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Me either, Wikipedia has write ups for them both Baroness Scott (of Needham Market) Lord Bethell

Link to the PDF from the House of Lords Appointment Commission on the appointments made. The website has more info on how these appointments are made.

There’s a story on this from the MEA now too The winners are as above, there were 20 applicants and there’s a bit more info on the projects. Selected quotes below

Sorry you’ve been through this experience @CamTi it is sadly not at all uncommon

As far as I can tell it’s an odd organisation, that seems to be funded by but also promotes small businesses and has some sort of magazine. Their website is an odd one too https://prestigeawards.co.uk/ Part of this media company https://fenicemedia.com/ So I’m not sure I’d call them an awarding...

It looks to me to be an okay study of somehing. I just don’t think that something is necessarily PEM. It may be PEM if you can be sure what everyone is describing is PEM. But by the nature of the design we do not know that it is. Given people also use these surveys to distinguish PEM and...

I guess that’s a pattern we commonly see with many issues which face disbelief. First people have to admit there’s a problem. Then they have to admit they don’t understand the problem. Only then can people start to understand it.

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).