The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
Discuss the article on the Forums.

Bristol Post article: "It's a living death when the symptoms are very severe"

Discussion in 'General ME/CFS News' started by Aurator, Aug 15, 2015.

  1. Aurator

    Aurator Senior Member

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    This seems a reasonably balanced article. They invite comments.

    'Sarah-Jayne Lewis...spoke to Tom Morris about how the often misunderstood condition has affected her life.'

    '"I went to the doctor but ME was dismissed and I was told I probably had depression again," she said.'


    '"It's fair to say I live much of my life through social media.'"

    'Understandably, on occasions, she has been in a dark place and wondered if there is any point going on...'




     
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  2. taniaaust1

    taniaaust1

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    wow what a great article. Im so surprised this came out of the UK.
     
  3. minkeygirl

    minkeygirl But I Look So Good.

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    What I like is they talk about the little things. Talking on the phone. Glare from TV, fluctuating symptoms hourly.

    I still think its hard for anyone who doesn't have this to understand just how bad it is.

    You can think you get it, but no one can except another PWME "gets it".
     
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  4. TiredSam

    TiredSam The wise nematode hibernates

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    Excellent article. The journalist obviously gets it, and wants reader to as well. He deals with the psychosocial view by simply not mentioning it, which is fine, let them blow their own trumpet. I've stopped saying "some people think it's psychosomatic but ..." as well.
     
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  5. sarah darwins

    sarah darwins I told you I was ill

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    Bob, Simon and Sasha like this.
  6. Snowdrop

    Snowdrop Rebel without a biscuit

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    And when this article hit the press the BPS group started flapping and clucking and immediately started looking for a media outlet that would bring their view back to centre stage. I'm sure we'll be seeing the fruits of that hysterical need to have their phantasmagoric interpretation of this illness along with their 'platinum treatment' protocol in a paper coming to us soon.

    After all, never ever trust a patient. We haven't a clue as to how to understand what we are experiencing. Thankfully (not) the experts can rescue us and tell us all about it. :rolleyes:

    I do confess to one stupidity on my part. I'm still trying to wrap my head around how -- how in the name of sanity do this group continue to not understand the harm caused to patients because of their views. :bang-head:

    Although, on a more upbeat note, it's been mentioned in other threads that the views expressed more recently seem more muted, cautious, and carefully ambiguous.
     
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  7. Bob

    Bob

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    I have an answer in the form of a multiple choice question: a) Because they don't want to understand? or b) They do understand but they don't care? or c) They don't have the capacity for empathy?
     
    Last edited: Aug 16, 2015
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  8. Bob

    Bob

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    Great article. I think it might have come off the back of the radio show, as @sarah darwins suggests. The radio presenter was really moved by the experience of meeting patients and promised to carry on doing his bit to support the community. He even took the chilli challenge. And he has journalist contacts.
     
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  9. Snowdrop

    Snowdrop Rebel without a biscuit

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    Yes, I suppose so.
    To me the motivation to understand things as they are is so strong it's still difficult to comprehend deliberate and willful obtuseness.
    I suppose their POV is sufficiently rewarded that it makes it easier.
    It must take a great deal of energy to keep reality at bay.
     
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  10. Bob

    Bob

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  11. Effi

    Effi Senior Member

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    Because their belief in their own theory is so firm that they are willing to do anything to keep it alive. Including blatantly ignoring reality.
     
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  12. Snowdrop

    Snowdrop Rebel without a biscuit

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    Yeah, hard to be empathetic when your first impulse is sadism.
     
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  13. jimells

    jimells Senior Member

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    d) They are paid to not understand

     
  14. snowathlete

    snowathlete

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    Really good. Worth sharing on social media!
     
    Bob likes this.
  15. Bob

    Bob

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  16. geraldt52

    geraldt52 Senior Member

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    "It is difficult to get a man to understand something, when his salary depends upon his not understanding it!"
    Upton Sinclair
     

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