very interested in this theory from both a scientific curiosity and a selfish need for a breakthrough point of view!

Yeah you're probably right. I guess I've just become jaded about the possibility of this government doing anything to help pwME within the NHS in the meantime, with their close ties to Wessely and and general ableist policies. But you're right, that point is the one most likely to get people to...

Conversely, we need the research funding because a breakthrough is likely the only thing that will stop the bureaucratic machine that makes people deterioate and then punishes them for doing so. SequenceME might actually be the thing that stops all of it from very severe people in hospital to...

'Jan 2013 Wessely, along with PACE authors Peter White and Trudie Chalder, attend a workshop hosted by the Science Media Centre to help them respond to the alleged “harassment” of ME/CFS researchers. Minutes from the meeting reveal that they classify freedom of information requests, complaints...

This is the hard truth of the matter. If we want to stem the biobabble coming out of charities and other advocates great, that could help. If we want to claim patients who are good and don't say the 'wrong' things to doctors won't get mistreated I think that is seriously naive and, from personal...

It really seems like there is a solid theoretical basis for your hypothesis. obviously I am a layman but it seems that there are many ways it could fit with the evidence we have - can you share anything about how your hunt for muscle samples is going?

What could increased expression in the pancreas mean?

I had this paper from yesterday in mind when posting

Ah, my mistake, apologies for flooding the thread with irrelevant speculation then!

Just caught this

Ongoing clinical trial of an IL-1 inhibitor in Long Covid: Derya Unutmaz reports an N=1 improvement from Ankinra (suggested by Grok, of all things [not an endorsement by me]):

Could something like this account for any part of the core symptoms of MECFS? And/or contribute to an immune-brain signalling loop?

From Wikipedia: IL-1β, in combination with IL-23, induced expression of IL-17, IL-21 and IL-22 by γδ T cells. This induction of expression is in the absence of additional signals. That suggests IL-1β is involved in modulation of autoimmune inflammation [15] A link to gamma delta T cells -...

This is really important and should be campaigned on more. I'd not heard of the phrase extreme phenotype strategy but the principle is common sense and it is shocking that more studies don't focus on the severe. It may be that signals only transiently visible in mild pwME are more often or even...

The sickest thing about ME/CFS is that the illest people are often the people who took all the bullshit advice and declined badly from it. Then they are held up as examples of 'people who didn't take the advice because deep down they don't want to recover'.

If that's the case it could be something interesting.

I have a friend with Hashimotos. She has fatigue and struggles with it but works a full time job, exercises, and has a full social life. That isn't PEM. PEM stopped me from having those things when my ME/CFS was mild. I think a lot of autoimmune fatigue is similar.

What even is long covid if they excluded people with MECFS though? Or is it just pre existing ME?

:banghead::banghead::banghead::banghead: