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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 very, very tiny number of cases that result in death, with many of those being suicide. Do we focus on extreme examples to make a point, or will that...

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 educational intervention we need more 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 community.

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 in the final version. Ideally, we'd have included more people in the editing phase to ensure we did have a consensus not only between the key...

Not quite. Many advocacy groups produce Parliamentary briefings. But in ME circles, we're very tied up in trying to fund biomedical research, so we often overlook things like this. At the Parliamentary screening of Unrest, the subject was brought up, so the four charities present at the...

It's a Sisyphean task trying to crowdfund biomedical research. Governments can afford the studies much more easily. It's better to shame/educate politicians into acting than slowly trying to self-fund research over the next 30 years...

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 something to do with a particular (ostensibly post-viral) subgroup?

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 trying to say something like 'we think it's biological although we have no absolute evidence of aetiology'. They were trying not to overcommit where...

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 between those official meetings (via email, etc).

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 research we can muster. The reason being that governments have far more resources to contribute than charities. Charities shouldn't be required to...

Oops! Our posts crossed. This, too. HADS is a problem, as is the Chalder Fatigue Scale and similar questionnaires which supposedly capture 'mental' fatigue as well as physical fatigue.

I think part of the problem is the questionnaires that always get used. They claim to be measuring certain aspects of 'fatigue', but psychologists interpret some answers as signs of depression. I think it's probably also the case that a person may have one or two symptoms that overlap with a...

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 updated. Overall, I'm happy with it. I'd prefer the recommendation to drop GET AND issue a safety warning about it (I suspect that was one of the...

I'm not sure. The areas affected appear to correlate with neurocognitive complaints (slowed activity when completing tasks, for instance) and fatigue, I think. You'd really need a neuroimaging expert. But there are lots of SPECT and a few MRI studies too. The main contention seems to be whether...

I'm very wary of neuroleptics too. Similarly, most antidepressants don't seem to work for us too. I think neurotransmitter problems are probably downstream of other issues (neuroinflammation, for example). I'm not sure what a good alternative is. It's ultimately up to you. Maybe you can find...

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) statement. It gives the impression that what was said in Parliament was scripted by four charities. It was not. Caroline Monaghan was not reading from...

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 of attack. I don't think it's me who is being harsh. They attributed malicious intent, and a desire to hijack the publicity of their conference, to...