The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
Simon McGrath concludes his blog about the remarkable Prof George Davey Smith's smart ideas for understanding diseases, which may soon be applied to ME/CFS.
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Guardian article

Discussion in 'General ME/CFS News' started by Jenny, Mar 12, 2011.

  1. Jenny

    Jenny Senior Member

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    This is also in today's Weekend colour supplement.

    http://www.guardian.co.uk/lifeandstyle/2011/mar/12/what-really-thinking-woman-with-me

    What I'm really thinking: The woman with ME'Yes, it's scary to think you could wake up with a cold one day and never be well again'


    The Guardian, Saturday 12 March 2011 Article history Illustration: Lo Cole Twenty years coping with the symptoms of ME is bad enough, but 20 years of coping with people's reactions to it adds insult to injury in the most literal sense.

    First was the era of "yuppie flu", when people you'd never met before felt entitled to interrogate you as to the validity of your illness and your presumed psychological deficiencies. Nowadays I get either the "you need to pull yourself together" brigade, or the alternative types who ask what my illness means, and are sure I could be well if only I understood what it was trying to tell me. Well, if I haven't figured that out in 20 years, that must mean they think I'm pretty thick. Then there are the ones who say, "But you always look so well." Of course I look well when I'm out and about; it's because that's a day when I'm well enough to drive. They should see me on the other days.

    Of course, this is largely about the rudely healthy being in denial of the reality of illness. Yes, it's scary to think you could wake up with a cold one day and never be well again, and there's little you can do about it. But don't try to force me to collude with you in trying to deny that it happens.

    What I mind most, though, are the people who listen to my story with such sympathy, but then take equal time to describe the horrors of their current cold/flu/chilblains. My usual response? "Don't worry too much about feeling ill, it gets easier after the first couple of years." That shuts them up.

    Tell us what you're really thinking at mind@guardian.co.uk
     
  2. Esther12

    Esther12 Senior Member

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    Got to admit - I was expecting something shit from the Guardian. Fine little story imo. Thanks for the link.
     
  3. Min

    Min Guest

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    me too, thank you
     
  4. Enid

    Enid Senior Member

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    Thanks Jenny for posting - the Media listening too - Wow.
     
  5. Boule de feu

    Boule de feu Senior Member

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    A wonderful little piece!

    Clever!
    I like the end a lot.
    I will start using it.
     
  6. Recovery Soon

    Recovery Soon Senior Member

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    "What I mind most, though, are the people who listen to my story with such sympathy, but then take equal time to describe the horrors of their current cold/flu/chilblains. My usual response? "Don't worry too much about feeling ill, it gets easier after the first couple of years." That shuts them up."

    Love it- Gonna steal that one. I hate when people pull that shit.
     
  7. shannah

    shannah Senior Member

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    Loved this bite-size article. Short & Sweet!

    "What I mind most, though, are the people who listen to my story with such sympathy, but then take equal time to describe the horrors of their current cold/flu/chilblains."

    Ain't that the truth! I've always referred to this response from others as "The Broken Fingernail Syndrome."
     
  8. Esther12

    Esther12 Senior Member

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    Still though... having the flu for a week is rubbish. If you want to maintain relationships with healthy people, you need to accept that they will be genuinely upset about circumstances still preferable to your own. Some people can do it in a dicky way, and it's fine to be off with them... but we need to take care not to slip into getting so absorbed in our own harships that we become indifferent to those of others.

    (I know that no-one was doing that here... but I still wanted to add it).
     
  9. anne_likes_red

    anne_likes_red Senior Member

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    That's great!
    Thanks for posting it Jenny.
     
  10. Sasha

    Sasha Fine, thank you

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    Good to see this bit particularly, I think. A lot of the denial we face about our illness is to do with people's fear that it is possible to become ill in the way that we have. If someone reads that and gets some a bit more self-awareness, great.
     
  11. Jenny

    Jenny Senior Member

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    Response

    I've sent this response to the Guardian article. (They publish short responses in the Weekend colour supplement.)

    Doubt it will get published though, knowing their record!

    Jenny
    ................................................................................................



    For me, disbelief in ME (What I'm really thinking, 12 March) led to the breakup of my marriage and the struggle to bring up two children alone while severely ill. The reason why people don't take the symptoms seriously is that much of the medical establishment and the media have ignored the reality of
    this devastating neurological disease. Sufferers are portrayed as simply being tired, but in fact many are housebound or bedridden for years or decades with severe pain and never-ending flu-like symptoms. We desperately need proper investment in research to understand and treat this illness.

    Dr Jennifer Kidd
     
  12. justy

    justy Donate Advocate Demonstrate

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    Thank you Jenny for writing this response, i hope they do publish it and will look out next week - although not holding my breath!
     

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