Search results

Thanks @Nightsong I’ve had a quick skim, not an in depth read yet. There’s some interesting analysis and breakdowns, but there are issues largely already covered in this thread. I think this is my biggest concern and encompasses issues already raised. We have no evidence that this can...

There is no evidence of this. We need the NHS to work with academia and industry to develop treatments for our condition and that of others. Agree, emailing them is a great idea.

That sounds like it may be worthwhile then! ;)

On a patient with traumatic brain injury after a car crash On paying for these treatments One of the other comments poses a great question The answer is of course no.

That’s great @Kitty My hope would be AfME can help educate them on our needs and we’d get something more like the ME/CFS Biobank setup, with an accessible and supportive clinic but also home visits for those of us who are severely affected. Maybe that’s being optimistic but they’ve got funding...

There’s quite a lot of information on the organisation’s website, this page is a good summary to start. Or the Wikipedia page has an overview. It appears to be a large scale project somewhat akin to the UK Biobank to collect patient data (blood, DNA, patient records, questionnaires etc) and...

Really well put @StellariaGraminea and I agree it’s very hard to recognise let alone understand or accept things if we have neither experienced them nor been taught about them.

Or loud neigh-bours? Sorry.. ;)

My top music tips are BBC 3 Night Tracks https://www.bbc.co.uk/programmes/m0008w2m Max Richter Sleep https://en.wikipedia.org/wiki/Sleep_(album) I listen to the first when going to sleep with a timer to stop playing. And if/when I wake up in the night have a Siri shortcut I can trigger to...

Sometimes it’s as simple as what limit is on the Zoom license (or whatever platform they’re using)

Great interview. Thanks to Chris and David. Really good to hear more about the project. Clearly a lot of work going on from a lot of people behind the scenes but the collaboration between AfME and Chris seems to continue to be really productive. We’re lucky to have people like this working on...

Oh no, hope it doesn’t knock you back too badly and you feel better soon :hug:

Audio only version for those who want it available here (audio ripped from youtube and converted into low bitrate mp3).

I’m not sure they do. I’m also not sure if it matters for the goals? This is in their FAQ

It is indeed a big survey. But we have plenty of time to complete it and can save our progress. There’s also a version to print and they seem to be offeribg some phone support for people who need it. They were also great at engaging earlier on in the design process. Lots of positives here, well...

And already a third of the way to the new target! Nice work :)

Sounds like it’s been selected for debate

It’s a shame the factsheet hasn’t been read and there’s some misunderstandings here. I completely get what you feel and felt a bit the same at first tbh. I wonder if there’s perhaps a difference or clash in style adding to things here? The length of the response and the point by point detail...

Some great comments by others which I support and @Nightsong highlights how important it is to get this right. And thanks to @TheDePaulGroup for the involvement and comprehensive responses so far. While we’re discussing differences there is a lot of shared understanding in here too I think...

I don’t think so and this was the question I had in the other thread about mechanisms of resistance to daratumumab in multiple myeloma There seems to be a lot of focus on NK cell quantity but less on other details which could be important here. I’d like to understand more or find out if studies...