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I'd like to have a go at the process of checking out a gene, to see how far I can get and to get a better sense of what the bears of bigger biological brain will be doing. I'm off to a great start, because I went to pick a gene from the Zhang paper and couldn't find a list of the 115 genes they...

Just stumbled across a mention of this HERITAGE study in David Tuller's interview with Charles Shepherd on the UK government's Delivery Plan for ME/CFS, and we don't seem to have a thread for it. This government website says: In addition to increasing support for ME/CFS researchers to submit...

From other threads: Bears of little biological brain might struggle to contribute, but as new genetics papers get published and the experts gather to brainstorm, I'd at least like to understand the game, as I'm watching it while munching on my popcorn. What will the experts be looking for...

It's now four years since publication of the NICE guideline. I wonder if it could be argued that it's time for an update, or at least a correction to the 2021 guidelines. On updates, NICE says (among other things): Corrections or changes to published guideline recommendations are made if an...

Well done, that PwME, for speaking out. What she says is in complete contradiction to the others quoted - the MEA, saying it needs to go 'much further' but has 'numerous strengths' :banghead: and the MP.

I think I may have confused matters with my focus on trials! I have slightly lost the plot, I realise! What uses are we thinking of for this measure?

That would mean remembering to do it, and constant effort of monitoring, though - I think that would be quite burdensome.

Same here - I've tried to track time lying flat and time with my feet in contact with the ground (i.e. sitting properly, standing or walking), but it's very burdensome and I've given up. I now track something that I used to be able to do daily but now can't do so often, but would be the first...

I'd like some more input on what would be meaningful deterioration and improvement, and it might vary from trial to trial. Trials have what they define as a 'clinically significant difference', which is (Google AI) 'a noticeable and meaningful change in a patient's condition that is considered...

I'm not concentrating very well at the moment, so I hope I'm not just repeating someone else's idea that I've read and then forgotten. But, having just read Jo’s paper, I think that the approach it takes gets around a lot of our issues about only occasionally being able to do particular things...

Thanks again to @Utsikt for giving me the link to Jo's paper. I've copied the relevant bits out below, reformatted for ease of reading. *** On entry, a set of criteria was laid down for each patient on the basis of their clinical state at entry, indicating what would be considered 'ideal'...

Can't find it either, and the search box turns up nothing.

Just gone for a look and am baffled by the giant hand holding a bunch of fairy lights that presumably aims to represent BACME.

Why do you think it would only be suitable as a short-term approach?

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...