Search results

A certain level of tolerance and even encouragement of the psychosomatic paradigm is beneficial for government entities. But some of the people creating and selling those theories are true believers, rather than just savvy salesman. When those true believers are given too much power, they...

Their twitter account is https://twitter.com/BristolCCAH It looks like they've been supporting Crawley's quackery for a while, and it's pretty well in line with most of their other projects.

Agreed. Most remaining members of the MEGA PAG expressed a lot of enthusiasm about MEGA. Which would suggest that some of them are perhaps not the most well-acquainted with the politics or scientific concerns around ME/CFS research. I'd rather we have patient representatives who really know...

Nope. Bristol just seems determined to morph into a blatant quackery-oriented university :-P I'm sure they can use the Lightning Process to change the outlook of any students concerned about the quality of their education.

Hasn't AfME's ethos already been soundly rejected with detailed explanations by many people? What exactly are you calling for which does not involve censorship or banning? An official public denunciation from the forum? How many other organizations would also require an official denunciation?

Refusing treatment should never be pathologized. It's the explicit right of all patients, as NICE keeps emphasizing while trying to dodge the blame for the medical abuse resulting from its guidelines.

That's the definition of illegal, so there's nothing wrong with your translation of it :-P

I don't think "relapse" is completely accurate, but only because a relapse is more serious than PEM (usually), so I don't find it objectionable or offensive at all. I prefer "exacerbation" for accuracy, though the PEE acronym is problematic. But perhaps "post" could be replaced with something...

And we shouldn't sink to the level of silencing dissenting voices. AfME might be a threat to ME patients through their habit of supporting awful research and quacks, if they haven't learned anything from it, but their presence here is no threat at all. Even if they say something offensive or...

Contrary opinions are intolerable?

Well we can't make AfME stop existing, so we might as well try talking to them in case it helps their understanding of the disease and scientific concepts :rolleyes: And if they have a presence here, it's a lot harder for them to claim that they don't know what's going on or what patients are...

IV bicarbonate can help when used in hospitals, so people drink it on that basis. But it's very unlikely that drinking it has any effect. My GP is a complete moron, so I wouldn't bother mentioning it to her, or anything else - I'll stay home unless something's bad enough to go straight to the...

The gold standard would be testing CSF lactate levels, since that tends to be chronically elevated if there's a problem.

This is the UK site for home testers of the brand that I use: https://www.lactatelevel.co.uk/contents/en-uk/d27_blood_analyzer.html It's also a typical test done as part of blood gas analysis in a hospital or fancier clinic, though that would use a venous sample. It's one where they can get...

Yup, mine was elevated too. I have a home-tester now, and it's typically elevated in the evening if I've been too active, and is often followed by a crash to some degree. I did a 3 minute exercise test at home, and instead of steadily dropping afterward, my lactate continued peaking for an hour...

The citations in the wikipedia article relating to pseudoscience, scientific criticism, and lack of efficacy would be a good place to start: [9] Thyer, Bruce A.; Pignotti, Monica G. (2015-05-15). Science and Pseudoscience in Social Work Practice. Springer Publishing Company. pp. 56–57, 165–167...

But that is what scientific research does for us. Instead of relying on anecdotal evidence or case reports, the broader picture is looked at with certain methodologies in place for reliability and consistency. The impression I'm getting is that such scientific evidence shows that NLP is not...

Yeah, that wouldn't be too bad. Unfortunately the NHS doesn't seem interested in providing that unless it comes with a side of BS or psychotherapy :-P

It might help to focus on describing what you can and can't do, and the consequences it has, both regarding symptoms without one and regarding your limitations in what you can't go out and do. Eg, if you have to stand more than X minutes, you typically get lightheaded. Or if you walk more than X...

We end up with some very good ones too :-) Which is why I wouldn't have a blanket exclusion.