Perhaps a day where the researchers who have a immume signalling loop theory can present their research/theorising and what their next steps to prove or falsify their hypothesis would be.
If we think it's likely a signalling problem perhaps presenting the aformentioned theories plus the...
I just don't understand how it isn't crystal clear to everyone at this point that exercise doesn't help treat ME or LC.
If this wasn't ideological, it would have ceased to be recommended everywhere after the PACE reanalysis. Instead we now have nearly another decade of low quality studies...
Honestly I swear some doctors are going to need actual deprogramming from experts in helping the victims of cults before they admit it's not psychological. We'll all be lining up to get the treatment and they'll be saying that the treatment is a placebo and that their colleagues administering it...
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...
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...
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