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10th International IACFS/ME Research & Clinical Conference

Discussion in 'General ME/CFS News' started by Sing, Jan 27, 2010.

  1. Sing

    Sing Senior Member

    New England
    The National ME/FM Action Network is hosting
    The 10th International IACFS/ME Research & Clinical Conference, Translating Evidence into Practice: Chronic Fatigue Syndrome, Fibromyalgia, and Related Illnesses, September 22-25, 2011

    LOCATION: Crowne Plaza Hotel

    This conference will consist of a 4-day professional meeting
    and a one day (September 22nd, 2011) patient meeting which will
    coincide with the professional meeting. It is anticipated that this
    event will be accredited for continuing medical education.

    The professional conference themes focus on fatigue, pain,
    sleep, pediatrics, cognition and brain function in ME/CFS,
    Fibromyalgia and Related illnesses and will be addressed in
    scientific sessions on assessment and treatment and original research
    in the fields of immunology, virology and neuroendocrinology. There
    will also be workshops for clinicians and researchers.

    The patient meeting will focus on matters that are of
    concern to them i.e. diagnosis, treatment, disability and legal issues etc.

    Please visit our website at and
    find out how you can help us make this important conference a
    success. It is the first time that such a conference will be held in Canada.

    We need your help to raise $150,000 which is the cost of
    this conference.

    If you are not a member, consider becoming one or make a
    donation. Our membership includes our quarterly newsletter
    "QUEST". No donation is too small and all receive a tax receipt.

    To find out more about the IACFS/ME and its activities,
    please visit its site at

    Lydia E. Neilson, M.S.M.
    Chief Executive Officer
    National ME/FM Action Network
    512 - 33 Banner Road
    Nepean, ON K2H 8V7 Canada
    Tel. (613) 829-6667 Fax (613) 829-8518
  2. Kati

    Kati Patient in training

    150 grands is a lot of money!!!

  3. CBS

    CBS Senior Member

    IACFS/ME supporter

    Hi Katie,

    I have what is perhaps a a slightly different view of the IACFS/ME. This is the top research organization in CFS/ME world wide. The IACFS/ME board is composed of many of the leading people in the field (Klimas, Kerr, Vernon - who I agree with Cort is doing some very exciting things with the CAA, Dr. Friedman - UMDNJ - who in testifying before the HHS CFSAC in October '10 took one of the most courageous stands on our behalf that I have ever seen).

    I have exchanged e-mail with the IACFS/ME President, Dr. Fred Friedberg and not only was he incredibly quick to acknowledge my communication, he took a letter I wrote with comments on the need for clear and concisely defined research cohorts to the entire IACFS/ME board for discussion within a week. He responded a day later and the IACFS/ME will be acting on my suggestion (they were already working towards what I see as THE foundation of any good CFS research down the road).

    You may have seen the thread. You can find it here:

    The IACFS/ME was also just awarded an open-ended grant by Hemisperix (makers of Ampligen) to draft new and comprehensive set of guidelines for diagnostic and treatment in clinical settings (for your doctor). Dr. Bateman, a former IACFS/ME board member is also participating on the committee drafting these clinical guidelines.

    The bottom line for me is that a group like this is comprised of some very top folks who are volunteering their time and while they may differ in some of their views, they are working extremely hard on our behalf and in their world, $150K is a drop in the bucket (the group truely does represent the entire globe) and they could really use our support (believe me, I've been in one of the top research and patient referral centers in the country and they are not wasting a dime nor are they rolling in cash). I know of individual graduate students in other fields that have more grant money at their disposal.

    I guess I am asking that everyone consder supporting this group. I am.

    Warm regards,

  4. Kati

    Kati Patient in training

    Shane, I agree with you 100%. I am just looking at the size of the task- for us Canadian to host the meeting- the amnt of money that is needed to host is a lot of money. Don't get me wrong, I have given a first donation to help them out but it's not going to go too far at the moment- I am hoping our government will help out a bit from some of their budgets. Somehow.

    If I am well enough and my bank account agrees to it would love to make it out there. Also for those that are tempted, September is a great month to visit Ottawa, the fall colors will be fantastic shades of red, orange and yellow.
  5. Dolphin

    Dolphin Senior Member

    One way one can support the IACFS/ME is to join. You get sent their bulletin and newsletter by E-mail so basically your membership is like a donation. Having more patients as members might ensure they are careful how they act as they wouldn't want to annoy their membership.

    But that money is separate from the money for the meeting, I imagine.
    I agree with Kati - my first thoughts were $150,000 is quite a lot of money to have to raise.
  6. usedtobeperkytina

    usedtobeperkytina Senior Member

    Clay, Alabama
    Wasn't the professor who was going to lose his job with IACFS/ME. What's the latest on that?


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