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.

Listening to Roger King (author) and Wilhelmena Jenkins (scientist) on thier CFS

Discussion in 'General ME/CFS News' started by roxie60, May 9, 2012.

  1. roxie60

    roxie60 Senior Member

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    Been comforting hearing them describe their experiences with CFS. They both have had it a very long time. I think I heard it would be posted in a couple of days at www.youtube.com/solvecfs

    Worth a listen if you are struggling to accept CFS in your life and its impact on work family and friends

    It has been hard to sit and listen for an hour 15 mins, think there is 15 mins more not sure
     
  2. ixchelkali

    ixchelkali Senior Member

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    I agree that this was worth listening to. Lots of that "oh, yeah," feeling of recognition, and I laughed out loud a few times. I'm looking forward to listening again when the recording is posted.

    I also recommend Roger King's book, Love and Fatigue in America. Good read, even for people who don't have ME/CFS.
     
  3. Snow Leopard

    Snow Leopard Hibernating

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  4. roxie60

    roxie60 Senior Member

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    Might find a link to the seminar at research1st.com. I think that is the name. Nevermind I see snowleopard just posted direct link.
     
  5. Snow Leopard

    Snow Leopard Hibernating

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    This interview definitely speaks to me. Thanks for sharing it.
     
  6. seanpaul

    seanpaul

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    wow Im a young scientist with the same illness and the same problems, its nice to hear people express the feelings I hold, I just hope some of us (ME sufferers) can get better.
     
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  7. PNR2008

    PNR2008 Senior Member

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    Wilemina kept using a word I totally identify with and that is "heartbreaking". This illness has been the biggest heartbreak of my life. I keep going on because I don't know what else to do, it's just in me to survive, although sometimes I wish it weren't. For some time now the big decision of the day is what to put in the dishwasher and what to handwash. Many of you know, all I can do is rest and wait for some strength.
     
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  8. Ember

    Ember Senior Member

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    I'm expecting Roger King's Love and Fatigue in America to arrive any day now, and I'm looking forward to this novel like none other. I think we owe Roger King a debt of gratitude. Here are some quotations from last week's review by Steve Pfarrer:

    http://www.gazettenet.com/2012/05/11/leverett-author-describes-surprising-effects-of-illness

    (Perhaps this review deserves its own thread.)
     
    SickOfSickness likes this.
  9. roxie60

    roxie60 Senior Member

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    I'm looking forward to getting his book, I wonder if it is on audio for the CFSers who have trouble reading, staying focused?
     
  10. Liz

    Liz

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    I thoroughly enjoyed hearing Wilhelmina Jenkins and Roger King talk, but I was angered by the lack of a prepared moderator. At times W.J. and R.K. would almost seem to discuss issues among themselves and not really know when to move on. At one point, R.K. paused in the conversation and said, "Hello?" as if he, too was wondering where the moderator was. Also, the damn thing went on for well over the advertised one-hour timespan. Some of us are too sick to hang in there beyond one hour. Great guests. Bad organization and moderation.
     
  11. ixchelkali

    ixchelkali Senior Member

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    I think Roger King said that it's not on audio but he hoped it would be.
     
  12. roxie60

    roxie60 Senior Member

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    if i recall there were some technical difficulties, all three were in dif locations, life is short, ill focus on the good which was the moderator making the effort to raise awareness of this illness.
     
  13. Sing

    Sing Senior Member

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    I really enjoyed this interview and didn't mind any spaces and glitches. (The ME brain so often creates "spaces, glitches, and time running over" not only in my own mind but in interactions too.)The speakers both expressed their experiences with ME very, very well, the ways this is not understood by others, what it does to a life. With this condition, we end up living in a strange reality which is really hard, not only to live, but also to identify, to "own" and to convey effectively, given the experiences and expectations from a healthy past and our social environment. The achievement of Wilhemina Jenkins and Roger King, is that they do convey all of this effectively, and this helps me take another step forward in my own consciousness and ability. I rise a litle more out of confusion into clarity. I ordered the book and have no doubt I will value it.
     
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  14. Sing

    Sing Senior Member

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    I finished Roger King's book last night, reading the whole thing in 24 hrs. It is well done and I hope we can discuss it here. I think that his experience growing up in a post WWII English working class background, then as an academic intellectual, then as a UN worker in many different cultures of the world-- all before he got this illness-- enable him to look at this illness in all its strangeness, both in terms of his internal experiences and how it is received in the outer world. It is a very strange trip he takes the reader on both in his subjective experience of ME/CFS and across the USA, as he moves to different places while struggling with this illness.
     

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