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UK: advocacy/fundraising radio phone-in opportunity tomorrow (Weds 8th June)

S

Sasha

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If I were capable I'd be phoning into this thing and mentioning the Invest in ME rituximab fundraiser and the hot-news rituximab stuff and the MEA's Charles Shepherd's call for a big, multi-centre UK trial - brilliant awareness and fundraising opportunity, if they'll let you talk about it.

Remember, loads of PWME aren't even aware that research (or research charities) exist.

It's BBC Radio Bristol but you can phone in from anywhere in the country.

Bristol is one of our major UK cities with more than 400,000 people so that's a major audience.

It only takes one millionaire to hear you!

MEA on FB said:
AN OPPORTUNITY TO TALK ON BBC RADIO BRISTOL TOMORROW (WEDNESDAY) AND BE PART OF THE NAOMI WHITTINGHAM PHENOMENON

Patrick Hayes, from the Bristol ME Support Group, writes:

Following the huge response to their recent coverage of the ME, Radio Bristol are planning a phone-in on the illness this Wednesday (8th July).

Mum and I have been asked to take part, and the team are keen to hear from anyone else who would be willing to share their experiences. It doesn't matter where in the country (or even the world) you live.

Anna the producer says:

"If there's anybody that definitely wants to talk and share their story, they can email me their details and we can call them on the day- but there is also the capacity for them to call in themselves on the day.

"The number, for Wed between 9am and 10am, is 0345 9005 949 and we'd be happy to talk to as many people as possible. They are more than welcome to text 81333 starting their message with the word BRISTOL or they can email John Darvall at John.d@bbc.co.uk or me at anna.love@bbc.co.uk"

If you wish to hear the item they broadcast last week, you can do so here. I have found both John, the presenter, and Anna, the producer, to be extremely sympathetic.

http://www.bbc.co.uk/programmes/p02w3d9d
Click to expand...
 
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eafw

eafw

Senior Member
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Clean link to the BBC programme, worth listening to it was very good

http://www.bbc.co.uk/programmes/p02w3d9d

Advice if anyone is going to call in tomorrow (Weds 8th): it is best to pre-prepare with some notes and a couple of quick and easy points.

Avoid long speeches about things that will be meaningless to anyone outside the ME world, keep any science or medical jargon simple as possible. Be diplomatic (OK to have a go at the failings of the NHS as an institution but be careful about slagging off individual GPs and professionals that could be on our side if better informed).

Also, rehearse what you want to say. The presenters - however sympathetic - will put you on the spot and it's very difficult not to um, er, um ... waffle... er, in that situation.

People listening will take away soundbites, and repetition is fine if it makes the point.
 
S

Sasha

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Good points, @eafw - what we want out of a platform is for people to come away with an understanding that (a) this is a devastating organic disease and (b) that they can do something to help, BY DONATING TO OUR RESEARCH CHARITIES! :angel:

And the rituximab story is a very helpful, positive story and it's news, which journalists always like. We don't want to drive people away by ranting against injustices that we won't have time to explain properly and will just sound weird to the uninformed listener. Positive, positive, positive... we're recruiting.

People want to jump on a bandwagon that isn't just rolling but that is winning. Our bandwagon is now winning and people can donate to it (I've really murdered that metaphor). :nervous:
 
S

Sasha

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I caught the last ten minutes and it was top-notch. Patients put the reality of things across superbly. Very sympathetic hosts. Sonya Chowdury of AfME was also on (I think AfME are Bristol-based). The patients made lots of calls for more research but I don't know if anybody named a research charity during the earlier part of the programme. Hope they did!

I'm hoping it will be available on 'Listen Again':

http://www.bbc.co.uk/programmes/p02v01vk

I heard Naomi make some comments and she said she wasn't well enough to sit and was lying in bed as she spoke. I hope that helps people 'get it'.

Superb job, Naomi, and 'V' (?) from Montpelier and everybody else who took part. Looking forward to listening to this.
 
S

Sasha

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Messages
17,863
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Oh! Might be still going on!

MEA on FB said:
Just to let everyone know, we were supposed to be on but they ran out of time, however they have called to say the response has been so great they are carryin on after 10.30! so we should be on then, we will see!
Click to expand...

94.9 FM, folks, or you can hear it online at the link above.
 
Alison2

Alison2

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Just tuned in real quick - just to see - cant cope with radio - they were still talking about me.
they heve had a massive response. The guy said it has gone viral (whatever that means)but think it must be good!
 
S

Sasha

Fine, thank you
Messages
17,863
Location
UK
Alison2 said:
Just tuned in real quick - just to see - cant cope with radio - they were still talking about me.
they heve had a massive response. The guy said it has gone viral (whatever that means)but think it must be good!
Click to expand...

The 'viral' thing was a video by Tom Whittingham about his sister Naomi who has ME and was on the programme. Do a site search on his name and you'll find it - brilliant video!
 
B

Bob

Senior Member
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England (south coast)
S

Sasha

Fine, thank you
Messages
17,863
Location
UK
Bob said:
John Darvall has posted a brief update blog. They're going to continue to feature ME in his radio program over the coming weeks. He's been moved by the comments placed on his previous blog post: http://johndarvallblog.com/2015/07/16/what-m-e-an-update/
Click to expand...

This guy is great! I think his new piece deserves a new thread because he's asking for our help on content. I'll start a new thread.

Thanks, Bob.
 
Alison2

Alison2

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44
Location
uk
Just seen on twitter that he has nominated charlotte leslie , mp for bristol north west, and steve lefevre ,
radio bristol breakfast host , to a me chilli challenge stand off !
 
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