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Canada joins in XMRV ME/CFS research. Could we become a significant player?

Discussion in 'XMRV Research and Replication Studies' started by shrewsbury, Aug 28, 2010.

  1. Boule de feu

    Boule de feu Senior Member

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    I live in Ottawa (Ontario) but I am a member of the AQEM (ME association of Quebec). I received an invitation to attend Dr. Jolicoeur's presentation (June 20). I was not well enough to attend :)Retro frown:) but I received a summary (newsletter) of what he did cover during his presentation. You probably know all about this already. If not and if you are interested, I will be happy to right it down for you.
  2. taniaaust1

    taniaaust1 Senior Member

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    Sth Australia
    Yeah i thought that, so did some detective work. They both did at least one study on Hep C together http://www.ncbi.nlm.nih.gov/pubmed/2117282
  3. sensing progress

    sensing progress Senior Member

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    Good find! So it would appear they know one another.
  4. shannah

    shannah Senior Member

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    Hi Boule de feu,

    I haven't seen any report of the presentation you've mentioned. In fact, much mystery seems to surround Jolicouer's work. So anything you could share would be very much appreciated. Looking forward to reading it.
  5. shrewsbury

    shrewsbury member

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    hi boule de feu - I agree with Shannah. It would be lovely if you could share waht you know about Jolicoeur's work. I'm very eager to know. Thanks!

    Nice digging Tania! so Alter and Houghton (U of A) did a paper together. Seems good news.

    I tried to dig further into national registries for research.

    The mefmaction network doesn't have an official registry yet. They are redoing thier website and are looking into this. In the meantime, you have to check their site under projects, research to see if anything is posted (eg the Dr Stein et al study is now posted there). This is the group associated with the CCD, the Calgary 2006 conference & the 2011 IACFSME conference

    The FM-CFS site does have a registry I don't know anything about this group.
  6. urbantravels

    urbantravels disjecta membra

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    Alter was the "discoverer" of Hepatitis C, in the sense that he was the first to discover there was a hepatitis virus that was neither A nor B, - what he called "non-A, non-B hepatitis." Others were involved in the final identification of the virus that became known as Hepatitis C.
  7. hensue

    hensue Senior Member

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    and now there are variations of the Hep c virus. My husband has hep c.
  8. shrewsbury

    shrewsbury member

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    and they worked together on blood screening methods

    "Alter has received recognition for his research including the 2000 Albert Lasker Award for Clinical Medical Research for his work leading to the discovery of the virus that causes hepatitis C. Alter and his co-awardee Michael Houghton were recognized for the development of blood screening methods that essentially eliminated the risk of transfusion-associated hepatitis in the U.S."
  9. Boule de feu

    Boule de feu Senior Member

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    Ottawa, Canada
    I'm sorry I took so long. I have been fighting major brain fog + headaches. I will do my best to post whatever I can today. I'll come back later if I can't finish. It's quite long. I'm not sure that you will learn much from Dr Jolicoeur's presentation.
    (Also, take note that I'm a French Canadian - les maudits franais ! lol - the translation might not be as perfect as I would like it to be.)

    Before I start, one question: Am I allowed to post this? It comes from a newsletter that was sent to members only. I'm wondering if I can translate it and put it on this forum. There is probably a copyright?
    Maybe I could send it using the "private message" function instead? I want to make sure it's allright to do this first before posting.
  10. Sing

    Sing Senior Member

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    Hi Boule de feu!

    I was in the Ottawa area this summer--Gatineau, to be precise. This is a favorite place of mine, including for the French language. I am glad you are here! When you write, I will still feel connected to Gatineau.

    Maybe if you could write a summary of this summary of Dr. Jolicoeur's presentation, in translation--I don't see that there would be any problem about that.

    Sing
  11. Sing

    Sing Senior Member

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    New England
    Canadians* have already led the world with the 2003 Canadian Consensus Definition for ME/CFS and the first (only?) text book called, The Clinical and Scientific Basis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, ed. by Dr. Byron Hyde in 1992, which is still almost all relevant and a goldmine of information. Next year in September, 2011, in Ottawa, there will be an International Symposium on ME/CFS in which, as I understand it, they will review the XMRV (human gamma retroviral) research, update the CCD, and make their latest recommendations of clinical guidelines for physicians.

    I would call this A Leadership of Intelligence.

    Lydia Neilson, the Founder and CEO of the National ME-FM Action Network deserves special mention for her leadership and organizational work from the beginning, starting with Dr. Hyde's Nightingale Research Foundation, then branching off to www.mefmaction.net

    *I say Canadians, rather than the Canadian or any provincial government, because these accomplishments were led and/ or made by Canadians rather than by any governmental bodies. Some acknowledgement and help from government sources came in after the fact--kind of like what we have seen in the USA where the leadership has come from Annette Whittemore, then the WPI and only secondarily are we seeing governmental agencies helping and beginning to acknowledge this work.

    Sing
  12. shrewsbury

    shrewsbury member

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    you may have brain fog, but this seems good thinking to me.

    If you feel comfortable PMing the info - I'd love to hear about what Jolicoeur is doing.

    And please don't waste an iota of energy worrying about perfection of translation - votre anglais est mieux que mon franais
  13. Kati

    Kati Patient in training

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    Boiule de feu, I would also be interested in finding out about the Jolicoeur presentation, I am also French Canadian- so if you need help with translation I can help.
  14. Boule de feu

    Boule de feu Senior Member

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    Ottawa, Canada
    I'm done translating.
    If you have requested a copy and I haven't sent you one, please let me know.
    It will be my pleasure to forward one to you (free of charge! h h!)

    Dr. Jolicoeur's message is one of hope.
  15. shannah

    shannah Senior Member

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    Received copy Boule de feu and thank you so much for doing this.
  16. Daffodil

    Daffodil Senior Member

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    hi all. may i see this jolicoeur thingie?

    ps....grew up in quebec myself:)
  17. omerbasket

    omerbasket Senior Member

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    Send "Boule dr feu" a private message and he will send it to you.
  18. Boule de feu

    Boule de feu Senior Member

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    Boule de feu is a "she". Yes, I'm very hot! (lol)

    Already sent to Daffodil... =-)
  19. Boule de feu

    Boule de feu Senior Member

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  20. Sing

    Sing Senior Member

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    Jolicoeur's new study--wants XMRV positive controls!

    Received the following this morning from www.mefmaction.net

    Canadian XMRV Viral Research Study

    Dr. Paul Jolicoeur is a researcher in Montreal who is doing research on the virus XMRV.
    He is looking for patients to act as positive blood controls for his study on XMRV. He is requesting that due to distance difficulties only patients in Ontario diagnosed with ME/CFS who have previously tested positive for XMRV on the blood test by the Reno Nevada testing centre contact him at his address. He needs blood samples of positive patients to act as positive controls in his research study about the SMRV virus. He wants you to contact him directly at:

    Paul Jolicoeur M.D. PhD.
    Clinical Research Institute of Montreal
    110 W Pine Aven
    Montreal, Quebec,
    Canada H2W 1R7
    Tel: 514-987-5569
    Fax: 514-987-5794
    E-Mail: jolicop@ircm.qc.ca


    Lydia E. Neilson, M.S.M. , Founder
    Chief Executive Officer
    NATIONAL ME/FM ACTION NETWORK
    http://www.mefmaction.net

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