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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...

Discussed in this substack article by one of the authors : From Nefarious Networks to Legitimate Funding

How a Questionable Research Network Manipulated Scholarly Publishing Leslie D. McIntosh, Hélène Draux, Elizabeth Smee, Cynthia Hudson Vitale OBJECTIVE To understand the broad impact of one questionable network on publishing, including the publishers, countries, and institutions involved and...

Sure, I get your approach and argument for the line that you’re pursuing. You make it very convincingly and I’m not taking issue with that. What I’m less convinced about is that it’s therefore pointless to look at other ideas, at there being no benefit in also looking at other potential...

Isn’t one factor here that we see these mechanisms for activity in healthy people but don’t see them or know why people are more fatigued when ill? Not necessarily with ME/CFS but generally. Additionally almost everyone describes their ME/CFS fatigue as very different from this normal fatigue...

If they can explain how this will improve the care people with ME/CFS receive, particularly those who are moderate or severe, I’d be very surprised. I’ve yet to see a problem I or others here have experienced that could be helped by us filling out an activity questionnaire like this or goal...

Congratulations and well deserved @Tom Kindlon And I’ve only just read the rest of this thread, which is also extremely heartwarming, great work to all involved, especially @Robert 1973

And given that acetylcholine which has come up various times, so I can see it being possible there’s a mechanistic theory. But I can’t help but feel it’s a bit more of a punt…

That looks like this may have been from an earlier application as the date is 2024 and the Research Ethics Committee gave an ‘Unfavourable Opinion’ and possibly asked for further information. I can’t find another or updated application though so not sure what to make of it, but presumably they...

Interesting to compare this to previous use of Raman spectroscopy to differentiate between healthy controls and ME/CFS patients (including by severity) which didn’t include an exercise test...

That was my initial thought too but looking into it, they seem to be used more widely as proof of identity.

This may be useful as an alternative photo ID, it looks as of they can verify with a referee such as a GP surgery or social worker. I may look into this a bit more although they seem to only last 3 years https://www.postoffice.co.uk/identity/pass-card

That would possibly be a good broad question, what are the aims of the trial?