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Thanks, @Nightsong. I wish any of that addressed the issues of PwME who need to lie flat! Or even that the key bits actually happened.

PwME as out-patients I couldn't find anything on how to deal with severely ill PwME as out-patients in the NICE guidelines. I've been unable to access care for non-ME issues because of the NHS's failure to adapt to what I need. For example, I couldn't attend a unit that has every patient show...

PwME as in-patients This, from Section 1.17, 'Care for people with severe or very severe ME/CFS' seems to be the key bit in the NICE guidelines about what to do about PwME going into hospital as an in-patient. It seems to rely heavily on a 'care and support plan'. I don't know whether a very...

Fair enough! You are already doing a ton of stuff. :) Good point about scope. I had been thinking about something that those of us who struggle with hospitals could clutch in our paws if we went into hospital in an emergency but actually maybe there are several levels of this. I'm not...

When I told my GP that I was using audiobooks to get to sleep, he advised me not to set the book running for more than 20 minutes. I wonder if the same concern might apply - that you're enjoying the story and tempting your brain to stay awake. Plus, even low-level noise while you're asleep might...

@Jonathan Edwards, would you like to start a new thread, if you're interested in being part of taking this forward? I'd start one myself but if you do it, I think it will get more attention!

I used to do that with Terry Pratchett audiobooks where I was very familiar with the plots so didn't feel the need to stay awake so as not to miss anythng but realised that I was telling my brain that if I woke up, I could listen to some more lovely story to get to sleep again. I slept much...

Great! There is such a need for this. How do you think we should move forward on it? We recently had a discussion on the forum about the lack of progress on the Larun review situation and a small working group produced a letter that was then voted on by the forum and sent as being from S4ME...

According to Michael Mosley's book, ‘4 Weeks to Better Sleep’, listening to relaxing music before bed makes older adults fall asleep faster, sleep longer, wake up less overnight and rate their nights as more restful. He says that the best music seems to be slow tunes with a rhythm of 60 to 80...

I think this is a an area where S4ME could usefully contribute something better.

I just had a quick skim for the need of many PwME to lie flat and couldn't see anything. This is the thing I always have to fight for in any hospital appointment. I note the guidance is 13 pages long - longer than the MEA document that we thought would be so useless because of its sheer length.

It never fails to amaze me how many research studies by BPS proponents, when conventionally interpreted, show the exact opposite of what the author claim, PACE being a classic.

I was delighted to be reminded what a huge percentage of people had signed up to have their de-identified data shared and to be contacted for further research. Big win! Can't wait to see the results...

It looks as though the way to get real influence is to become a trustee but that's too much of an undertaking for most PwME.

Do brain scans not exist that could look at microcirculation when upright vs horizontal in PwME and compare it to controls? Or are the scans too low-res? Wondering if AI pattern recognition could do anything here, even with conventional MRI scans.

I haven't read the rest of the summary but I was stopped in my tracks by this. For an ME charity to make sick PwME sit through an hour of this kind of non-business before getting to any kind of useful items or the opportunity to contribute is appalling. I would imagine a lot of the audience...

:) True. Is there any reason to think it would work for ME/CFS, though, severe or otherwise?

Probably because, to those of us who know nothing about it, it sounds as dangerous as being struck by lightning, and has been used by psychiatrists, whose 'science' we have good reason to think poorly of. It sounds like kicking a faulty TV set to make it work. [ETA] Just to be clear, I think...

Are there any clinicians in the NHS with considerable experience of severe ME/CFS? Most of us who are housebound/bedbound never see a doctor for our ME/CFS, because there'd be no point - and we may otherwise simply not encounter doctors because we're too ill to go and see them and they don't...

Thanks, Kitty, I'm sorry I misunderstood you! What you're saying would be ideal, I agree.