The new briefing is here, by the way: http://www.meaction.net/wp-content/uploads/2015/05/ME_Briefing_21_June_2018.pdf
We've discussed the death thing at great length. The tricky thing is that we don't have concrete numbers, and even if we did, it's likely to be a...
This is all really important. One of the last groups to do a big, worldwide tour selling their model of ME was the BPS crowd. This is the kind of...
Thank you! It's how things should be, all the time! People want to feel heard (I know I do!). We also have a duty to do right by each other as a...
You're right, though. I was given the final document to check for typos, but by that time the text was set in stone. @JenB also didn't get a say...
Not quite. Many advocacy groups produce Parliamentary briefings. But in ME circles, we're very tied up in trying to fund biomedical research, so...
It's a Sisyphean task trying to crowdfund biomedical research. Governments can afford the studies much more easily. It's better to shame/educate...
I think Ramsay and Hyde noted this too. Epidemics only seemed to have more women because of where they struck (schools, hospitals). Maybe this is...
Yes, we're aware. It's one of those weasel words that sometimes creeps into things. I think whoever wrote that hadn't thought it through, and was...
Maybe they know PACE will no longer fly?
You're assuming Forward-ME members don't communicate outside official meetings. It's very possible that most things were agreed in the time...
In general, this seems like a good idea. Getting ME listed as a 'neglected disease' would be more powerful than all the charity-funded biomedical...
Oops! Our posts crossed. This, too. HADS is a problem, as is the Chalder Fatigue Scale and similar questionnaires which supposedly capture...
I think part of the problem is the questionnaires that always get used. They claim to be measuring certain aspects of 'fatigue', but psychologists...
More recent studies put co-morbid mood disorders at about 40% in ME, which is comparable to other chronic illnesses.
I think this looks like a slightly older version of the file (a few typos remain, including one I flagged specifically). I'll see if we can get it...
I'm not sure. The areas affected appear to correlate with neurocognitive complaints (slowed activity when completing tasks, for instance) and...
I'm very wary of neuroleptics too. Similarly, most antidepressants don't seem to work for us too. I think neurotransmitter problems are probably...
I'm glad they removed it. This is all such a pity, because I do respect their work. I think this is one of the problems with IiME's (original)...
I don't really respond well to being told my concerns about the accusations in their post were 'a joke' and 'embarrassing', plus the general tone...
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