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Interviews on ME on Radio Solent

Discussion in 'General ME/CFS News' started by MeSci, Feb 20, 2018.

  1. MeSci

    MeSci Senior Member (Voting Rights)

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  2. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    starts around 2.06 (its about an hour long)
    Have just listened to this; it featured a mother and daughter (who has ME) I couldn't make out the Drs name (Dr Luis Nacul thanks @Cheshire ) who was very good and well informed, they also mentioned the PACE trial debate and briefly talked to Carol Monaghan.
    Also Fern Balch who is a producer at Radio Solent who had ME as a child (now in her 20s) but says she still has to be careful. She says she wants to get more involved in the current campaign having seen Unrest. There was a clip from the film and a personal message from Jen Brea.

    Well worth listening to; covers most of the important issues.

    eta:


    They are going to do a longer program in the next couple of weeks. (Ask the Expert program)
     
    Last edited: Feb 20, 2018
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  3. Cheshire

    Cheshire Moderator Staff Member

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    Dr Luis Nacul I guess. He works for the ME UK Biobank.
     
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  4. chicaguapa

    chicaguapa Senior Member (Voting Rights)

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    Hi. I was the mum on the radio programme and Emma is my daughter with ME. It was Dr Luis Nacul who spoke. I'd offered to find an expert for them as originally they'd asked someone whose view I wasn't supportive of and I didn't want to feel like I was going to have to contradict what they said on air. ;) I thought he was great and emailed him afterwards to say thank you.

    The producers said they'd never had so much engagement from the public and so many calls from listeners, so they got a real sense of how many stories there are out there that needed to be told.

    Our friends and family really enjoyed it. Despite it being all I've talked about for 2 years, I think it validated a lot of what I'd told them so I hope it had the same effect on other listeners. They also appreciated the positive vibe, which I know helped Emma too. I guess my only worry about it was that all the positivity trivialised the seriousness of it but I hope it was clear that the prognosis for children is different than for adults.

    I haven't been given a date yet for the follow up. They said they'd let me know and were hoping to get Dr Charles Shepherd for that (who has already said he'd do it).

    [EDIT] Also wanted to add that it came about because I'd contacted Radio Solent with a press release for a screening of Unrest that I'd arranged and it grew from there. Luckily my brother-in-law works in PR so I'd had some help with that.
     
  5. TiredSam

    TiredSam Moderator Staff Member

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    Hi and welcome :)
     
  6. Daisybell

    Daisybell Moderator Staff Member

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  7. Allele

    Allele Senior Member (Voting Rights)

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    Bienvenida, @chicaguapa, and thank you for pulling all those pieces together. How great to hear about the unprecedented participation from the public, and the intention for a followup. Amazing!
     
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  8. Nellie

    Nellie Senior Member (Voting Rights)

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  9. Trish

    Trish Moderator Staff Member

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    Hi @chicaguapa, welcome and thank you for doing the program. Well done to you and Emma.
     
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  10. Amw66

    Amw66 Senior Member (Voting Rights)

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    Just caught up with this. Well done to both Emma and her mum. Unflappable and concise . I hope the school unrest screening goes well.
     
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