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Mirror: Woman, 28, goes from keen runner to year in dark room because of severe disorder

Discussion in 'General ME/CFS News' started by Kalliope, May 1, 2019.

  1. TiredSam

    TiredSam Moderator Staff Member

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    I thought this was a good article up to:

    I wish that had been the last sentence. But then woo and fundraising, as ever.
     
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  2. Little Bluestem

    Little Bluestem Senior Member (Voting Rights)

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    @Graham will want to know about this! ;)

    Isn't this the same hospital that imprisoned that poor girl a few years ago.
     
    ladycatlover likes this.
  3. Graham

    Graham Senior Member (Voting Rights)

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    Thanks Bluestem! My cranial desert probably does lack stimulation.

    Discussing light in general, I'm an owl and always have been. I go to bed late and prefer to get up late. You can bomb me with blue light in the mornings and I'll still prefer to sleep. I'm also a keen gardener, and like to be outside more or less regardless of the weather. So much for light promoting hair growth.

    I know there's a lot of theory about blue light and sleep cycles, but I can't say it seems to have much effect on me, but then, I never was a light sleeper.

    This all reminds me of the craze in Victorian days, when electricity came to the fore, of applying electric currents to various parts of the body to heal almost anything, or even bringing the dead back to life (Frankenstein).
     
  4. DigitalDrifter

    DigitalDrifter Senior Member (Voting Rights)

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    I wonder if that's a genuinely mislead user or a Lightning Process shill.
     
  5. ladycatlover

    ladycatlover Moderator Staff Member

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    Merged thread
    For the past year, 28-year-old Natalie Price has been living in darkness and silence.

    In 2014, she was diagnosed with myalgic encephalomyelitis, commonly known as ME or chronic fatigue syndrome. Sufferers complain of symptoms including extreme tiredness and fatigue, constant pain, extreme headaches and sensitivity to light and sounds.

    Since being diagnosed, Natalie’s condition has deteriorated. She is now confined to her bedroom and is almost totally reliant on her fiancé, Jonathan Vaughan, to care for her. Over the past month, he has kept a video diary on his phone for our current affairs programme ‘Y Byd ar Bedwar’.

    https://www.itv.com/news/wales/2019...diff-woman-left-bedbound-after-developing-me/
     
    Last edited by a moderator: Jun 6, 2019
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  6. Perrier

    Perrier Senior Member (Voting Rights)

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    And how can this portrait not engender urgency!
     
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  7. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    Just watched it. Natural human response to incapacitated young person surely would be to greatly step up.. urgent plans to produce change both in services provisions and medical research, governments and medical response has been to do little and argue about exercise as treatment. Nathalie isn’t the first person to highlight how severe ME is life blighting... the late Lynn gilderdale did this, now on YouTube, documentary in 1992?

    That GET is a hurdle that has to be dismantled FIRST before we can get it justified that money has to go in urgently for research - some of us have been bedridden years - is beyond frustrating.

    I applaud the couple for exposing their lives and if it was them that got tv to cover the story. ##MM was validating that the patient population generally is disgruntled
     
    Last edited: Jun 6, 2019
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  8. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    S4C Documentary: Are ME patients being wronged by the government and NHS in Wales? | 14 June 2019

    youtube link to full documentary and article of highlights at MEA website:
    https://www.meassociation.org.uk/20...the-government-and-nhs-in-wales-14-june-2019/
     
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  9. inox

    inox Senior Member (Voting Rights)

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    Hope - for the reader - and the feeling "we can do something to help this person". It's a better story.

    Illness stories with the person just continuing to be very ill, and no hope of treatment, isn't something most people like to read.

    Hence we've got tons of LP-stories here, and it's very hard to get othe patient stories out. It seemes to help if it can be linked to new. promising research.
     
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