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It's a lengthy (but very interesting) watch, but you can run your mouse along the timeline to see when Peter shows a chart summarising the data for each medical condition pops up. I wish I could find the link again!

Moved from a specific fundraising thread @PeterW looked at a bunch of 'comparable' (difficult call) illnesses to ME, including MS and Parkinson's, and did a comparison over several years of government/Wellcome vs charity funding of research, and found that most of the research funding came from...

The question there was, 'To ask the Secretary of State for Health and Social Care, whether he has had discussions with NICE on the potential use of PEMGARDA to protect clinically vulnerable people against covid-19 in emergency situations.' I wonder what 'emergency situations' were being...

I've been waiting decades for Star Trek medicine.

Is there any progress on moving towards a universal Covid vaccine, or a long-lasting one, or one less likely to produce side-effects? Looking for some good news...

Thanks, @Kitty. I wish we had some numbers on the various risks.

Are you talking about Covid vaccines? Do you have a link to the JCVI info?

Thank you, @Jonathan Edwards - it would be fantastic to have a legal campaign for this guided by your expert knowledge. I can access the site but can see no way to identify the people who have created the page. Their lawyers are identified, however - they are Rook Irwin Sweeney LLP. So it may be...

I agree we need to know what is desired, given the confusion in this area. I'm not sure whether we can reasonably expect to know who would staff our ideal service at this point - presumably when a new kind of service is set up, people come forward and get interviewed?

Is there any place for the idea that butyrate in the gut helps prevent leaky gut, and having stuff leaking from the gut into the bloodstream would have immune effects? Do people with colectomies have immune issues? A random googling pulled up this paper, which suggests they're at higher risk of...

I wonder if it would be a good idea to start a new thread specifically about what questions a PwME should ask if they're considering entering a treatment trial, with special reference to this one that you're eligible for. Having a thread on that would probably get more attention and more useful...

I'm really sorry to hear that that's your experience with your GP, and certainly I've seen similar posts from other forum members. But I don't think I can be alone in having a GP who takes new symptoms seriously and checks them out properly. I'd encourage anyone with worrying new symptoms to...

I wasn't aware that there was any doubt that dysbiosis was a thing but I'm not in a position to defend the concept! Above my pay grade but I'd have thought someone would have done a review somewhere, particularly since Lipkin and Norwich have been so interested in it.

I'd agree that there's no evidence on that thread that we do, but what people were discussing there was either taking butyrate supplements (and butyrate isn't know to make it past the stomach?) or following a high-fibre diet, which wouldn't necessarily help produce much butyrate if there was...

Would it be helpful to try to dig out more trials of narcolepsy drugs on PwME? What would be the ideal data?

IIRC there was quite a bit of interest in Xyrem for ME/CFS on Phoenix Rising, back in the day. A trial called SAFFE ('Slow-wave sleep and daytime functioning in chronic fatigue syndrome: effects of sodium oxybate') by Imperial College London was reported to be recruiting in 2015 but I can't find...

It's more the structure of the insomnia I was thinking might be revealing, such as whether it was problems getting to sleep, maintaining sleep, etc., and whether that could tie us to a specific gene. I don't know how specifically insomnia genes tie to any particular manifestation, though.

That's a really interesting question - and it would also be interesting to have a survey-based picture of what sleep problems occur in ME/CFS. My impression is 'all of them' but the picture must surely be more revealing than that, and I wonder if the precise picture could hold clues to which of...

I welcome the way in which you've thoughtfully disagreed with my position - I find this kind of constructive, good-faith discussion helps me sharpen my thinking and work with others on the forum to get to the best solution. I hope you'll keep it up! :thumbup:

Is there a precedent for an illness having been overrun by 'it's all in your mind' proponents and then moving properly into the medical sphere? Wondering if that would show us an example of the route out, but maybe we're unique (lucky us).