Search results

Probably ignore them. At most it’s going to be Chapman, Blanchflower and David Jameson all sharing their stupid theories together, and while they’re all very irritating I don’t see what we as a community lose by just ignoring them. I think I asked Chapman to show me evidence of all the abuse...

Interesting that photography and meeting with DT etc took place in the US. That would rule out basically all small uk news organisations at least.

Glad we’re keeping hopeful ;) Hopefully you’re not correct.

Because it was cheap and no one in medicine bothered to challenge it.

This guy reported high heart rate on standing, weakness, coordination issues: https://www.vice.com/en_uk/article/jma83d/nasa-patient-8179-200 Crucially, it took him 3 days to feel relatively normal, and only two weeks to be back to how he felt before he spend 70 days in bed for the test.

A journalist is looking for a case study of parents of a child with ME who have had social services become involved inappropriately. I googled and she’s written about ME before: https://www.thesun.co.uk/fabulous/6235179/chronic-fatigue-syndrome-me-and-me/

Not sure how many agree with this point of view in this thread but this does worry me a fair bit. We’ve seen in the past that the message being inaccurate ultimately doesn’t matter when it comes to producing devastating consequences. Argh.

My MP said she had pre-existing commitments but would arrange a home visit with me to discuss ME and the issues around it.

Interesting. I had similar. Prolonged stress in my life including a lot of very traumatic stuff, then finally took a holiday and came down with a viral infection, and that was that.

Agree on all the points and also agree about the wider point of a change of focus / a clearer focus. It feels like if charities merged there’d be shared resources, finances and outreach to the extent that there’d actually be a hope of meaningful change. I, unfortunately am part of several...

I mean people with Alztheimer’s or late stage cancer don’t tend to do sponsored walks raising money for those charities, it’s their caregivers or family. Don’t really see much wrong with this to be honest

Reading those quotes is actually quite concerning. Brilliant scientist or not I’m not actually sure if I’m ok with supporting an organisation that has links to someone who’s expressed themselves like that, consistently.

We really need accurate numbers. It informs everything from advocacy to where research money can be directed. I don’t like the idea that people often claim “there are millions more undiagnosed” etc, as well. In the UK the oft used 250,000 figure has been the same for decades, which would put it...

They pretty much already do this. This is basically what anyone who’s actually visited a CBT/GET clinic within the last few years gets told (anyone else on the forum who has?). Your illness is real, it’s not all in the mind, the treatment is GET and CBT.

I agree with this. I think it’s better to more mindful of tone than content. It’s worth remembering that the person suddenly getting a bunch of tweets is going to likely have 1% of the knowledge that we patients have on all the history and politics of ME. It doesn’t really matter if we say “well...

I listened to an audio extract of this on audible and decided not to buy it. Not because of anything untoward, just didn’t seem my cup of tea. Is it an illness memoir or a purely first hand account of his experiences with alt medicine?

129 participants, self-reported outcomes. Feels like the S4ME membership could do something equal or even better, with better questions and a larger sample size.

Ah - thanks, might have to try tor or a vpn maybe

Hmm-looks interesting but for some reason the sci hub link doesn’t open for me. They rarely do. Anyone know why that might be, or am I missing something very obvious that you have to do to acccess them? Am using the safari browser on an iPad.

Quite weird to link Otaku culture with ME, in my opinion. Japan has definitely seen a rise in people becoming very insular and living lives without big social ties or connections outside of work. I’m not sure that, or otaku (essentially a pejorative term for a geek who’s animé, manga, video...