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Indeed. Might it be useful to send a brief message from the committee, thanking Sonya and reiterating that they're always welcome to post early-stage proposals for new materials or projects on the board? We tend to be direct with our criticism, but they do get a lot of experienced people working...

Do people think we could potentially collaborate on a specific project, as long as it was understood from the outset that the S4ME name/logo would not be displayed on the material or in publicly-available descriptions of it, unless we were given time to put it to a vote after completion...

I can well imagine, especially since the best they could probably say about treating ME/CFS is that there isn't any evidence and there aren't any experts. Hopefully, though, an evidence base will begin to build about feeding people with very severe illness. It would be good if the hospital that...

I wrote mine on a word processor document first, because it always takes me a while and I'm prone to closing browser windows by accident and losing stuff! From memory, the three boxes where you give most of the freeform feedback are on one page, so it's easy to see the questions. They are: 1...

An ME charity should give due respect to a collective response from S4ME, as should researchers. We've earned that.

I think this is a really good idea. As smallish research teams won't necessarily have the skills and resources to set up a new forum, I wonder if it could even be something S4ME might offer to host? If the admin(s) who liaised with them about what they needed and did the setting up were paid...

I'm not sure of the law, to be honest, but I'd be a bit surprised if it weren't an issue to receive something of more than token financial value. I know market research incentives don't have to be declared for income tax. I used to do a lot of it, and once received a £500 incentive plus peak...

This is fantastic news. Thanks so much to @Trish for all her work on it, and to Sonya for listening so carefully.

I agree, but it also needs to be clear that being paid would mean some people couldn't take part. I'd have to report the additional income to the benefits agency so they could deduct it from my income; I did that once, and they stopped all my benefits for five months while they investigated...

This. And this, only replace "a more moderately affected pwME" with "an autistic pwME". Probably my main fear! I worry particularly about verbal articulacy; it's not invariably terrible, but I've always been better on paper. So—what would help get over some of that? 1. Not having to come...

Nope! Same way they haven't looked at why it's practically impossible at times to walk through a doorway without crashing into the frame. But I think if we ever get our movement study, things like that will be revealing. I doubt the phenomenon itself is entirely unique to ME. It's probably a...

I get hoarse if I talk a lot, but I don't think it's much to do with my voice. It's more likely to be the loss of fine motor control and co-ordination I develop due to fatiguability and/or PEM. I've the same problem with breath pressure on my whistle. Different notes need different pressures...

Absolutely. Looking at the safety information in BNF, it's not something you'd take because somebody said it might work, possibly.

Good topic, @Ravn. One way forward might be to replace the initial reference to fatigue and PEM in the introduction with a phrase I nicked from one of @Trish's posts: fatigue, rapid fatiguability, and post-exertional malaise (PEM). It's neat because it challenges people to see there's a...

It's not exactly unique to autism, either!

You'd think Open Medicine Foundation might fund some of the Phase I/II trials. Is there some reason why they don't?

Maybe, but it's possible the answer would be "That's commercially sensitive information"!

I suspect that, because Workwell carries them out privately for individuals needing evidence for insurance or pension claims, many of the results aren't published. We would probably only hear about those run as part of trials.

Sounds awfully like Daffy's Elixir, doesn't it. That was advertised for: The Stone in Babies and Children; Convulsion fits; Consumption and Bad Digestives; Agues; Piles; Surfeits; Fits of the Mother and Vapours from the Spleen; Green Sickness; Children's Distempers, whether the Worms...

This project looks great, @Chris Ponting, it's amazing the group is so committed that they're prepared to do this work after all their other work. I always find papers hard to read because I can't grasp maths. It did strike me, though that inactivity looks a bit over-stated. There might be...