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How do we know that none of the differences were due to the PwME being sedentary and the controls not? Should that be a general requirement for studies that do comparisons, or are there certain kinds of studies where they can get away with it?

OK, no problem - I realise there'll be things you can't make public.

'Liminal' is surely a massive red flag.

How important is it likely to be that they didn't have sedentary controls? Also, I was surprised to see them say, 'Cells from muscle and other metabolically active organs are not available from ME/CFS patients'. That's surprising. Is it true in the UK? Do we need a cell/tissue biobank?

It has come up on a private thread where I tagged you (but you maybe don't see such tags these days), where we're discussing the possible timing of an article for clinicians by @Jonathan Edwards that would include mention of DecodeME's results. Knowing the notice period might help us narrow...

Maybe the wrong thread to ask this question, but what do you mean by gene identification, and is that a process that the unskilled can help with? Is it a matter of scanning papers and looking stuff up?

Understood, I also like to do some 'If I was a billionaire...' thinking sometimes. But I'm wondering what we here, with 50p in our pockets, and only our brains and internet access can do.

But in terms of specific actions, what can we do?

Can you say how much notice we'll get? A week, for instance?

Is there an identifable next step for us in this omni-shambles? Or identifiable next steps that we would like others to take and that we could push for?

Sorry, I should have said that I didn't mean for ME/CFS but for other things that go wrong with us that require being examined or hands-on treated by a consultant. I'll edit my post.

Should we be producing some sort of document on what is needed and why? One thing we need is home visits from consultants when the phone/video won't cut it. Fat chance, maybe, but I don't understand why it's acceptable for the NHS to leave untreated people who are so sick that they can't leave...

That sounds good to me - the challenge is getting that story out there. I suspect the 'ME doctors' won't be convincable any more than the psychiatrists, though. There can't be many groups of patients who are basically under attack (and when it results in physical harm, 'under attack' seems...

Going to get a t-shirt with that on.

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.