For non-UK people who might not understand the context here, this review was broadcast on one of the BBC's national radio channels, 5 Live, which is a talk radio station, covering news, current events and sport. This was part of a daytime regular, weekly, film review section. So it's pretty mainstream in terms of our radio.
Haven't listened yet but should be interesting: http://www.bbc.co.uk/programmes/p05j3qr6#play Edit: Jen's bit starts around 2:20.
I'm not sure if this already been posted. https://www.youtube.com/watch?v=7UVmIc6FKnE I'd like to email my MP again and send this link, but I would need help trying to compose it, I'll start another thread for this
Where should I write a post asking for help composing a letter? I can't see a General ME Discussion forum. Everyone is probably too busy anyway, but I would like to remind my MP about the film and respond to his reply (to the EDM request I sent through #MEAction) His researcher is so far out of date, he doesn't even know the PACE trial data were released, and knows nothing about recent NICE events.
If the Advocacy forum was open then I'd suggest Advocacy Projects and Campaigns but as it isn't I'd suggest Off-topic Chit Chat for now. We can move it later if need be.
Bit of a tangent. . . I'm hoping this and other positive media stories will reach Martine McCutcheon. As a celebrity and sick person she has done such harm to the community IMO Would love to see that rectified and some celebrity somewhere find this to be a just and worthy cause to bring into the spotlight.
the Panel includes Prof Chris Burton who is an MUS proponent and has a paper with Per Fink so the debate should be interesting especially with Per Fink cameo in the film..........
The Norwegian ME Association - Rogaland County - is hosting 2 screenings of Unrest in Stavanger november 16th. A cinema auditorium is booked with 160 seats. The plan is to fill it twice in one evening. Professor Kristian Sommerfelt (Haukeland university hospital) will come to answer questions and provide additional information about ME. He is a paediatrician and neurologist with over 25 years of experience on ME. He was in the panel to Unrest's Europe-premiere at the film festival CPHDOX in Copenhagen. Free for members of the ME Association, health care personell and politicians (for others: 100 NOK) Tickets/registration Facebookevent
https://www.actionforme.org.uk/news/unrest-screening-plus-q-and-a-in-bath-on-14-november/ tickets are free Q&A panel to include Sonia Choudhury Also Jan Daniels Clinical Psychologist with experience in NHS including CFS//ME Also patients on the panel according to the update Being held at School of Psychology
Anyone know who the patients on the panel are? Was about to sign up but already full according to afme.
It's Jo Daniels, who has been doing poor CFS stuff for years. I wonder who organised this, surely even Action for ME wouldn't choose to have her speaking (I really shouldn't assume that... AfME consistently astound me)?
Thanks for correcting the name I was doing it on my phone from memory. Hopefully whoever the patients are will be up to speed with other panel members background will be interesting to get any feedback from anyone present to what extent there is pushback from other panel members against any attempts to justify or promote the BPS agenda.
https://www.actionforme.org.uk/news/join-us-for-me-event-at-the-royal-free-hospital/ Possibly now fully booked I was going to add to the 14 Nov AFME Bath thread but could not work out how to edit the title sorry Anyway possibly worth own thread as Sonia Chowdhury of AFME will be joined by S Holgate on the panel. Note he is not described as chair of CMRC but it does mention he’s in immunology
That's an interesting twist. But then I noticed that AfME were partners of some sort (sorry already can't remember specifics) on the Unrest site. Holgate & Chowdhury trying to shine up their image in the ME community. I'm inclined to not be in a great hurry to be forgiving of people who have been so willing to ignore PwME in order to have status with the establishment. They may have thought that they were even doing right but the tide of opinion now is such that it's easy to side with patients since that same tide is swelling and knocking the BPS off it's feet. Things will be as they will be and these two may be absorbed into the flow of people who are taking note (who previously knew nothing) and create a narrative that they were the good guys all along. But I think there are people (other than me) who will know different going forward. I hope someone can report back on the overall response and to the panel afterward and that SC & SH will do right by our community where they've failed previously. For me that means NO waffling. NO weasel words that can be interpreted with ambiguity or comments that sound good but are hollow of meaning.
I've totally given up on Sonya and Holgate doing the right thing. They have a clear responsibility to speak out against PACE, the way results were spun, and the way critics were smeared. I don't think that there's much chance of them doing that.
