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I'd like to know more about why people are doing this sort of thing trying to push these things onto people who have serious illness. I know that for cancer there is some movement towards having things like massage or other therapies to help with the stress of going through treatment, but there...

Moved post I've just found the following: Info-Guide-2-Care-and-support-planning-for-personal-health-budgets.pdf (peoplehub.org.uk) there might be others that are good and worth putting on here or the other thread, as this one focusing on the personalised health budgets, but is a useful...

If they use this to diagnose then we have a real issue. Because it is a great way given the PEM description of filling the ME/CFS category with loads of people without PEM. WHich would be the natural tactical reaction of people who built a career on research that used the wrong definition of...

they can't be that dumb, and neither are the MEA - this is what/how the illness can 'exist' that is being put down here. It is really serious stuff. And then they make it even more serious by saying it will be used for all sorts of other things, taking away other mechanisms for explaining what...

and things that just happen to be on the list of what they want to deliver claims to cover..

It feels like a way to end up justifying the PPS 'cos it's all caused by the mind they get random symptoms' clinics and 'fatigue, manage your energy levels' clinics not to measure ME/CFS. So the PEM wasn't built-in to their design of the way they have administered this process of...

There is clearly a problem - which should have been fixed - that rather than like all other medical conditions things making sure they fit for and help those who are most severe and ill as the priority, we have something being built around the 'least'. It's unacceptable and really unhelpful for...

This set of questions is very important because it is the cardinal symptom - the one bit the 'new' is supposed to be wholly rejigging everything to focus around that penny-drop. And this is a missed penny-drop at best and a begrudging nod to include the word as an add-on at best. This team needs...

There is also the issue of what does all of this matter if really you need to know if people are better, worse, same/similar and then probe on how. I have concerns that this will use a symptom list that won't be exhaustive and won't be relevant to many, and so certainly doesn't describe when...

Hoorah! Precisely, thank you for saying that. And of course as we all know you can stitch up these tests by making people do a few of these and benefit from claiming the effect that is only caused by x 'which was a controlled dose' when actually it will always be caused by people having found...

How can they answer the bit: ‘and whether that [ANS] responses causes PEM’?

From the little bit of actual results that seems to be included by the penultimate line of the results, noting that seems contrived given the primacy and decency effect it wouldn’t be the last line (is this another classic pay walled content of the article so you can’t compare results section...

This just feels like Trojan horse ‘research’ for certain individuals to propaganda the term ‘unexplained’ and a few of her choice hysterical woman suggestions of ‘factors’ (like ‘distress’) to scan-reading choirs

I dread anything with this name on it the conclusion in the abstract literally makes no semantic sense as a stance I assume because it’s so aimed towards misleading in implication whilst having to skirt ‘content’ that doesn’t exist to support it being missing I’d hope any researcher or lay...

I dread anything with this name on it the conclusion in the abstract literally makes no semantic sense as a stance I assume because it’s so aimed towards misleading in implication whilst having to skirt ‘content’ that doesn’t exist to support it being missing I’d hope any researcher or lay...

Just from athlete speak perspective she’s got this wrong. I talk of jog back recoveries to ‘get fitter’ where you are ‘recovering to do again’ and then there would be ‘proper recovery to perform’ which would be that no athlete would be doing a heavy training session the night before a big race...

:hug:

You’ve probably already tried this but I find the clinical pharmacist at my gp good for asking if there are options for things (and they know if there aren’t alternatives) but also whilst it’s still booking ahead a telephone appointment often less of a bunfight to get an appointment (you don’t...

Has anyone ever been to the ‘facilities management’ or similar department of a large organisation? it’s like walking back in time to the male heavy offices. Where people still often takes lunch at the same time every day And normally somewhere off site or in a basement. Talk about siloed...

To be fair I read an article (non ME) from a wheelchair user describing their experiences when they had cancer. The cancer ward he was staying on didn’t have a disabled toilet or bathroom and other facilities you’d expect eg different height benches or couches to make them accessible which...