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I suppose the other aspect is what you’re into and perhaps where the interest from others is? Ultras and backyards seem to have a bit of a cult following and quite a social and community aspect too which may be something you/we could tap into? There seems to be no shortage of events around the...

To be fair that is a problem with those doing the commissioning of services not the clinics (the clinics have a whole load of other problems). Getting the Integrated Care Boards to both understand the needs of the populations they serve and what services are appropriate may be the best route...

Same. I have a lot of v unpleasant cardiovascular symptoms when bad. And have tried HR, BP and HRV to monitor. There’s something here I’m sure, but am not sure of the reliability of these measurements to demonstrate the relationship or of his methodology or the estimation formulas used. They do...

Probably my fault by linking to the Wikipedia page for Baroness Scott of Bybrook rather than Baroness Scott of Needham Market. Thanks for the correction @Suffolkres

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...