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I probably don't need to say this but this is the kind of evidence that needs to be collected and preserved: a senior professional deliberately using their influence to suppress legitimate criticism of their work. There are a lot of examples of SW and other BPS eminents doing this and I think...

I think this is why people like SW cling to power like limpets. It's because when they relinquish it, they can't keep a lid on the stories about their unethical and unpleasant behaviour. I am reminded (for no possible reason related to the comment I'm replying to or what I've just said) of the...

@Andy do you know whether this was asked in the DecodeME questionnaire?

That is a worry! Although maybe there are drugs that can increase NK function in pwME if its related to drug action. Or there are other anti cd38s or LLPC depleting drugs (depending on whether its llpc or other immune cells we want to target) that we can give low NK cell people. Edit: Oh weaker...

No, unless JAK-STAT inhibitors turn out to help a subset, which I don't think is as likely as dara working, although I do think it's possible. I'm not discounting the possibility of a breakthrough in the basic science leading to treatment trials in the near future but as far as treatments...

So hopefully a preprint sometime in 2028 in that case! I am incredibly anxious to see how these patients respond. If they have a similar response to the original pilot responders it will be a sign that the effect may be real and there may be merit to the NK separation thing. If they don't then...

No its ok I understand you're limited in what you can share. I would be interested in knowing more when you can say more because I thought the kind of interferon signalling you talk about probably wouldn't show up in blood.

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?