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The ME Show

Discussion in 'General ME/CFS News' started by Gary Burgess, Apr 21, 2018.

  1. cyclamen

    cyclamen Established Member (Voting Rights)

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    :thumbup: Thank You so much for the interview with Jane Colby from TymesTrust. It was so nice to hear her speaking. Until now I was only in contact with one of her helpers, also a very kind and helpful lady. We would need someone like TymesTrust in Germany too - (and a Dr. N. Speight, there is not even any german doctor for children with ME)
     
  2. Ravn

    Ravn Senior Member (Voting Rights)

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    Thanks @andypants.
    I use the iTunes desktop app for Windows 10 and have finally figured out that you have to select Show in Store > The ME Show > Ratings and Reviews > Write a review.

    Frustratingly it's then impossible to tell if your rating and review actually went through because no reviews or ratings are displayed in the app (even though there's a space for displaying them) and you don't even get a message of any sort saying rating received or similar.

    Incredibly annoying app.
     
    alktipping and andypants like this.
  3. Gary Burgess

    Gary Burgess Established Member (Voting Rights)

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    Morning all. Episode 5 of The ME Show is now live.

    Something a bit different this week. I speak to the inspiring Michelle and Nigel Henshaw about their Music4ME project which has collaborated with people around the world who have ME to showcase their music and poetry.

    Michelle, herself, has ME and I know it's taken an awful lot to get this album of work together.

    Hear more about her story and Music4ME on the podcast: www.meassociation.org.uk/podcast
     
    ukxmrv, oldtimer, TakMak and 21 others like this.
  4. dangermouse

    dangermouse Senior Member (Voting Rights)

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  5. Gary Burgess

    Gary Burgess Established Member (Voting Rights)

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    Morning all.

    Episode 6 of The ME Show is out today, featuring this forum's very own @Trish who speaks openly and honestly about how both she and her daughter are living with severe ME.

    You can listen at www.meassociation.org.uk/podcast

    I thought it a very powerful listen.
     
    ahimsa, Keela Too, Sarah and 30 others like this.
  6. It's M.E. Linda

    It's M.E. Linda Senior Member (Voting Rights)

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  7. Hutan

    Hutan Moderator Staff Member

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    You are amazing @Trish, and Hannah too. It's an honour to know you.

    Thanks @Gary Burgess for the episode. It was very moving to hear Trish speaking.
     
  8. dangermouse

    dangermouse Senior Member (Voting Rights)

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    I'm really looking forward to this show :thumbup:
     
  9. Sunshine3

    Sunshine3 Senior Member (Voting Rights)

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    @Trish just listened to interview. You sound like an absolute lady, so lovely to hear your voice. My heart goes out to your daughter Hannah (such a beautiful name) I truly hope some treatments will be found that will allow her to experience more of life and the world. She sounds amazing. Her resilience is remarkable as is yours Trish. x
    Thanks @Gary Burgess , what a voice you have. A lovely gentle tone, I really enjoy your shows!
     
  10. Skycloud

    Skycloud Senior Member (Voting Rights)

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    Thank you again @Gary Burgess another really good episode, you're doing a great job. It's one to bookmark for sharing about what this is like to live with. I'm rather fond of the intro music now.:)

    Thank you too @Trish :hug: (had to hug you after hearing you speak) and thank you too to Hannah for allowing you to include her experience in the conversation. Everything you said was brilliant.
     
  11. NelliePledge

    NelliePledge Moderator Staff Member

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  12. dangermouse

    dangermouse Senior Member (Voting Rights)

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    Really interesting interview with @Trish

    Was lovely to hear Trish speak.

    Great show.
     
    Marit @memhj, Hutan, Inara and 11 others like this.
  13. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Great podcast episode (haven't listened to all episodes yet, but really liked those I have listened to so far). Thank you @Gary Burgess
    I so enjoy your posts here on the forum @Trish
    It was nice to hear your voice and get to know you a little more. I found myself nodding a lot while listening.
    Please say hi to Hannah :hug:
     
  14. Trish

    Trish Moderator Staff Member

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    Thank you lovely people for you kind responses.

    It was a strange experience - I have never done anything like this before, and don't intend to again. I found it stressful in anticipation of the interview, and stressful waiting for the podcast to go live - it was recorded about a month ago by Skype with me lying in bed.

    Doing the interview was fine - @Gary Burgess is so lovely and put me at my ease really well, so I was able to be reasonably coherent.

    Listening to it was very odd. I really don't like the sound of my own voice - it's nothing like the voice I hear in my head when I speak. Once I'd got over that hurdle, I was actually OK listening to it.

    Thank you @Gary Burgess for making it as painless as it could be - and for being a lovely guy!
     
    Atle, Daisybell, TakMak and 26 others like this.
  15. Gary Burgess

    Gary Burgess Established Member (Voting Rights)

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    The best feedback. You've made my day, @Trish!!!
     
    Atle, TakMak, Marit @memhj and 18 others like this.
  16. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

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    Another good podcast . Nice to hear your voice @Trish (similar to what I had in my mind weirdly). Thank you for sharing your story. I knew some of it already but it makes a real difference hearing you talk.:hug:
     
  17. Joh

    Joh Senior Member (Voting Rights)

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    Great episode! Thank you to @Gary Burgess and special thanks to @Trish for sharing your story. You have a very pleasant way of talking Trish (Gary too :)) and I could have listened much longer. Perfect description of living with ME, could relate to so many things. :hug:
     
  18. Louie41

    Louie41 Senior Member (Voting Rights)

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    @Trish :hug::hug::hug: Hearing your voice brought me immediately to tears. Our time ill and course of illness are almost identical, although I became ill a little later in life. It's affirming to see one's experience shared by another respected S4ME member. Thank you for doing the podcast, and I hope it won't be your last.

    Our voices are so important! We are silenced by ME. And thank you, @Gary Burgess, for bringing your voice and the voices of fellow PwME into the public sphere in such a generous and nurturing way. I'm going to be suggesting your podcasts to friends and supporters; it's best to hear it straight from the horse's mouth.
     
  19. Amw66

    Amw66 Senior Member (Voting Rights)

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    Another great podcast @Gary Burgess . It was lovely to hear your voice @Trish, and to have those nuggets of experience. These are worth their weight in gold.

    Like you i hope biomedical research can make significant inroads for my daughter too.
     
  20. Peter

    Peter Senior Member (Voting Rights)

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    Well done to another great podcast, Gary. I like the approx 30 minute format.

    And a big thanks to Trish. Great listening to your powerful story told with such grace. Thought it was an excellent example of immense strength. ME-patients truly have a remarkable ability to endure and stay mentally strong and sane facing the ultimate challenge.
     

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