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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. Dolphin

    Dolphin Senior Member

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    Not exactly sure what you are saying - that they would specifically like grant applications on XMRV and CFS? (I did read the first page, just not sure what your point is - I did make a few points that you could be replying to).
     
  2. Kati

    Kati Patient in training

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    Change done Tom, thank you
     
  3. boomer

    boomer Senior Member

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  4. Kati

    Kati Patient in training

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    Very interesting Boomer, will check out the health research link later tonight
     
  5. Dolphin

    Dolphin Senior Member

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    Research funded

    Maybe somebody can do this in a fancier way but here are links to the four funded studies that come up when one searches for "chronic fatigue syndrome":

    (Note: Chronic Fatigue Syndrome doesn't make the keyword section of the third one)

    http://webapps.cihr-irsc.gc.ca/fund...version=CIHR&p_language=E&p_session_id=697734

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    http://webapps.cihr-irsc.gc.ca/fund...version=CIHR&p_language=E&p_session_id=697734

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    http://webapps.cihr-irsc.gc.ca/fund...version=CIHR&p_language=E&p_session_id=697734

    ---------------
    http://webapps.cihr-irsc.gc.ca/fund...version=CIHR&p_language=E&p_session_id=697734

     
  6. julius

    julius Watchoo lookin' at?

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    So a third ($276 326) of our CFS funding over ten years ($870 000) went to a single clinical psychiatric study!?!
    Oooohhh! now I'm really mad.

    BTW tomk, I only see two studies there, and one of them is for mono.
     
  7. boomer

    boomer Senior Member

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    It is unbelieveable that this disease has been spreading over the past decades while every government turned their backs on this huge population.
     
  8. Dolphin

    Dolphin Senior Member

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    I put them up in stages - add one, save it, add another. Those are the four you get with "chronic fatigue syndrome". As you say, one is for mono. Third one doesn't look like it involves CFS patients. 4th one which is on CFS only got $17,500.

    I'm not sure how they get up to $874,000. A few studies show up for "chronic fatigue" but they don't add up to the correct amount (none appear to involve CFS patients). Results for" CFS" aren't relevant (it's an abbreviation for other phrases). "Myalgic" just gives the fourth one above.
     
  9. julius

    julius Watchoo lookin' at?

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    Actually, the last two seem reasonable.....especially the rnase l one. Although that one wasn't specifically CFS.

    And I can't complain about the Accupuncture one either. Personally I think it's good to look into non pharmaceutical approaches.

    So, overall, not too bad....but still a measly budget overall.

    How did you do that search? I'd be curious to see how much money we have put into other diseases.
     
  10. boomer

    boomer Senior Member

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    If you have a retrovirologist research center in your city in Canada, you may want to send them the letter. You may know an experienced cfs doctor in your city able to inform about good blood samples. It doesn't hurt to try.
     
  11. Dolphin

    Dolphin Senior Member

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    That's correct: http://www.cihr-irsc.gc.ca/e/826.html

    Here are the equivalent details for Multiple Sclerosis: "The total dollar amount for the specified search criteria is $71,664,429." which is 103 times the figure that shows up for "Chronic Fatigue Syndrome"
     
  12. Kati

    Kati Patient in training

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    Boomer, my XMRV results should come within 2 weeks, and if I am positive, I will certainly either write them a letter or else use the leverage of the speclialists I have seen lately to help me out.
     
  13. julius

    julius Watchoo lookin' at?

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    re: Contacting Universities

    I found this site http://www.aucc.ca/policy/priorities/university-research_e.html which is the Association of Universities and Colleges of Canada, Advocacy and Research. On the site, Caroline Lachance is named as the primary contact. I sent her the following email.

    Dear Ms. Lachance,

    I am writing to request information or assistance regarding funding for research into the novel infectious retrovirus XMRV.

    In a recent article published in Science Magazine (Lombardi VC, Ruscetti FW, Das Gupta J, et al. (October 2009). "Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome". Science 326 (5952): 585-9), researchers have discovered a new infectious retrovirus which was found to infect up to 4% healthy controls.

    The study demonstrates that, in vitro, the virus is transmissible via blood plasma. Furthermore, it has been liked to prostate cancer (Schlaberg, Robert; Daniel J Choe, Kristy R Brown, Harshwardhan M Thaker, Ila R Singh (2009-09-22). "XMRV is present in malignant prostatic epithelium and is associated with prostate cancer, especially high-grade tumors". Proceedings of the National Academy of Sciences of the United States of America 106 (38): 16351-16356.)

    A fellow sufferer recently contacted The Minister of Health, Leona Aglukkaq informing her of this discovery.

    In response, Minister Aglukkaq wrote;

    "Public Health Agency of Canada scientists have reviewed the findings and have been in contact with the Centers for Disease Control in Atlanta, Georgia, USA."

    "While the CIHR has not yet funded research on the relationship between the XMRV and CFS, it would welcome funding applications
    from researchers interested in pursuing further work in this area of
    research."

    I am writing you to ask for your assistance in notifying relevant research bodies that the government is interested in funding research into this retrovirus. I believe it is important for us to understand the nature of this retrovirus regardless of it's possible relationship to ME/CFS.

    If you can provide any information or assistance in this matter it would be greatly appreciated.

    I have attached a copy of the letter from the Minister of Health.

    Thank you kindly for your attention,
     
  14. Kati

    Kati Patient in training

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    OMG, budget allocated to HIV/ AIDS so far is 296 millions!!! Can we have the part of the pie too?
    Asthma for 2009-2010 is 150 millions., cataracts 6 millions, thyroid 31 millions, cancer 1.2 billion, cochclear prosthesis 3 millions, epilepsy 94 millions, autism 42 millions.

    Of note cfs ranks just about equal in terms of funding with syphilis at 694 thousands.
     
  15. julius

    julius Watchoo lookin' at?

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    6 million for cataracts???
     
  16. julius

    julius Watchoo lookin' at?

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    146 mil for depression
     
  17. Kati

    Kati Patient in training

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    What I think is the governemnt will give out some fund to peple that ask for it- so Julius I think you had the right attitude in asking universities to look into CFS research, or this novel retrovirus- with hope it will interest researchers. It may be valuable to approach molecular biology department at major universities, and medecine schools as well. Perhaps the virology section of your provincial CDC.

    Every little bits help.
     
  18. Dolphin

    Dolphin Senior Member

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    You need to change these to: "up to 2009-10" - these are ever figures (within database). I'll delete this message if you fix your message.
     
  19. boomer

    boomer Senior Member

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    Thanks Julius.
     
  20. julius

    julius Watchoo lookin' at?

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    Still no response to my email. I guess that wasn't the person to contact.
     

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