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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"Perceptions of Myalgic Encephalomyelitis" by Robert McMullen

Discussion in 'General ME/CFS Discussion' started by Tom Kindlon, Oct 21, 2016.

  1. Tom Kindlon

    Tom Kindlon Senior Member

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    http://strangerandstranger.net/miscellanea.htm#perceptions




     
    Last edited: Oct 21, 2016
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  2. worldbackwards

    worldbackwards A unique snowflake

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  3. Mark

    Mark Former CEO

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    This is brilliant writing. Apart from the main article, further on is the best poetry I've ever seen about ME. Thanks Tom, and thanks to Robert too.
     
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  4. Barry53

    Barry53 Senior Member

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    It is like a perverse sitcom. Bigoted sincerity at the heart of the health system.
     
    Last edited: Oct 23, 2016
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  5. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    Hmmm, yeah, as if.
     
  6. Sing

    Sing Senior Member

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    That could be a play. Seemingly ordinary on the surface, but deeply sad.
     
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  7. daisybell

    daisybell Senior Member

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    I've just bought his book on amazon. Enjoying it!
     
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  8. Tom Kindlon

    Tom Kindlon Senior Member

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  9. Hutan

    Hutan Kina solidarity

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    I bought it too, and have finished it. Very affecting. *tears*

    I hope Robert keeps writing.
     
    Last edited: Oct 23, 2016
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  10. Robert 1973

    Robert 1973

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  11. Robert 1973

    Robert 1973

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    Thanks, Mark. It's great to get positive feedback, I'm hoping to add another poem soon. I hope you will read the book. All royalties are donated to charities funding biomedical ME research.
     
    Last edited: Dec 3, 2016
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  12. Robert 1973

    Robert 1973

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    Thank you. Please leave a review on Amazon!
     
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  13. Robert 1973

    Robert 1973

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    Thank you, Hutan. Please recommend it – especially to healthy people.

    I have another poem and essay in the pipeline. Also many ideas for another book but I'm not well enough to start on that yet.
     
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  14. alex3619

    alex3619 Senior Member

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    I think many of us see this kind of thing in our own lives, and that of other patients. It strikes a chord because at its heart its the experience of many. In the last few years it has been suggested by doctors that I be put down (jokingly, but I was not impressed), that I should see other doctors, or that I should do exactly what they want even if its physically impossible. A few years back a nurse kept throwing her positive thinking psychology at me, and as I left the hospital in a walker she said "See, there is nothing wrong with you now.".

    Ignorance and prejudice abound. Sadly it is not alone in ME. It happened in Multiple Sclerosis. Going further back it happened with diabetics. The history is there, but the medical systems that support doctors do nothing to rectify the situation. Long after they finally bother to read the answers in the scientific literature there will be many doctors doing the same things to other patients with other diagnoses. Its a legacy of medical failure all around.
     
    Last edited: Dec 4, 2016
  15. daisybell

    daisybell Senior Member

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  16. Barry53

    Barry53 Senior Member

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    I think there is a fundamental arrogance in human nature, that some people who know and understand a lot, assume they therefore know everything. Whereas there are others who also know and understand a lot, but have the humility to realise there is much more they do not know or understand, and how dangerous and crass it is to assume otherwise.

    (In case it is not clear, I am referring to the BPS brigade here).
     
  17. SuzieSam

    SuzieSam Constant companion

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    You are a brilliant writer, @Robert 1973. I loved everything I read on your web page. You express yourself so elegantly. It's amazing how you manage to cogently express the emotions of suffering without mawkish self pity. (Basically the total opposite to anything I can imagine writing).

    I'm off to buy your book. :heart:
     
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  18. alex3619

    alex3619 Senior Member

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    ... and passive acknowledgement that there is a problem elsewhere, from within the medical system?
     
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  19. Robert 1973

    Robert 1973

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    Thank you, Suzie. Very kind. It takes me a long time – and I do a lot of editing. I hope you enjoy the book.
     

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