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I worry that the 'neuroimmune' in there sounds like jargon for the sake of jargon, and will lead to raised eyebrows from some medical professionals if used by patients.

For me, it fluctuates, but it's hard to distinguish between long-term changes in my 'condition' and differences in other things that affect my health, eg: external thing in my life changing, getting better at managing my symptoms, etc. It's hard to distinguish between change. I clicked...

When authority figures are trying to present themselves as trustworthy and caring, it can take effort to spot all the problems. There's also a separate danger of people only discussing these issues in an echo chamber where everyone speak on the assumption that these authority figures have been...

It would certainly complicate Wesely's retirement plans!

This isn't particularly relevant to us, but is short (less than two pages), and I found it interesting for helping to understand the medical culture around trials/evidence when PACE came out a bit more. Sounds bad tbh. http://sci-hub.cc/10.1001/jama.2011.1960 "IDEALLY,GOOD MEDICAL PRACTICES...

LOL - whoops. Brain-glitch. edit... actually I probably meant this: 4. a response, usually vigorous. http://www.dictionary.com/browse/kickback It wasn't really clear though, so edited.

Hill has also done this work on vaginal mesh implants: http://www.bbc.co.uk/news/uk-england-bristol-41596436 Another shocking story of patients being let down and misled by their doctors.

Thanks. I can't remember what I was reading now. I've got about 200 tabs open on my browser that I need to go through and sort out, maybe it will be in one of them.

Good to have different people speaking about these issues.

It does seem that Australia has now gone further than even the UK with this stuff. I've lost a lot of the info I was reading about this... maybe I saw @alex3619 posting about this?

I felt a bit mixed about the film as a tool for advocacy, but then, I'm often not that interested in personal stories about people's ill health (they all seem so different, so difficult to interpret meaningfully, and so open to misinterpretation). The film seems to argue that ME/CFS should be...

That looks like the sort of activism we want to stay far away from. A lot of the alternative Lyme stuff can be dodgy, and there you've also got anti-vaccination stuff, claims about MMR being linked with autism... this is the sort of thing used to discredit Wessely's critics.

This is not to say that no people will find speaking to a therapist useful, but it does seem that there's a lot of BS and ritual around the claimed 'expertise' of therapists.

Another article on this from the Electronic Frontier Foundation. https://www.eff.org/deeplinks/2017/11/another-court-overreaches-site-blocking-order-targeting-sci-hub If someone were to try to prevent a patient forum from providing access to the flawed medical research that was harming...

Changing the entire purpose of a study from assessing the feasibility of conducting a trial to assessing the efficacy of an intervention in a full trial, would have to count as a substantial amendment. I'm not sure that would mean there should be more oversight than the two person sub-committee...

A short piece, not particularly relevant to us, although I thought it might be. They focus on potential COIs like funding from pharma, rather than ideological or profession-based COIs...

The livestream is available for rewatching now - check the video in my post above. It will be on their facebook page somewhere too.

It would require some sort of alien mind-control device. Or just for those involved to educate themselves. I'll contact SETI.

So true. We've created a society where the sick are expected to do as they're told by 'experts', even when the 'experts' are talking rubbish.

I didn't make it clear, but those figures were from a study on cancer patients. I haven't seen anything specifically on CFS, but I've heard from a lot of people about how the biopsychosocial stuff has led to problems in their relationships.