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20-signatory letter in Daily Telegraph today calling for biomedical research into ME

Discussion in 'Action Alerts and Advocacy' started by Sasha, Feb 6, 2010.

  1. Sasha

    Sasha Fine, thank you

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    On the MEA website today:

    Saturday, 06 February 2010 07:54
    A joint letter appealing for the nation to start taking ME seriously appears in The Daily Telegraph today. It is signed by 20 leading figures in the ME debate including parliamentarians, clinicians, researchers and figures from the ME national organisations and patient support groups.

    Breaking the ME enigma

    SIR The death of Lynn Gilderdale and the humane verdict in the trial of her mother brought home to many people for the first time what a devastating illness myalgic encephalomyelitis (ME) can be.

    Many of the estimated quarter of a million people with ME in Britain experience not only extreme pain and disability, but also incomprehension, ignorance, lack of sympathy and at times outright hostility, not only from the public but also from professionals responsible for their care.

    Such lack of understanding even extends to blaming parents for the severity of their childs illness.

    It is time the nation began to take ME seriously. Provision of adequate clinical and other services by properly informed and sympathetic professionals is currently subject to a postcode lottery. Such provision should avoid inappropriate treatments, and range from support for home tuition for school-age children to respite care for the severely affected.

    Above all, we should fund biomedical research to resolve the enigma of the underlying pathology of this illness. We should build on recent scientific advances to develop effective treatments, so that no one in future need experience the pain, isolation and despair that were Lynn Gilderdales fate.

    Countess of Mar
    Secretary, All Party Parliamentary Group on ME
    Dr Neil Abbot
    Operations Director, ME Research UK
    Jane Colby
    Executive Director, The Young ME Sufferers Trust
    Anne Faulkner
    Hon Director, CFS Research Foundation
    Tanya Harrison
    Chairman, BRAME
    Malcolm Hooper
    Emeritus Professor of Medicinal Chemistry, University of Sunderland
    Andy Kerr MSP
    Dr Jonathan Kerr
    Consultant Senior Lecturer, St Georges, University of London
    Simon Lawrence
    Chairman, 25 per cent ME Group
    Kathleen McCall
    Chairman, Invest in ME
    Dr Luis Nacul
    Consultant in Public Health, London School of Hygiene and Tropical Medicine
    Professor Derek Pheby
    National ME/CFS Observatory
    Neil Riley
    Chairman, ME Association
    Dr Charles Shepherd
    Dr Nigel Speight
    Sir Peter Spencer
    Chief Executive Officer, Action for ME
    Des Turner MP
    Chairman, All Party Parliamentary Group on ME
    Dr William Weir
    Mary-Jane Willows
    Chief Executive Officer, Association of Young People with ME
    Andrew Stunell MP
    Vice Chairman, All Party Parliamentary Group for ME/CFS
     
  2. sproggle

    sproggle Jan

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    Thanks Sasha!

    :Retro smile: Thanks so much for this link it's really brightened my morning :Retro smile:
    Great letter from ME advocates in the UK and in a national news paper too! :thumbsup:

    :thumbsup: Jan xx
     
  3. Min

    Min Senior Member

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    Oh that's brilliant, I shall email the Countess to thank her - she takes far to much stick .
     
  4. Nina

    Nina Senior Member

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    This seems to be Lynn's legacy to us. I only wish she would have lived to see this, and much more to see people act on it.
     
  5. V99

    V99 *****

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  6. Adam

    Adam *****

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    Lynn's legacy is incredibly evocative. Hopefully one day someone will write, sing, produce a work of art and dedicate it to her and call it simply Lynn's Legacy.
     
  7. [WILD CHEERING]

    Woop!!! This is great news!

    Rachel xx
     
  8. Dolphin

    Dolphin Senior Member

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    It's a great letter.

    But, to nit-pick, I don't think ME is a great example of a condition with a post-code lottery. Where are the good centres? Some places don't have CBT/GET services but some might consider that a blessing (harder for the DWP etc to force you to have to do a course, etc).
     
  9. Actually, there are some GPs in the UK willing to experiment and not necessarily toe the line re CBT/GET. A friend of mine recommended one to me, and I know Adam here has had good fortune. Will try to get an appointment and report back...

    Rachel xx
     
  10. Sing

    Sing Senior Member

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    Yes! This is great-- My only addition is that, if I remember correctly, The Daily Telegraph is the paper in Britain that the ruling class reads. If so, this is even better!

    Sing
     
  11. I dunno - it's the paper in Britain that the extreme right-wing read, and the fox-hunting toffs, that's for sure.

    Unfortunately most of the ruling class (bankers and such) read the Financial Times, as far as I can tell. Most people who work in the media read the Guardian (graaaghhhhh, I really respected them until I got ME).

    I think the story could be put across in terms of a financial angle (ME sufferers, WPI + Big Pharma vs the Insurance industry and the UK Govt) that the FT would be very interested in.

    I so wish we had some PR people around this forum...

    Rachel xx
     
  12. Sing

    Sing Senior Member

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    Thanks Rachel, for your explanation about the British newspapers, the English ones anyway. (What does "toffs" mean? I have always wanted to know. I understand the reference but not the word.)

    You are right, that the more we can focus stories, petitions, letters, articles or whatever, FOR the correct media outlet, the better off we will be in terms of a campaign.

    Sing
     
  13. I looked it up:
    Wikipedia entry for Toff

    and now feel a bit embarrassed about using it... but there you go, Wikipedia provides a really good explanation -- better than I could do.

    Rachel xx
     
  14. V99

    V99 *****

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    As in toft of toft hall.
     
  15. Sing

    Sing Senior Member

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    Thanks, Rachel, and also V99 for your humor! I think both the British and Canadians excel in humor. What a gift!

    Wishing my brain were a little more agile so I could add some humor too, but all I can do is to enjoy that of others.

    Sing
     
  16. Abraxas

    Abraxas Senior Member

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    Toff is short for toffee nosed :D - see below for some suggestions as to the origin:
    http://www.smh.com.au/news/big-ques...-as-toffeenosed/2006/08/17/1155407946146.html

    Sorry - getting off topic :worried: :D
     
  17. Sing

    Sing Senior Member

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    Toff

    Hey, I found what could be the origin of toff--It is etoffe, the French word for "quality", also worth, stuff, fabric or material.
    I've been noticing lately how a number of words in English which I never knew the basis for turn out to be French words. I never think of the French as having "been there first", being Anglophile by heritage, but sometimes they have.

    Also remember reading in the English mystery writer, Margary Allingham, her Cockney assistant character, Lugg, to the noble sleuth, Albert, call the upper class, "the quality". So that fits with etoffe too.

    Better late than never.

    Sing
     

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