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UK XMRV demo 1st November

Discussion in 'Action Alerts and Advocacy' started by Kate_UK, Oct 20, 2010.

  1. Countrygirl

    Countrygirl Senior Member

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    One of us on xmrvweb.me.uk contacted the BBC, but they said they will not cover the demo. :Retro mad: Instead, we have been treated to Esther Rantzen broadcasting the wonders of LP and recommending we try this 'instant' cure, which is, she said, now available on the NHS. :( She also informed the British public that 60% of people with ME recover anyway, even without the wonderous benefits of LP. Someone tried to introduce the subject of the demo and XMRV, but Esther quickly silenced them. The BBC are not playing nicely at the moment. :Retro mad:
     
  2. Sasha

    Sasha Fine, thank you

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    Oh :Retro mad::(:Retro mad::(:Retro mad:...
     
  3. paddygirl

    paddygirl Senior Member

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    I've REALLLY gone off Esther Rantzen

    I just had a listen on the BBC program with Dr Shepherd. I didn't find Dr Shepherd but heard a lady called, I think Vikki

    I wanted to scream when Esther condescended so horribly to the lovely Scottish lady "oh dear, you do sound poorly" but then I laughed out loud when Vikki (with ME) turned the tables rather neatly and got in a few digs, good girl. :D Vikki had done her homework, not so Esther.

    I think Esther must be in major denial, reading through the lines, I think it quite possible her daughter is one of the many improved, but not one of the well. Dr Bell describes this very succinctly.

    Yes the BBC are still manning the ramparts.

    Paddy x
     
  4. paddygirl

    paddygirl Senior Member

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    Ps glad i didn't hear the LP bit, my slight nausea would have turned to outright heaving!
     
  5. Sasha

    Sasha Fine, thank you

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    Glad I missed Esther!

    Has anyone heard how things went at the demo?
     
  6. luz_de_sol

    luz_de_sol

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    I can't believe the media blackout....lets hope there is something tomorrow?

    Sasha...pics of the demo are online... see http://standup2me.blogspot.com/
     
  7. Sasha

    Sasha Fine, thank you

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    Thanks, luz - that guy certainly looks scarey in his biohazard suit! Looks like very small numbers, though - understandable given the state we're in of course but it takes a big demo to get media coverage.
     
  8. luz_de_sol

    luz_de_sol

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  9. luz_de_sol

    luz_de_sol

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    ah ha!! stage a sit in!!
     
  10. Sasha

    Sasha Fine, thank you

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  11. RivkaRivka

    RivkaRivka Senior Member

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    this is amazing and inspiring! we need to see this as a model for what we can do in the US now. thank you, UK ME/CFS folks, for showing us how it is done!

    rivka
     
  12. Jenny

    Jenny Senior Member

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  13. Sasha

    Sasha Fine, thank you

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    Thanks, Jenny - that's a great photomontage. People had some good placards!

    Here's a clip of the demo on YouTube.
     
  14. Enid

    Enid Senior Member

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    Esther Rantzen and whoever organised this interview have done the ME community here no favours. "Cured" but TWICE ? Nonesense. Has she a head in the sand unable to see the global extent and research findings. Come on Esther go to the real people who know here - try to recognise things as they really are and support those in the know and thousands suffering. We are on the way (thanks to US research) and can do without such ignorant assurances. You bring ridicule on us to the whole wide world.
     
  15. shannah

    shannah Senior Member

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    Love how creative you all got. Great pics and utubes.

    Mickey mouse ears - how appropriate!
     
  16. Min

    Min Senior Member

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    it's made it to the regional ITV nres:


    "Blood donation ban Wed Nov 3 2010 ME...sufferers will be banned from donating blood under new guidelines.Officially the ban is to protect the health of those with the condition, also known as Chronic Fatigue Syndrome.But a 35 year old ME sufferer from Cheltenham believes there's more to the ban than the Government is letting on."

    http://www.itv.com/westcountry-east/blood-donation-ban10683/

    They talk about a virus, not a retrovirus.

    Sir Peter Spencer, CEO of Action for ME grabs this amazing opportunity in order to to say nothing in particular (we can't upset the weasels, can we now?). Shame they didn't interview Dr Charles Shepherd.
     
  17. Sasha

    Sasha Fine, thank you

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    Very interesting, Min - odd that they didn't mention the words "XMRV" or "retrovirus" even though the interviewee was wearing a small badge that read "XMRV positive" (but you had to look hard to see it and if you didn't know what XMRV was, it wouldn't mean anything).

    I was amazed by the NHS Blood & Transplant service's statement that "There is no evidence that a donation from a donor with this condition could in any way harm a patient." The evidence certainly isn't definitive yet for XMRV but it's there; and to say otherwise is flat-out wrong.

    I find it odd that they'd do a news report on this and yet miss the main news - that a retrovirus may cause ME and it may be in the blood supply. Why do it at all if they're going to dodge the issue?
     
  18. Fibrobabes

    Fibrobabes

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    Hi Sasha
    They would only let me use virus as they said viewers would not understand retro so on. The world of editing. There might be an article in my local paper tmw
     
  19. Sasha

    Sasha Fine, thank you

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    Hi Fibrobabes - that was you in the interview? Thanks for being so brave as to go on the telly with this! It's no fun to talk about. You came across really well.

    I'm amazed they thought people wouldn't know what a retrovirus is! I suppose a lot might not know specifically what it is but they would at least know it was some kind of virus, which is what you ended up saying anyway.

    I hope you get into the paper!

    Welcome to the forums, by the way, I see this is your first post!
     
  20. Fibrobabes

    Fibrobabes

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    Hi Sasha
    Thanks for your message. The problem with the media they tell you to keep simple. I did use retro but they said it was too complex. ITV were very nice though. Ended up with a terrible migraine. I am fed up with the whole system and how we are treated. I was in a battle with my PCT for nearly two years. They won't fund treatment. We just seem to fight all the time! I will keep you posted!
     

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