Search results

Do charities have anything to do with commissioning nodules and textbooks for things like this, in well-established areas? Versus Arthritis, for instance? If so, could they be persuaded of the need for this? I assume there's no ME/CFS textbook, so rather than writing a chapter for a more...

Does there need to be some sort of statement/explanation issued about what we need, and why it isn't this, that we could then ask charities and organisations such as There for ME to get behind? None of this stuff will be obvious to most PwME, who are very vulnerable to being talked into things...

Would you consider guiding and providing training modules or something? Were you still thinking about writing a book? There's such a vacuum here.

What's striking me about all these public comments from the ME organisations is that they all start off with saying nice things ('We're pleased to see it released! What a lovely first step!' etc.) rather than going for the jugular ('We're horrified to see the release of this appalling plan.'). I...

How can we find out? Because it looks deeply weird to me. NICE guidelines aren't private - why would any of this be?

That's one weird conversation on Pulse. I hope none of our GPs are in it.

Any way for us to seize the Petri dish and get some stuff evolving?

It sounds more as though we need things to happen in the opposite order - getting good doctors in so we have the research base from which to run clinical trials.

@Suffolkres has had a ridiculously agonising and unproductive slog of years trying to get a proper clinic in Suffolk. Is it time for all the charities to join up, choose a suitable location (Edinburgh?) and just start pounding and pounding and never shutting up about it until they get one? And...

This is outrageous. Good on Sally Callow for digging into it. Is she part of an advocacy group? Is she going to be part of a move to tackle it? One for the APPG?

Some home-testing kits just require you to stab yourself horribly in the finger and bleed inadequately onto a bit of blotting paper. Not suitable for measuring everything, but maybe some things.

I had a quick squiz at FUNCAP and didn't like it because it requires you to know how long you'd take to recover if you did the thing in question. But if you never attempt the thing because you know you shouldn't, you'll never know.

It's basically a massive distraction that you have to pay attention to in order for it to work, and so what's the point? It sounds very effortful. Surely what people want is to be able to live their lives while not in pain, rather than having to concentrate on something they don't want to...

Certainly my cold baths were.

:thumbup::thumbup::thumbup: Maybe we should just plain old design a trial! Sounds like we should set up a thread on that. I'm hearing a lot about FUNCAP and just had a look at it and didn't think it looked very useful. Maybe a project could get funding for 5 years or longer - less funding...

I weirdly keep reading the title of this thread as 'Great news about Fabricated and Induced Illness syndrome (FFI)'. I keep thinking it's all over...

I t OI is such a major and unrecognised part of ME/CFS I'd love to see something looking usefully at time spent non-upright. It's so incredibly disabling not to be able to survive vertically for long.

Wow, that would be really, really interesting. We have no real clue about recovery rates, though some indication that they're higher in children and young people, and DecodeME might include a decent number of younger people, given that you had to be 16+ to take part. It could be designed to...

We've been talking today on another thread about the possibility of doing a home-based wearable-actometer study of PwME to see if overactivity causes crashes, using PwME from the well-defined DecodeME cohort instead of having to go through the BACME/NHS clinics, and: 26,000 people did the...

Hi @Suffolkres - if you want the attention of individual people on the forum, you can put an '@' in front of their name, like I did for yours. If you type '@' and then start typing their name, the forum will start autofilling after a few letters. They will get tagged (the little red marker at...