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ME CFS conference in New York 20th November 2013 relating to treatment .

Discussion in 'General ME/CFS News' started by denlander, Sep 13, 2013.

  1. JayS

    JayS

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    It's a press release. Not an article.
     
    justinreilly, Roy S and leela like this.
  2. Firestormm

    Firestormm Guest

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    A press release on behalf of/written by whom?
     
  3. leela

    leela Slow But Hopeful

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    The conference?
     
  4. Firestormm

    Firestormm Guest

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    Seems to have originated from some media company, though who wrote it and obtained the quotes, reached the conclusions about the incomplete and unpublished research, I don't know.
     
  5. Roy S

    Roy S former DC ME/CFS lobbyist

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  6. ukxmrv

    ukxmrv Senior Member

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    Gupta isn't a Dr. He's a snakeoil salesman from the UK. I know patients who have seen him in his London office and he tells them that their disease is nothing more than the Amygdala being stuck on in a flight or fight mode and he teaches them relaxation techniques to supposedly calm it all down.

    Shocked to see someone like that at the conference.

    A huge thanks to Justin and Citybug for attending and feeding back to us on the main points. I know how hard it is to follow everything and try to condense it down. Would loved to have been there and your reports make me feel like I was. You'll probably crash now after this and I wanted to say how much I appreciate your reports, especially when they take more out of you.
     
    cigana, peggy-sue, beaker and 5 others like this.
  7. JT1024

    JT1024 Senior Member

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    New "kids" on the block. While there is much the same, the entry of Eric Schadt is significant. Did you bother to check him out? He is not one to care about politics or academic hierarchy. If you have any understanding of science, you may have better appreciation for this conference if you check him out.

    IMHO, this IS big news!
     
    SOC and JohnnyD like this.
  8. beaker

    beaker CFS/ME 1986

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    I posted this info a couple years ago that I received after much effort w/ contacting Dr. E. and having a friend, who is a patient of his, getting clarifications of his answers. Can't find the post. But I found the email.
    I quote this from an email from his office. He has 2 foundations I have donated to the second one listed and received thank you letters back from Dr. E. that it went where it was meant to go. Since I send it to Dr. E. I feel confident that it gets to the right place.
    PS it is tax deduct. if that makes any difference. I *think* they both are.

    ETA: I just saw the post about the fundraising thread for enlander. If the group listed ( sorry already gone from my brain) is like some of the others, they may take a cut. It may be better to donate directly via options below.

     
    Last edited: Nov 24, 2013
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  9. beaker

    beaker CFS/ME 1986

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    Interesting. Do you have any more info on what was said about diamox ? For awhile back ...... 20+ years ago. Cheney had just about everyone on it for head pressure/headaches and other neuro stuff i don't remember any more. Bell used it as well.
    I had a nasty reaction to LP and went on it. That and IV fluids several times a week for a couple years did more for me than anything else I have ever tried. ( was on the diamox longer, couldn't keep getting fluids, insurance and different dr. ) Got me able to do more than lay absolutely flat and straight in the dark. Got me up a few notches. A turning point.
    I went off it when I wanted to give florinef a try. ( diamox is contraindicated ) diamox was the hardest med I ever had to wean off of. My current dr. said he didn't want me ever back on it. But sometimes I do think about it.
     
  10. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    may i ask why did your current doc say never diamox and is she or he an ME doc?
     
  11. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Did I forget to mention during the Q & A someone asked if anyone there had been contacted by IoM to be on the ME redefinition panel. Nancy Klimas was the only one (of her, Dan Peterson, Eric Schadt, Judy Mikovits, Derek Enlander, Frank Ruscetti and Ashok Gupta)
     
  12. beaker

    beaker CFS/ME 1986

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    Because of how horrible it was to go off of it. Not an ME doc. A rheumy academic I have been teaching.
    He reads what I bring him. He is willing to try most things that come up.
    He has an interest. But his grant money and lab lead him more toward "more popular" auto immune disorders and related research.
     
    Last edited: Nov 25, 2013
  13. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Beaker, Wow that's great that you have found a specialist who is willing to let you teach him and that you do! Good or you and him!
     
  14. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Wally,

    Let me add another good thing Mt. Sinai is doing- it has allocated funds for two fellows in ME per year. I know at least one doctor has started his fellowship. This is crucially important, bc as we all know, the few ME experts out there are getting very close to or beyond retirement age and there are few young doctors taking it up. A fellowship takes a very qualified specialist medical doctor and teaches him in a field for one year. THis is great because we will get two new highly educated and intelligent doctors to get specialized in ME every year. This is a great start.

    BTW, Jay reported back to me that he has discussed the situation with the office and made it clear these things need to be done. Jay had already started on some aspects like setting up and managing a Facebook page and they plan to get things together, but it will take time, especially with Jay and everyone now focused on the IoM situation.
     
    Last edited: Dec 4, 2013
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  15. Nielk

    Nielk

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    Mount Sinai ME CFS Center conference (NOV 2013) DVD video discs of the talks are now available on Ebay..... search Sinai CFS conference 2013....( $8 each ; $25 the set of 5)
    Talks approx 40 mins each are by Eric Schadt ( genetics if ME CFS), Dan Peterson (Treatment using Vistide and other modes); Nancy Klimas (new implications in Immunology); Judy Miklovits ( Followup on the XMRV debacle); Derek Enlander ( the Mount Sinai Post Exertion Study and new developments in Treatment)
     
  16. Kati

    Kati Patient in training

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    You got the link to that ebay product?
     
  17. Nielk

    Nielk

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    Kati likes this.
  18. Dolphin

    Dolphin Senior Member

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    I was just wondering whether anyone has got their DVDs? I paid in January and haven't received anything. If nobody has received any DVDs, I'll hold off contacting them; but if one or more people have got dvds, I want to follow it up. Thanks.
     
  19. Nielk

    Nielk

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    Video of Dr. Enlander's presentation at conference.
     

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