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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.

That’s great to hear. It’s of course difficult for us to give constructive comments if we can’t access it. Hopefully you will be able to. Apparently the MEA are asking DHSC for wider access too

Well this sounds very welcome and positive. it’s a shame there isn’t wider access to review it and share it with other people who care for us but if it’s something we can recommend out GPs and other practice staff read that would be a great step. If there’s a way we as patients can call out the...

My goal is for healthcare professionals to modify their behaviours so they don’t make me worse when I have to interact with them. Honestly, I’m perfectly fine at managing myself. I sometimes think it’s not me that needs help, it’s me that needs to help the people I have to work with to...

Autusm symptoms did not vanish because the mice did not have autism. I’m always wary of ‘we did something to mice and found a way of reversing it’ studies being reported as cures for human conditions which we don’t even really know the mechanisms of or are able to clearly diagnose in humans...

So, you could say it’s the maintenance mechanisms going wrong rather than the pathogen recognition mechanisms? The cleanup crews rather than the surveillance? (Although there’s obviously lots of crossover, just thinking back to some previous ideas and discussions).

A good description of a lot of the nondescript symptoms we have!

Is the idea here that the neural aspect is purely via signalling or could there be a marker or cell surface protein which is also present on (some) cells in the nervous system which could also be being directly impacted in this process? I like the crossed wires idea. Whenever systems interact...

The official blurb from the website: The second episode is out and called “Proteins: Weird blobs that do important things” and is very accessible. Well worth a listen for what could be an interesting series. But perhaps skip the first, I haven’t listened to it as it’s a mammoth 5hr long! But...