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I wonder why a more solid reference isn't given for it?

The donation link to support David's work again (I'll put this in my OP, which I should have done from the get-go): https://crowdfund.berkeley.edu/project/9730/donate

Excellent. I especially like the threat to report them to the Charities Commission if they fail to comply (though I'm actually amazed that the SMC are a charity - but it is).

Loads better @Andy, thanks - I put the YouTube link into my OP.

We crossed. I also hope we can table this discussion without further rancour! We're (almost) all patients here, and we can surely discuss things without insulting and goading each other.

I can understand @Bill's reaction to, and concerns about, the critical description of Dr Lloyd's demeanour. I can also understand the point of view of people who think it fair game. I must admit that the material surprised me somewhat, and it didn't sit comfortably with me because it seemed to...

Doh! Thank you. Fixed.

Well, I just watched that and it was superb. I cried when you cried, @dave30th! Seriously, I'd pay thousands for something of this quality and with this content to be shown in the UK (apart from the guy saying CBT/GET works for some people but not everybody! o_O). That PWME Susan (?) is a...

Latest blog post: Read the whole thing at: http://www.virology.ws/2018/04/04/trial-by-error-a-terrific-piece-about-me-cfs-on-australian-tv/ I highly recommend watching the video, which is a lot easier to watch on YouTube (thanks, Andy!) - I couldn't control the Oz TV one: In the interview...

Thanks, @Hutan. I've also deleted a couple of my posts that now seem superfluous, given that the ones they responded to have been removed. Thanks for your work on this thread. :thumbup:

But what would the rationale be for that? The other charities recognise that NICE needs to be pressured to move fast to change its recommendations. They don't see NICE as some sort of infallible font of all wisdom. Why would AfME stick to NICE's recommendations when it's so clear from the...

On p.1 of the supplemental material that accompanied the Chalder paper (where the fitness test results were 'reported', barely) there's this info about the test they actually used (which wasn't Petrella but apparently similar)...

Thanks for posting, @Eagles, good to know about this. What do you think about maybe changing the title of the thread to 'Channel 5 News interview tonight with family of the late Merryn Crofts (young PWME)' or something?

Interesting - my experience is of it being very top-down and I hadn't considered the reverse. In the case of talking about PACE, it seems unlikely that a PR person would be controlling the narrative for a charity but if that's so, then that's what we need to know, not Clare's salary. I also...

I think that's fair enough. My concern here is that Clare may have been pushed blindly into this without realising that there were important issues about PACE to be understood. But after all the discussion on this thread, ignorance of the issues would now not be a tenable position. My hope...

I certainly agree that each of us has to take responsibility in life for what we say or do (regardless of whether we're getting paid for it!). I hope Clare is considering this. But our problem here isn't Clare, who is just a spokesperson. Our problem with AfME is whoever in AfME is driving...

I'm sorry, I don't understand your point (the joys of the internet!). I know Clare is head of comms. That doesn't mean that she has the freedom to say what she wants. We can certainly question her about what she says but I think we have to appreciate that it's unlikely to be her who is providing...

@large donner, although we see some aspects of this differently, I think you raise an interesting question about who funds AfME (if anyone - I don't know whether they have large donors or just get funding from individual patients). Would you like to start a new thread on that? I'd like to keep...

I see Cort is checking with Phair whether 23&Me data count (I thought it wasn't the full genome).

@Mattie, do you think it would be worth adding to your title, 'Robert Phair seeks data from ME/CFS patients who've had their genomes mapped'? Personally, I'd like to know more about his project before I sent him anything but anyone who gets Ron Davis's attention is interesting. Another one for...