"Perceptions of Myalgic Encephalomyelitis" by Robert McMullen

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Robert 1973

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60
Mark said:
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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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.
 
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alex3619

alex3619

Senior Member
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13,810
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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.
 
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Barry53

Senior Member
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2,391
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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).
 
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Robert 1973

Messages
60
SuzieSam said:
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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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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