BBC Radio Scotland - Friday May 12th at 10.45am onwards

BBC Radio Scotland - Friday May 12th at 10.45am onwards

There will also be a phone in after the main discussion on ME/CFS

More info here on MEA news round-up:

http://www.meassociation.org.uk/201...scotland-here-we-come-again-11am-12-may-2017/

 

Listening to it now, great work @emsho and @charles shepherd

 

Thanks Andy

I'm afraid the ME discussion kicked off at 10.30am today - and I didn't get any prior warning that my interview was staring early.

Anyway, we had plenty of good quality calls and the ME/CFS segment carried on for just over an hour.

I've asked Tony if we can record the entire programme from the BBC playback version.

CS

 

Reply available here:

http://www.meassociation.org.uk/201...is-morning-listen-again-facility-12-may-2017/

 

Great idea to preserve and archived version of things like this. It can be really frustrating suddenly realising an old BBC radio show had a great relevent quote, but that it's now impossible to find a copy of.

 

direct link
http://www.bbc.co.uk/programmes/b08ns5wx#play

eta: starts 1.36

 

Just listened to this; very good (apart from the last 'it's all Lyme' caller).
@emsho - was nearly in tears listening to you. You are doing so much; just remember to look after yourself and we are all here to help in any way we can.

eta: sent the link to my usual list of media peeps and asked why Scotland appear to be the only people wanting to know the truth in the UK.

 

@emsho your interview brought tears to my eyes. It just hits home when you hear others describe how devastating ME is. Thank you for all you are doing (and your mum). I do hope you're OK after all the effort.

 

@AndyPR @slysaint @dangermouse Thanks, it was my first radio ever interview. I was so nervous I was shaking. Brain fogged out a few times, but hopefully only pwme can tell! Apparently we were also on Radio Scotland at 8;30amish and 4:30pm so think Scottish peops will be sick of hearing our voices. We got a few minutes at about 6:45pm on the news but darn selfish NHS hackers stole our spotlight .

 

@emsho You was brilliant! I'd have been the same, well done and huge thanks once again. Great that you got on news too

Thanks @charles shepherd too

 

Hi @emsho, I've just listened. Thank you so much to you, your mother and @charles shepherd.
Emma, you moved me to tears too - in a good way. You were very clear and spoke brilliantly. The fact that you had a bit of a brain fog hesitation is good - it demonstrates the reality of the illness.

Just wish the English BBC would cover ME so well.

 

Me too. Too many influential strings being pulled I fear. Best hope probably is that other countries' media continue to pick up on it, and show the BBC up for the pawns they seem to be. I used to have such (blind as it turns out) faith in the BBC's talent and diligence for real investigative journalism ... what a joke.

 

I can't believe they are telling people that they shouldn't look on the internet. I never knew. That is sickening. They must really hate us.
If I hadn't found this site I have no doubt that I would've committed suicide. The internet help me way beyond any medical professionals did. I'm very worried for patients who are newly diagnosed if these are the guidelines drs are currently being given.

 

I would very much encourage this, with the only comment to add that local news will want to focus on the local person and therefore are likely to want to have a photo alongside your story.

As an example. Currently, in my life outside the ME bubble, we are fighting against enormous flat repair bills that our maintenance company are trying to pass on to us, in the region of £30k+ per flat, despite the fact that it was their lack of maintenance that led to this state. We leaseholders have had quite some success in getting into the local media, by presenting the people affected by this issue, but every story they have run has been accompanied by a picture of one of us. It's taken time but the story has started to seep into the awareness of regional news as well now.

I think there could well be a lot of mileage in trying to spread out collective ME story locally, the drawback can be that it comes down to fewer individuals, whereas a national effort can tend to spread the load wider.

@emsho , once you have had the chance to recover from your recent efforts, could we ask you to try and distil what steps you took to achieve your success into a number of bullet points? Where we have success, we need to try and learn as much as possible from it.

 

Maybe the various regional support groups might be best placed to do this?

 

I agree this could be helpful. I note that you said your mother did a lot of the work on this. I wonder whether she would feel like joining PR and sharing her experience too.

 

Maybe. Though I would understand if a support group may not want, or be able, to make the move into advocacy.

 

This does make sense of course. It's a powerful aspect of human nature to feel a much stronger sense of credibility and empathy for someone's reported experiences, if you can see and/or hear them.

 

talking of which...........an image search on Simon Wessely now brings up your avatar pic

 

Ahahaha. Poor Kiefer, to be associated with that man.