1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Never Ask Us if We're Hungry -- The Answer's Always No
There are three of us here and for many years, none of us ever got hungry. When our brains would turn to mush, when our faces would go numb, and we would start the invisible vibration which is the signature dance of ME/CFS, we knew we needed to eat.
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Not much ME/CFS research is funded in Canada (as of March 2008)

Discussion in 'Action Alerts and Advocacy' started by Dolphin, Jan 22, 2010.

  1. Kati

    Kati Patient in training

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    Julius, I sent an email to dr Jolicoeur yesterday (doing a replication study apparently) interestingly the institute he works wiht denies they are doing any XMRV studies. it's called IRCM- Institut de recherche cliniques de Montreal.

    Also awaiting answers but not holding my breath- I have asked them if there in anything I could help them to fund researches and whether they had contacts in British Columbia


    Be patient on your asnwers too- they probably need to digest the information.
  2. boomer

    boomer Senior Member

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    I imagine they are trying to keep the research quiet or else Dr. Jolicoeur will spend all his time answering emails.

    I was justing wondering why some of the people at the WPI who have been successful in identifying the retrovirus don't visit other labs that are not reponding because they may be having difficulties repeating the findings. Would it move things faster if someone went to Dr. Paul Jolicoeur at University of Montreal and provided assistance or is there some scientific reason they shoudl not?
  3. julius

    julius Watchoo lookin' at?

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    Canada
    I think normally Dr Joliceur would have to contact WPI and ask for their help. I don't think Judy would just show up on their doorstep.
  4. julius

    julius Watchoo lookin' at?

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    Kati,

    what do you mean they 'deny' it. Did you hear from them or is this from something you read.
  5. boomer

    boomer Senior Member

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    When I contacted the University a while back the lady that answered the phone sounded like she didn't understand what I was referring to but she took the message if I recall. It was her second language too. I know he said they got enough blood samples from the first group of people a few weeks ago when he replied to my email.
  6. Kati

    Kati Patient in training

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    Julius due to private info shared I will answer you privately/
  7. boomer

    boomer Senior Member

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    Hope they have not stopped the testing.
  8. Kati

    Kati Patient in training

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    Hopefully not and if you have had contact with them ,maybe a kind e-mail letting them know that Dr Judy would be happy to help out finding the virus could be a good thing.

    If they're not answering much, my take is, they're too busy, they don't answer patients, or they're trying to figure out their stuff by themselves or with outside help...

    Patience is one of these good virtue to have. Unfortunately I tested low lately.
  9. Sing

    Sing Senior Member

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    New England
    In case any of you aren't members and want to see what the winter newsletter covers:

    QUEST NO. 82WINTER 2009 HIGHLIGHTS
    * ANNOUNCEMENT - IT'S OFFICIAL - OTTAWA 2011;*
    NETWORK TAKES ON MAJOR PROJECT;
    * LETTER FROM IACFS/ME PRESIDENT ON OTTAWA 2011;
    * INFORMATION FOR PRESENTERS FOR OTTAWA 2011;
    * ANNOUNCEMENT OF LEADERSHIP TRANSITION AT CDC;
    * NETWORK ANNOUNCES 2 ADDITIONS TO ITS MEDICAL ADVISERS;
    * CANADIAN BLOOD SERVICES ON XMRV AND THE CANADIAN BLOOD SUPPLY;
    * CIHR IDENTIFIES FMS AND CFS RESEARCH PROJECTS;
    * CIHR UNDERFUNDS FMS AND ME/CFS RESEARCH;
    * NATIONAL CFIDS FOUNDATION ADDS INNOVATIVE RESEARCH GRANT FUNDING;
    * NETWORK'S REQUEST TO PUBLIC HEALTH AGENCY OF CANADA;
    * AND MORE ON CPP GUIDE, LINKS ETC.
    Publishing date: Week of February 15, 2010. QUEST is the quarterly newsletter of the National ME/FM Action Network which is free with annual membership.
    Lydia E. Neilson, M.S.M.Chief Executive OfficerNational ME/FM Action Network512 - 33 Banner RoadNepean, ON K2H 8V7 CanadaTel. (613) 829-6667 Fax (613) 829-8518E-mail: ag922@ncf.ca
    Web: http://www.mefmaction.net

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