Discussion in 'General ME/CFS Discussion' started by maccas dad, Oct 28, 2017.
BBC news is talking about ME this morning at 9.50 if anyone is interested, cheers.
It starts at 9.50 am.
Get the message that BBC iplayer only works in the UK. But I'm sure it's great as usual?
Missed it! Will try and listen tomorrow on catch up.
Yeah, really good. @charles shepherd and Jen did very well. Charles brought up that some patients need tube feeding and he clarified that its not about being fatigued.
Also Charles was looking dapper in his pinstripe suit.
I have already viewed it on catch up. It is available now.
It was short and sweet with Dr CS and Jen doing a very good job. Astonishing that something so positive and accurate should be aired on the BBC. The tide must indeed be turning.
Just watched this via iplayer/channels/BBC1/schedule/today/news - need to fast forward to 233.48 on time clock. It’s the final item.
The PR and awareness being generated by Unrest is just brilliant and so impressive.
Both Jen & Dr Shepherd managed to say a lot in a very short space of time and get important points across. Very well done. Thank you.
Yes, 3 hours 53 minutes in.
Hopefully somebody can record the clip and save for posterity w as it's only available for a day on the BBC website.
Good work Jen & @charles shepherd !
That was unexpected and good to see! It must be confusing to the general observer if they see equally visible news treating ME/CFS like a very different illness. It's like they're talking about two very different illnesses. If our more robust medical inquiries continue to get more public spotlight like that, this very split narrative will have to break somewhere!
For those with access to BBC iPlayer the program can be found here :
It will only be available until 9am tomorrow (29th October 2017) so don't delay watching.
There is a lot of good stuff recently that needs to be saved for posterity on Youtube. Many written articles on news websites are saved for longer but I and many others try to save important articles on webarchive as they get deleted or link breaks after a few years. Webarchive does not archive videos unfortunately.
BBC deletes these from I-player a day after and I think people from outside UK cannot view it as well. Would be good to get wider viewership as well.
@garcia and @JohntheJack have recently recorded the EC talk onto youtube. Thanks guys
If anyone wants to take on the responsibility of automatically recording/ uploading any of the good videos on news websites that they see on PR to YouTube that would be most appreciated by the ME community.
That's a great idea @Yogi. It would be good to keep all the important stuff on one platform that's easy to reference .
I actually started downloading the video but stopped for a few reasons:
1. The interview was so short that it was bordering on taking the piss
2. You generally can't put bbc stuff up on youtube - they have algorithms to recognize their copyright. Sometimes it works, but most of the time it doesn't.
3. Its that time of the year again where everyone going on the bbc has to wear a poppy, or else. I refuse to bow to poppy fascism. They should have been wearing some kind of symbol for ME awareness. WTF has ME got to do with poppies???? (I don't blame the participants, I blame the BBC, it being the state-propaganda arm of this country).
4. All of the above mean not worth saving IMHO.
Excellent! Well done @JenB and @charles shepherd
Not wearing a poppy risks starting a completely irrelevant and distracting thing about poppies. It was right to wear a poppy for that reason if nothing else. I want what they had to say to be heard. Also CS and JB may want to wear a poppy for their own reasons unrelated to anything to do with the BBC and politics around poppies.
Perhaps someone else will save this somewhere. If not I don't think it's a problem; the main thing is if it changes public perceptions a little and more people watch the film.
No worries. I just put out the message to anyone who saw important good or bad video footage now or in the future.
I have heard of poppy fascism. I googled to read more about poppy fascism (sorry off-topic).
Interesting topic as it has a link to weapons and arms companies sponsorship of poppy appeal.
I kind of agree with ME symbol.
Anyway back to the topic - well done to Jen Brea for another good interview!!
Just watching now. 9.53- 9.58 Good to get on prime time BBC with a positive ME message. Pity they couldn't have taken a minute or two off the time allocated to coverage of boxing and allocate it to Charles and Jen. But that is the BBC. However I have friends and relatives who have already fed back that they saw it and it had an impact on them so gives me a good in to get them to watch the film on iTunes. Friend who came with me to see the film was both shocked and impressed so I now have a stronger ally.
Jen had about a 15 minutes interview on the World Service during the early hours a few days ago. Probably it was about 3.15 am I think. They played her recordings of her journey with ME and also her husband's viewpoint of her suffering. She explained how it had all started and how that had affected her, what her career had been and also how it suddenly changed after a virus I think (from memory might be wrong) and left her bed bound. Again they played her recordings of how this made her feel along with many other ME sufferers who I think were bed bound, from all over the world. She had met them through the Internet.
They finished by bringing her story up to the current time where she stressed her advocacy and they finished the interview with her on her condition now. It was excellent and not once did the interviewer who I think was Matthew Bannister, a very experienced BBC executive, go into physcological stuff. I was waiting at the end for SW to pop up and put a counter viewpoint but I am delighted to say that didn't happen. So 15 minutes was devoted to an accurate depiction of ME, very impressive from the BBC for a change.
The BBC world service interview aired at about 1:45pm in New York. Maybe they showed it a few times.
Thanks for highlighting this BD. The World Service is an excellent area of the BBC and reaches millions of people around the world so those 15 minutes will impact in countries that Jen won’t be able to reach in person. I will definitely catch up on this report soon.
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