The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
Discuss the article on the Forums.

Farewell – A Last Post from Anne Örtegren who has just lost her struggle with ME

Discussion in 'General ME/CFS News' started by Countrygirl, Jan 7, 2018.

  1. Kenshin

    Kenshin Senior Member

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    I think this is one of the most important pieces of writing about M.E.
    Very moving and highlights severe M.E.
    I feel both sad and angry reading it and I'm not usually emotional.

    I wonder if these doctors try patients on strong opiates before going along with the assisted suicide?
    It seems common sense to me that if someone is ill to the point of wanting to die they should receive the
    best palliative medicine available to see if it helps them at least enough to not want to die.
     
  2. Each Day

    Each Day

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    Very sad, rest in peace.
     
    Mel9 likes this.
  3. Gingergrrl

    Gingergrrl Senior Member

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    I would severely doubt it (at least in the US) b/c of the current "opiate crisis" and many doctors being afraid to prescribe them even when someone is in severe pain from a terminal illness like cancer. I am not sure how this would compare in Sweden where Anne lived but I think some countries are more open-minded with meds than the US.
     
  4. mfairma

    mfairma Senior Member

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    This is so sad. I don't cry much any more, but reading this left me in tears. People just don't deserve to live with this. It's all so much. The terrible suffering and how things get worse with time, how your life becomes more and more circumscribed as time passes, as the illness sets in . . .

    Reading this made me want to share a couple things. In the end of her note, Anne references some CFSAC testimony that I had written anonymously with Billie Moore. I want to share the note that her son left when he took his life, because it so concisely captures, to me, what Anne expresses, the calculus that the most severely ill have to make, and isn't coming up on that link:

    “Since very early on in my illness, when it truly sank in that I was ‘incurable,’ I knew that I felt so bad that without the ‘realistic hope’ that I would get better, I could not live indefinitely in this state. That was over 19 years ago, and I haven’t experienced a day yet which I would be willing to spend decades living life knowing the next day would be the same forever, that’s how unpleasant it’s been….I have needed to have REALISTIC hope (the suffering I serve demands this as non-negotiable). I’ve done extensive research recently, and hope seems to possibly be gone for good for me.”

    On a different note, I also wanted to share a song and a musician who I have been listening to when I'm able, Blue Umbrella, by John Prine. I haven't found any musician that captures the experience of being ill, of course, but his music seems to catch the brokenness and melancholy I feel coming within sight of being ill for a decade. Maybe it will help someone else as it helps me:
     
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  5. Gingergrrl

    Gingergrrl Senior Member

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    Thank you for sharing that and I had never heard that song before and it is beautiful.
     
    Mel9 likes this.
  6. Sushi

    Sushi Moderation Resource Albuquerque

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    Her message is so important--I think we should make a thread for her in the In Memory of section of the forum so that her message is easy to find. It is a memorial for all those we have lost. :cry:

    Edited to Add: There is now a thread in the In Memory of...section. http://forums.phoenixrising.me/index.php?threads/in-memory-of-anne-Örtegren.57075/#post-947388

    It contains many of the posts from this thread (those specifically memorializing Anne) and adds her to our roster of heroes lost to this illness.
     
    Last edited: Jan 11, 2018
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  7. char47

    char47 Senior Member

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    I never had the privilege of knowing you Anne but our world is poorer without you in it. Rest in peace now free of suffering & pain, you will be sadly missed & your memory will live on among us all.

    I can barely tolerate the idea of another year as i am & i am nowhere near as bad as she & so many others. I take my hat off to anyone who endures very severe ME for a wk, never mind years on end. I couldn't have stood as long as she did I'm sure.

    :(
     
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  8. geraldt52

    geraldt52 Senior Member

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    Thanks for posting. John Prine is a little known national treasure. One of my favorite songs of all time, by anybody, is John Prine's "How Lucky".

    BTW, the "singing mailman" reference comes from the fact that Prine was indeed a mailman prior to going to music full time.
     
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  9. geraldt52

    geraldt52 Senior Member

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    And this song should be dedicated to Simon Wessely, and the late Steven Strauss, and Bill Reeves...
    John Prine: "Some Humans Ain't Human"
     
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  10. tyson oberle

    tyson oberle Senior Member

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    What bothers me is that some people will think she ended her life because she was too depressed. And what bothers me even more is that some people will even say "God never lets you suffer more than what you can bear" and they'll say she was weak. I am not sure if I could have lasted as long as she did. She put up a valiant fight. The truth is that everyone has a breaking point. And the next truth is that no one knows if there even is a God. May Anne finally rest in peace.
     
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  11. mfairma

    mfairma Senior Member

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    He is. I'd heard Angel from Montgomery years ago, but only really started listening to him in the last few months. I used to absolutely love Bob Dylan, and still do, but Prine's storytelling is more meaningful and vivid and his wit is more good hearted and sorrowful to Dylan's sardonic qualities. I particularly enjoy the anecdotes he tells on some of his live albums. He is indeed a gem.
     
  12. perrier

    perrier Senior Member

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    My modest understanding is that she tried many many treatments, some made her worse. I just don't know how long many other severely ill patients will wait. The truth is there really aren't many treatments for the symptoms: ok, sleep meds, ok pain meds for muscle, bone pain, etc., but what is there for constant flu feeling, or PEM? I am really devastated by the fact that this lovely young woman had no relief from the constant burning of her skin, and all the other symptoms. I am devastated that we go to the moon and mars, and cannot help these young people who are living under house arrest: innocent, lovely people, and no outrage out there
     
    Last edited: Jan 11, 2018
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  13. lauluce

    lauluce as long as you manage to stay alive, there's hope

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    argentina
    when my disease started, at 13 yrs all, that was one of my first symptoms, hypersensitive skin, the feel of my clothes and the hair in my head felt "increased" and it me me suffer very much. However, it was nowere near to what this woman described, I can imagine however what he felt, something similar to me but extremely worse. I can assure you that it must have been hell in earth
     
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