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It does sound interesting and a few other studies pop into my mind when reading the abstract. (Those that looked at membrane potential and the electrical properties of cells, muscle function and grip strength, etc). But as @Jonathan Edwards mentions there really is such scant information I...

As part of an ongoing experiment here is a summary of the paper (AI generated and read). I often find these more useful than the Abstracts but feedback welcome https://u.pcloud.link/publink/show?code=XZ7bjv0ZGbw7qqyhtlYym4OQ1XuaYyuR1l77

Thank you @Jonathan Edwards and Sonya

Thanks for the update @Joan Crawford :thumbup:

Very interested in all your comments. I use ear defenders and under them wired in ear headphones in the day when needed. There’s good white/pink/dark/whatever colour you want noise generators as apps or built in to most devices these days. But am looking for alternatives for the future. I look...

Maybe it’s cynical of me but perhaps it depends on his target market? Providing a premium service to premium customers who believe in shall we say, unproven technologies.

The Internet Archive (who run the Wayback Machine at web.archive.org) is confusingly different from archive.today (and their other urls like archive.ph) so I don’t think that’s the issue people are experiencing https://en.m.wikipedia.org/wiki/Internet_Archive...

There’s some longstanding archive.today issues with certain DNS providers (particularly cloudflare but maybe others). It’s complicated and involves a disagreement between the two parties but if you’re having issues you could try using alternative DNS servers. A couple of examples...

The big question I’d like to see asked is who takes responsibility for the patient and their ongoing needs? The specialist service? The GP? Having clearer visibility of this would be useful I think. Even if I think we know the answer…

It is going off topic but I may as well join in. As well as covid being ongoing there is a not insignificant number of us with ME who have terrible reactions to the covid vaccines (but not other vaccines). This is a problem in itself as we can’t get vaccinated so are at risk. But it also seems a...

As so often I think @Kitty has put it well. I agree. Pleased with how Sonya responded. We need to find a way for a group to have input rather than it falling on an individual (a bit like some of the suggestions for patient participation in research). I understand this is hard.

Short experience I had with them before AfME took over was while some people initially seemed good they turned out to be completely inflexible. As far as getting advice from a Dr they refused to deviate from the hour long appointments or discuss methods of communication that would work for me...

I don’t want to publicly go into details and I am just one person, but given some relatively recent experiences I’ve had nothing has changed for the better in the NHS specialist service in my area.

A quick and perhaps easy one.. Can AfME put up a prominent “Information for Journalists” page with key facts, figures and messages about ME they want to communicate? This seems to work well for other charities when a journalist needs something to copy and paste, er, research, for a news story...

How do we push the ‘do no harm’ message? To me this is key. There’s lots of people trying to do ’things’ but they are often hijacked or derailed or simply misguided. I feel we almost need to start by not doing things. And by recognising it’s ok to say ‘we don’t know’. A lot of harm is done...

Or perhaps how people who think there was a clear trigger think about or describe that? Or just how quickly he can get 100 of us to answer a question! We’re GuinME pigs

I didn’t want to let looking at the results impact my decision so decided to just vote and went for ‘more than two weeks’ as what I would now call ME happened later and ‘more than’ is a very vague definition (which could include more than 2 months!) It is interesting seeing the skew towards no.

Looks like a follow-up to this paper? (now with a disclaimer added as of 10/3/2023) Oxaloacetate Treatment For Mental And Physical Fatigue In Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Long-COVID fatigue patients: a non-randomized controlled clinical trial Discussed in this...

Definitely. It’s rubbish that we even have to think about this. Educating the healthcare professionals we interact with is just another challenge we don’t need. I guess one of the challenges in these documents, is that they can’t cover everything, they can’t be one size fits all, so some...

I haven’t been through this all but it’s good to see copying and pasting from the NICE guidelines rather than trying to rewrite things. I didn’t quite read it like that. “Severe” and “at all times” seems to be quite specific. But I can understand the concerns of people who are mild/moderate...