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I know you don't have a preferred theory per se, but what possible mechinisms do you find particularly interesting right now?

No I agree, but I don't know if we can totally abandon the concepts without being unable to explain pacing and PEM.

How do we explain PEM and pacing without them?

I know someone who has an incredibly difficult time battling the CHC for care. I won't go into details but the CHC people have been extremely unpleasant and duplicitous in trying to reduce or take away this persons care, and refuse to provide anything like the amount they really need. It's...

From Wikipedia: 'The PVN is thought to mediate many diverse functions , including osmoregulation, appetite, wakefulness, stress responses, as well as the regulation of social behavior.[2][3][4]' https://en.wikipedia.org/wiki/Paraventricular_nucleus Osmoregulation stuck out to me...

Totally agree with this. The culture shift required is huge. I think a scientific breakthrough could cause that change though. The additional issue is that the problem both involves the negligent, possibly criminal actions of some NHS higher ups and exposes how baseless and dangerous the whole...

Something I've been wondering about in my anxious wait for the severe case studies: How likely is it that the treatment works as in the pilot for moderate pwME but doesn't help severe? Or to look at it another way, if the severe patients didnt respond, how likely would it be that the pilot...

Decent sample size here. Could this be something important?

Good thing he's not on the NHS board of directors or anything otherwise he could really do some damage with his mad agenda. Seriously that's quite scary. It really highlights the endless expansionism of the BPS project.

I am actually really relieved to hear things are progressing, even if segmentally. Hopefully we hear more soon.

Yes I assume Chris and Sonya have already explored this avenue. Hopefully with some success. But if they haven't they really should.

@Jonathan Edwards did you learn anything about the SequenceME funding situation from your recent meeting with Sonya?

Is anyone in the PRIME network well positioned to look into this locus?

Seems he's retired - he's listed as emeritus professior here: https://www.trophoblast.cam.ac.uk/people/john-trowsdale Perhaps he or your old colleague might know who's still in the field working on this stuff who might be a good candidate?

As someone who had depression and intense 'anxiety' (DPDR, panic attacks, akathesia) since late teens, I see a lot of people on the long covid subreddit who have my pre full ME onset symptoms after a covid infection (including horrendous hangovers after drinking alcohol and cannabis...

From the main BTN2A2 thread- seems there might be some at Cambridge uni?

I have just seen I asked this a month and a half ago. Earlier I went on the BTN2A2 thread to ask if there were any experts in that we could get involved in research and found I'd asked that last month:banghead: MECFS brain fog is kind of funny, kind of scary.

Just been rereading this thread - is it likely they will publish preliminary results? I thought they wanted to keep the blinding for 72 weeks? I suppose they could unblind the clinicians and not the patients initially - is that ever done?

Anyone know if we're likely to see the James PET tracer paper before the Charite conference?

How can the lay public sort it out? It's funny, so many people have horrendous stories of mistreatment by doctors but they still want to believe there is nothing wrong with the system these doctors belong to.