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We’re they both overexpressed?

Imagree with @Utsikt on all points. I would add that while SequenceME is going to happen or not based upon government funding they may well need funds now to be able to work on the bid for those funds. Difficult to be sure. But the Dara Phase 2 does seem to be the one more dependent on...

Yep, managed to borrow a laptop and did some stuff recently. Not for long but enough. Now noise is all sharp and jarring and sleep worse. Feel overstimulated. Tinnitus worse. Etc Always the same, just exactly where the line is varies, sometimes a few words with someone will do it, sometimes I...

There’s always an xkcd cartoon! I’ve started to go through now and am also a bit unclear on the value. @Andy makes a great point, it’s been shown that criteria are not a barrier to good research. Other things like rigour, scale and funding may well be. It seems this has been supported with a...

I know what you mean, but needs to be done with much more distance. I know I would have said more positive things after unpleasant experiences and outcomes from specialist services simply because someone was doing something. And probably out of a need to justify to myself the worth of what I was...

One more point, an obvious one but it seems important to reiterate for this when talking about looking at effectiveness or safety of clinics. If dealing with subjective outcomes where the subject is open to being influenced by someone who has motivation for a particular outcome, the outcomes...

I started to write a post but realised I’ve already largely covered the two things I think we need to measure and why I think this achieves neither. We’ve discussed patient led measures of outcomes and things like FUNCAP which could be used to measure effectiveness of treatments in other...

My understanding was the original Davis test was just about impedance in white blood cells while the work here expanded the approach to look at a range of cell properties and found an ability to differentiate using ionic content in the cytoplasm, ion transport through and across the surface of...

I agree with you both and it’s one factor I think is seriously underestimated. I haven’t seen a plan anywhere for rebuilding trust with patients who have been pushed away from mainstream medicine. Even if we get the scientific developments for ME/CFS we hope for there is a huge trust deficit...

This thread was the last we heard wasn’t it? Characterising the Electrophysiological Properties of Cells in Health and Disease [on ME/CFS], 2024, Clarke

Here’s the webpage with more details https://www.meresearch.org.uk/new-funding-to-advance-the-development-of-a-diagnostic-test-for-me-cfs/

If you do it would be great to hear what you make of it. I’m not sure what it means by high concentrations. Would topical applications mean local concentration was high enough? Or are the doses used in sprays too low so the other mechanisms are what counts? I couldn’t really make sense of it.

Absolutely the case. And it’s why it is inherent on healthcare and science professionals and institutions to maintain trust because rebuilding it is so hard. Many seem to miss this responsibility unfortunately. Through my experiences of ME/CFS and how we’re treated I have become much more...

I’ve been so put off by the lengthy questionnaires coming from some parts of the MEA I’d got used to skipping these sorts of requests. Perhaps a knock on of that sort of work they haven’t considered? But thanks to your words @Kitty I took a look and completed it. Very quick and simple.

A supposed expert pushing their own personal agenda and narrative before evidence is available to support it. Check. Journalists lapping it up. Check. No correction in the original article (well it is the Guardian). Check. Wessely. Check. If any of these people would take a more cautious...

I’d never looked in detail at the mechanism before, it was just something that was recommended to me by a dentist some time ago who was a fan oral use and I thought I’d give it a go due to the feeling of pain and swelling. It’s reported to have a mix of analgesic and anti-inflammatory effects...

That’s a really good point. We need both a mechanistic theory, the hypothesis and the observations, the evidence. I suppose in some ways it may not matter which comes first but as you said before, it’s usually the hypothesis which leads to the experiments to find the evidence to back it up. That...

There’s some good evidence that the most extreme views get over represented on social media, on various topics. Things like cable TV and tabloids are somewhere in between. But the more fragmented any media ecosystem is the less it needs to cater for a wide audience so the more extreme it can be.

Agree the text looks good. They’re mainly vehicles for drawing attention or publicity. But they have no legislative impact or substantive meaning whatsoever. I guess it’s a bit like MPs signing a petition https://www.parliament.uk/about/how/business/edms/

Interesting. It’s always been that back of the mouth/soft palate area that has become tender/sore for me, and over recent years I’ve found it managed quite well with small quantities of Difflam (Benzydamine) spray.