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A Life Hidden - Blog posts by Naomi Whittingham

Discussion in 'General ME/CFS News' started by Andy, Nov 22, 2017.

  1. Andy

    Andy Committee Member & Outreach

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    Moderator note:
    We've merged a number of threads to collect Naomi's blog posts into one thread.


    An article originally printed December 2016 but now updated with an audio version as well.
    https://www.opendemocracy.net/naomi...26-years-on-why-is-it-still-poorly-understood
     
    Last edited by a moderator: Jan 7, 2021
  2. Eagles

    Eagles Senior Member (Voting Rights)

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    Andrea, rachel76, MEMarge and 18 others like this.
  3. Barry

    Barry Senior Member (Voting Rights)

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    I'm afraid I've already gone past that in hexadecimal ... heading towards 41 now :rolleyes:.
     
  4. TiredSam

    TiredSam Moderator Staff Member

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    Brilliant writing.
     
    Missense, Hutan, Joh and 9 others like this.
  5. Graham

    Graham Senior Member (Voting Rights)

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    When I look at my own son, or when I read accounts like this, I always realize how lucky I was to have been healthy up to the age of 49. There's a deep, burning anger about their neglect that drives me on: I could accept it more if society had done its best for them, but it just ignores their situation.
     
    Andrea, Missense, Hutan and 16 others like this.
  6. Amw66

    Amw66 Senior Member (Voting Rights)

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    Surely you forget St Esther? All that dedication and money and no clearer as to how to diagnose ME
     
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  7. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Very relatable and good to read such wise reflections, and someone putting words to these thoughts and feelings. Am deeply impressed over Naomi.
     
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  8. Diwi9

    Diwi9 Senior Member (Voting Rights)

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    Whoa...Naomi...powerful stuff.
     
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  9. Indigophoton

    Indigophoton Senior Member (Voting Rights)

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    Good of Naomi to make this point. It's often overlooked, since media articles and films etc are, almost by definition, usually written by or about those a little less severe, or about the very severe who have supportive family.
     
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  10. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Agree! It also turns my stomach each time I see the oh-so-old-angle; patient came down with whatever, simply wouldn't accept it and is now doing much better. Bah!
     
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  11. Daisymay

    Daisymay Senior Member (Voting Rights)

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    I agree Graham. My husband and I were 28 when we were first ill, but we had been able to go to uni, travel, work, get married so luckier than so many.

    I'm really sorry Eagle and others who have missed out on so much of life x
     
    Missense, Hutan, Graham and 8 others like this.
  12. Trish

    Trish Moderator Staff Member

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    Strong fellow feeling here, @Graham. I was lucky to be healthy to age 40, my daughter got ME aged 16, though it had probably started sooner, as she had a gradual onset. Now 37 she has had no life apart from living at home with me. I am humbled by how stoically and without self pity she copes and makes the best of the little she can do.

    Naomi's article is beautifully written and so so sad but uplifting at the same time.
     
    Andrea, Missense, Hutan and 11 others like this.
  13. Grigor

    Grigor Senior Member (Voting Rights)

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    I'm happy her blog is well received. I felt it was important to share her thoughts and wisdom with everyone but I can't help but feeling angry about the situation with ME as well...

    Thank you for sharing it!!
     
  14. Barry

    Barry Senior Member (Voting Rights)

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    Beautifully written indeed.
     
  15. Amw66

    Amw66 Senior Member (Voting Rights)

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    A very eloquent and touching piece. I hope that it gets the wider coverage it deserves.
     
  16. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    From FB:

    Voices from the Shadows
    A moving, informative and beautifully presented new website by advocate Naomi Whittingham, with her collected writings and much else...

    Words from a Hidden World

    [​IMG]
    Alive but barely living: the severity of ME is rarely acknowledged in the mainstream media


    https://alifehidden.com/2018/11/25/words-from-a-hidden-world/

    eta: there is a lot on this site well worth sharing.

    eta2:
    "So today I take this new direction with my writing and add my voice to all those speaking out online.

    I hope that many will relate to what I have to say, particularly now that I can express myself with greater freedom than previously.

    I also hope that my words will reach beyond ME circles and into the wider world.

    Our lives have been hidden for too long."
     
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  17. Andy

    Andy Committee Member & Outreach

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    https://alifehidden.com/junior-doctor-training/

     
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  18. NelliePledge

    NelliePledge Moderator Staff Member

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    Wow that is powerful.
     
  19. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    "Remember that history does not always look kindly on beliefs that were once firmly held by the medical establishment. In relatively recent times, for instance, homosexuality was held to be a mental illness warranting the most barbaric treatment. Before challenging a patient, a wise doctor might first question the accepted orthodoxy of the day."
     
  20. NelliePledge

    NelliePledge Moderator Staff Member

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    Dr Paul Williams MP is a GP and member of the Health and Social Care Select Committee

    ETA I hope he gets the committee especially Chair Dr Sarah Wollaston to read this she needs good information to balance out what she gets from Wesselyites.
     
    Last edited: Dec 11, 2018

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