Phoenix Rising supports the Millions Missing global day of protest
Phoenix Rising is delighted to support the demands being made in the ME/CFS community’s first-ever global day of protest …
Discuss the article on the Forums.

"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

    Messages:
    1,387
    Likes:
    8,271
    http://strangerandstranger.net/miscellanea.htm#perceptions




     
    Last edited: Oct 21, 2016
    erin, Effi, Snow Leopard and 17 others like this.
  2. worldbackwards

    worldbackwards A unique snowflake

    Messages:
    2,091
    Likes:
    10,358
    Earth
  3. Mark

    Mark Former CEO

    Messages:
    5,224
    Likes:
    6,197
    Sofa, UK
    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.
     
    erin, Mel9, actup and 5 others like this.
  4. Barry53

    Barry53 Senior Member

    Messages:
    2,277
    Likes:
    13,705
    UK
    It is like a perverse sitcom. Bigoted sincerity at the heart of the health system.
     
    Last edited: Oct 23, 2016
    Mel9, Robert 1973, Woolie and 12 others like this.
  5. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

    Messages:
    2,016
    Likes:
    5,110
    USA
    Hmmm, yeah, as if.
     
  6. Sing

    Sing Senior Member

    Messages:
    1,632
    Likes:
    1,337
    New England
    That could be a play. Seemingly ordinary on the surface, but deeply sad.
     
    Mel9, Robert 1973, Woolie and 3 others like this.
  7. daisybell

    daisybell Senior Member

    Messages:
    1,601
    Likes:
    7,362
    New Zealand
    I've just bought his book on amazon. Enjoying it!
     
    Mel9, Robert 1973, AndyPR and 2 others like this.
  8. Tom Kindlon

    Tom Kindlon Senior Member

    Messages:
    1,387
    Likes:
    8,271
  9. Hutan

    Hutan Senior Member

    Messages:
    1,069
    Likes:
    6,431
    New Zealand
    I bought it too, and have finished it. Very affecting. *tears*

    I hope Robert keeps writing.
     
    Last edited: Oct 23, 2016
    Mel9 and AndyPR like this.
  10. Robert 1973

    Robert 1973

    Messages:
    57
    Likes:
    645
    slysaint, Effi, Mel9 and 1 other person like this.
  11. Robert 1973

    Robert 1973

    Messages:
    57
    Likes:
    645
    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
    Mark, Izola, Mel9 and 2 others like this.
  12. Robert 1973

    Robert 1973

    Messages:
    57
    Likes:
    645
    Thank you. Please leave a review on Amazon!
     
    Mel9 likes this.
  13. Robert 1973

    Robert 1973

    Messages:
    57
    Likes:
    645
    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.
     
    Hutan, Mel9 and Comet like this.
  14. alex3619

    alex3619 Senior Member

    Messages:
    12,523
    Likes:
    35,227
    Logan, Queensland, Australia
    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

    Messages:
    1,601
    Likes:
    7,362
    New Zealand
    Effi, Robert 1973, Hutan and 2 others like this.
  16. Barry53

    Barry53 Senior Member

    Messages:
    2,277
    Likes:
    13,705
    UK
    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 Senior Member

    Messages:
    201
    Likes:
    512
    Israel
    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:
     
    Comet, Mel9 and alex3619 like this.
  18. alex3619

    alex3619 Senior Member

    Messages:
    12,523
    Likes:
    35,227
    Logan, Queensland, Australia
    ... and passive acknowledgement that there is a problem elsewhere, from within the medical system?
     
    Barry53 and Mel9 like this.
  19. Robert 1973

    Robert 1973

    Messages:
    57
    Likes:
    645
    Thank you, Suzie. Very kind. It takes me a long time – and I do a lot of editing. I hope you enjoy the book.
     

See more popular forum discussions.

Share This Page