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Oh! Sorry, I completely misunderstood you. That's a nice idea. I'll add it to my OP.

Not bossy at all, please don't worry! :) In terms of being noticed, would it be OK to keep it in this general news section for now? The In Memory section seems fine for static things but as a place to announce events, it didn't really seem quite the right place. Although I use the forum by...

Doh! Weds 11th (i.e. tomorrow). Sorry! I've corrected the title.

I think it needs a new thread to bring attention specifically to the one-minute's silence, since it's time-sensitive and many people may have forgotten it and likely won't read a new message on an existing thread. Would it be OK to keep this thread separate, please? After tomorrow, I expect it...

@Jo Best, do you know if there's an early-bird DVD link yet? I find the site a bit hard to navigate.

Bob's funeral will begin in Feltham, London, at 2pm British Summer Time on Wednesday and many of us are joining in a one-minute silence to remember him at that time. We invite you to join us. People overseas are welcome to join in, either at the same time (this will show you when it's 2pm in...

Great that Michael Sharpe is drawing people's attention as much as possible to David Tuller. :thumbup: Let's hope people follow all those links and study up. :)

Actually, that was just laziness on my part! :)

Yes.

There isn't a 'like' button big enough for this. I'd rather see you shut down than carry on like this, @Action for M.E. You're hurting patients and yet you seem absolutely blind to it. We can't understand why. So, why?

I know you feel uncomfortable taking personal PayPal payments, which I understand, but have you seen this?: https://fundrazr.com/pages/paypal If your concern is about transparency, then if the crowdfunding tool shows the total raised, you could donate that to your own UCB fund and get them to...

This is exactly it. Shouting and yelling and expressing anger - especially in a UK culture where that's seen as a breach of manners and 'not what we do' makes that anger less effective, not more, when you're labelled as a 'mental patient'. Catch 22 is exactly right.

@Mfairma, I completely understand your frustration and I think this is an important issue that deserves its own thread, but: But if you lived in Belfast in the UK in the 1970s, tarring and feathering was alive and well, thanks to the IRA...

In my 'I'm rich!' fantasies, @dave30th, I not only pay the rest of your crowfund for the year but throw in a spa break! :)

:arghh:

Any kind of timescale for the notebook? :whistle:

I see that Dr Phair has kindly answered comments from patients on Cort's article (I haven't read them yet): https://www.healthrising.org/blog/2018/04/03/a-metabolic-trap-for-chronic-fatigue-syndrome-me-cfs/

On the one hand, I'm pleased that they were thinking in terms of submaximal testing (presumably to protect patients) but how illogical to put patients through this kind of fitness testing at all (and have them do the six-minute walking test) and not 'burden' them with actimeters.

That's weird (that a test could be copyrighted). But you'd think that they could at least reference the equation and that the equation (and how it was derived, etc.) would be in a peer-reviewed journal - or at least something that people could access and read. All very odd.

@Lucibee, is it possible that they're measuring something other than VO2max (sorry if that's a stupid question - I can't remember much about this stuff!).