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Lisa Sanders - Every Patient Tells a Story

Discussion in 'Action Alerts and Advocacy' started by Bevbh, Nov 2, 2009.

  1. Bevbh

    Bevbh

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    Austin, TX
    I was at the Texas Book Festival on Sat (2nd time I made it there in the 10 years they've been holding it) and ran into a friend who was on his way to see Lisa Sanders author of Every Patient Tells a Story and medical consultant for the TV show House, so I went along. It was a good talk but she presented an idealized picture of a world where internists have the time to track down interesting cases. During the questioning she did talk about the shortage of GPs and Internists and the financial constraints that keep them from spending enough time with patients. She got into the issue of Drs being uncomfortable with uncertainty some. I wanted to ask a pointed question about that leading to blaming the victim but couldnt think of how to word it without coming across as a really angry confused person. I don't think well on my feet and also she seemed pretty sympathetic and I didnt want to blame her for the shortcomings of a whole industry.

    So, I went with the crowd that followed her to the book signing tent and started from another point that she made which is that sometimes finally getting a proper diagnosis is as much psychologically and spiritually healing as the physical treatment that follows. That people need to know the cause of their suffering for it to have some kind of meaning to fit into the story of their lives. I told her that I was part of a population of patients that have just learned that our chronic illness may be caused by a retrovirus and that we were relieved to finally (almost) know. She immediately said, Oh you have CFS and I said yes. She said that she wants to write about that next in her NY Times Mag column, so I told her about Hillary Johnson and Osler's Web which she wrote down. Then I tried to find out what she knew about concern about the blood supply and she immediately went into this Oh it's just one preliminary study thing from one lab and I corrected her that 3 labs were involved. I just wanted to get a feel of how far this news has spread in the medical community and how far their thinking has led them. So maybe I planted a seed and we will see a House episode where someone has CFS from a blood transfusion.

    Lisa Sanders said she gets email all the time from people with interesting Dx stories and from sick people desperate for a Dx. Her email address is lisa.sandersmd@gmail.com. It might be useful to send CFS stories to her.
  2. Koan

    Koan Be the change.

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    Hi Bev,

    I'm so impressed with how you handled this exchange! The care, intelligence and subtlety you employed is remarkable. Knowing when to bide your time and quietly hanging in. It is, as you wrote, so easy to come "across as a really angry confused person". :D Well done!

    I'd be really happy to see another piece in NYT. That would make, with today's letter to Ed., 4 or 5 I think.

    I can't imagine what the writers of House would do with all of this, either. They have ridiculed it in the past. But, another piece in NYT would be fantastic and everything she learns as she researches that... well, who knows. Could make an interesting episode about Dr.s being wrong which is a recurring theme on the show - even if House has to turn out to be right somehow even when he's wrong. It would be great if XMRV/ME/CFIDS/CFS... was a piece of that story one day!

    Anyway, I thank you for handling yourself and this important information so adroitly. :cool:

    Peace out,
    Koan

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