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I'd be happy to clean that up if you'd be willing to send it to me. I'm very curious to see it!

There doesn't seem to be anyway to access that paper without paying. The only otherwise available info about the personalised outcome measures is in the abstract: Is there any way for us to see a bit more about the development and use of the personalised outcomes?

Sorry, @Suffolkres, I don't quite understand what you mean. Do you mean that your group will be invited to give feedback on the new service spec and that you would like S4ME to give feedback too? Is that spec out already? (I haven't been following.) Can you think of a way to do this that...

Our whole situation seems to represent a decades-long abdication of responsibility for the well-being of PwME by the medical profession (present company excepted!) and by government. We can't rely on them to change themselves and our charities seem to weak and too 'We welcome these first...

Excellent idea to have an action thread! :thumbup:

This is really interesting. I'm constantly saying to my GP, 'But loads of very elderly people in care homes must be bedbound, and it wouldn't be possible to transport them in a wheelchair because they couldn't cope with sitting for long. What happens when they need to see a consultant, or have...

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.