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If I thought people would read anything longer than ten minutes at a time I’d probably point towards work well foundation stuff too but I’m just making huge assumptions based on lay persons that if they see something they can tick the box in five mins ie ‘one slide’ they’ve less excuse to do...

On PEM concept I’ve gone with pointing people in general to the website of @PhysiosforME which is simple and not too overloaded with pages enough that I know they can navigate themselves and not find niche stuff but will get the penny drop coming through. I also point to Amy Mooney...

It’s something that I think might be easy to miss in the rush to play nice and not be divisive. But I’m not sure it is acknowledged, for all sorts of reasons, that eg going through an extreme GEAt and CBT when ill or ten years of being left flopping round like a dying fish whilst the normal...

I think a charity role would be well-timed and amazing. Does some more ethical form or ‘lobbying’ exist , or are you thinking something less specifically directly political ?

Does NZ or other countries have similar things and are they separate/combined ie any stories of where it’s been tried and the hows and what happened?

Yes it needs to be thought about. I don’t know enough about how APPGs work on the ground and dynamics that happen in these to know whether 2 ME/CFS MPs would get drowned out if they were either trying to get an issue prioritised or tweak a broader issue to also be accurate to ME/CFS in a bigger...

Interesting post. Your discussion in the middle about how those patients recently had clearly not been informed that the challenge approach had not been validated is interesting it struck me that the selling of the idea there is such a thing as a placebo effect that is in the patient mind...

I’m not 100% sure this is sensible to combine with long vivid at the moment I’ve dithered with lots of pros and cons (which depend on betting on certain things like whether govt is focusing on long covid re sickness going up and ‘sorting it’) but I think at the moment I err on the side of us...

it’s maybe a side note, or making it relevant to those ill with something else like ME, but of course what might be seen as ‘small things’ if temporary and it’s not you and that’s ’the only cross you have to bear’ is quite different to what might be the polar opposite when ill with ME. Where...

It's an interesting one of course because I've just ended up looking up coeliac disease, because when I was trying to see what NOn-coeliac gluten sensitivty was and involved one of the pages on this was from coeliac.org.uk . and it describes that as having similar symptoms to coeliac disease...

Interesting funding / conflicts there I’m just not fully sure why they bother because if people think they feel better or worse on gluten free then telling them it’s just because they expect it to - whether that is nonsense or not - seems unlikely to make them suddenly buy loads of bread and...

Very dangerous- I read the title of this and thought it’s like branding whole generations with labels that are added in unsubstantiated ways and aren’t removed when diagnosed in future prove they were wrong. In a just world when that happens the person who did the branding by misdiagnosis should...

Yeah they won’t like that last para. For multiple reasons

One thing I have noticed these days is how few and far between disabled parking spaces are. Particularly in places like hospitals where you'd anticipate there would be more than eg 4-5 people needing to use it who have mobility issues, and not a drop-off zone. But also high streets, where you...

Yes in that sense that is the driver behind it. I worded things badly there. What I actually meant was I'm not sure re: the suggestion that (and I was reminded of it when I saw recently a thread where someone posted comments in response to the draft 2007 Nice guideline from the British...

and being given the right advice, instead of confidently told by someone who is convinced by the wrong ideology. But yes, that was the exact same part that came alive for me. The idea that all of this suffering is about money is something I'd like to probe one day, because I'm not sure there...

I've found this from 7th Nov: Hospital's suspension of evidence-based medicine expert sparks new controversy | Science | AAAS which mentions the petition and some context too

This is interesting. I've just looked up Nordic Cochrane out of curiosity to see who the new head is, and found that it has become Cochrane Denmark in 2021: Cochrane Nordic moves to the University of Southern Denmark with an affiliation to the Center for Evidence-Based Medicine Odense |...

JUst looking this up to see what it says today as a policy: Spokesperson policy | Cochrane Community Not got far with reading it yet but thought I'd paste link here.

Worth a read. She also describes the support she gets now as amazing - I think this is mainly due to the MS trust as she cited one GP after her diagnosis said silly thing ‘you don’t look like you have MS’ you never know whether to take with a pinch of salt because support varies on individual...