Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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$1 million donated to Open Medicine Institute for study

Discussion in 'General ME/CFS News' started by Nielk, May 6, 2013.

  1. Nielk

    Nielk

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  2. RUkiddingME

    RUkiddingME Senior Member

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    That's great news!! I apologies I hadn't seen this thread before i posted the same article and I can't seem to be able to remove it
     
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  3. parvofighter

    parvofighter Senior Member

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  4. Bob

    Bob

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  5. Yogi

    Yogi

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    Excellent description of ME by the Reuters Press Release:

    http://www.reuters.com/article/2013/05/06/omi-research-me-cfs-idUSnPNDC07760 1e0 PRN20130506

    About ME/CFSME/CFS is a complex chronic disease affecting multiple body systems/organs. The disease is characterized by abnormal persistent or relapsing fatigue, post-exertional malaise/fatigue, sleep dysfunction, cognitive dysfunction, muscle/joint pain and headaches. Post-exertional malaise/fatigue, which is a hallmark of the disease, describes the worsening of symptoms and incapacitating cellular-level fatigue experienced following physical or mental exertion, sometimes even brought on by walking across a room.
    The prevalence of ME/CFS is much higher than many realize, affecting children, teens and adults. There are few effective treatments and no diagnostics, it is currently diagnosed only by exclusion. In the US, the illness is more prevalent than lung cancer, leukemia and AIDS combined. (CDC and SEER Report, 5-year prevalence rates).
     
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  6. Allyson

    Allyson *****

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    thanks Yogi - good succinct definition..

    It is interestingtthat reading it - the symptom overlap with EDS - Ehlers- Danlos Syndrome is strikiing.

    And as EDS is a connective tissue disease it is likely that ME is an CTD as well, at least for some. Makes some sense as connective tissue is all throught the body and thus could explain the multiplicity and widespread nature of symptoms in ME.

    More at this link for anyone interested in the overlap.


    http://forums.phoenixrising.me/index.php?threads%2Fis-me-due-to-ehlers-danlos-syndrome-stretchy-veins.20351%2F


    Lets how that funding has some good results - great news indeed.

    Cheersl

    Ally
     
  7. Nielk

    Nielk

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    The Open Medicine Foundation Awarded Grant from the VMware Foundation to Accelerate Development of Patient-Centric Health Care Model


    Wall Street Journal article here.
     
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  8. Firestormm

    Firestormm Guest

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    I'd like to learn more about what exactly this money will be used for and in what way it is anticipated to be of benefit to pwme. But $1m for research is $1m for research I guess :)
     
  9. Ember

    Ember Senior Member

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    Click on Dr. Kogelnik's presentation here and watch from 18:45 – 22:00.
     
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  10. Firestormm

    Firestormm Guest

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    Thanks Ember. I shall do so after a snooze :thumbsup:
     

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