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(Edited to be clearer -was trying to write as little as possible) @Inara - I've achieved that at times (or it just happens). I can occasionally have brief spells on waking where I feel almost well. This might be anything from a few minutes to an hour or so. Then talking or getting up brings on...

@Jonathan Edwards Thank you that helps

Sorry if this is a silly question: Is toxic build up within the CNS evidenced and is there any evidence of it in pwME?

Hi Jen. I'm sorry but I'm a bit bewildered by this. It seems to me that each of these conditions have clinicians, organisations and patient forums etc that should be best placed to give good advice and information to pwME that have these comorbidities to share with their doctors/ anaesthetists...

Might be a silly question, but what would immune systems make of theses things - could they cause problems for some people? Also it's all very well detecting pollution but there has to be the political and social will to do something about it. They're telling fibs and they're not fooling us.

Sounds like yours is well behaved - mine likes to tell fibs from time to time. Or maybe I confuse it. Interesting idea @Sasha.

Thank you and welcome to the forum!

Welcome @mariovitali !

It's great to see so many signatories; so many senior academics and clinicians and a range of signatories from several countries. If any one has the cognitive function to count the number (I don't) that could be a useful fun fact for those on twitter. edit - typo

Here's the first full page of text as a taster. It's worth the effort of going through google translate or similar (for those who need it) to read the rest. I think it's really good.

This, though I agree with the whole post. It's about priorities and pragmatism. We especially need to keep our eye on the ball with the NICE guideline review taking place in the UK.

So many 'experts' who are all talk and no trousers. They pick and choose tiny little nuggets of biomedical information and use them as a foundation to pile heaps of fluff and manure on to. They tell us they're listening when they're not, and then make up fabrications about our bodies, our minds...

I'm bewildered - do patients ever get to name their disease anyway?

I agree with Marco and it's and not too difficult for people with no relevant background to understand

@duncan It's possible the woman in the article just wasn't tested for Lyme as part of her original diagnosis process. It's very possible that a GP wouldn't test if their area wasn't considered to be a lyme area. I don't know how widespread testing for Lyme as part of differential diagnosis is...

Could be useful but with the proviso that the anonymised data should be made available to other researchers, not just author approved ones, without shenanigans.

Thank you Gary, another good episode. Together we are stronger is very true of our community.

Very interesting. Thanks for posting @rvallee and welcome to S4ME

I think she could have taken a bit more care in what she said; for example I think she's overstated that fraud is a fact. There's certainly evidence that could point that way but until such time that fraud is proven I think she should be more nuanced in how she phrases it. However this is bang...

Yes!