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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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    [Population of Canada according to Wikipedia: Population - 2010 estimate 33,975,000 - 2006 census 31,241,030]


    http://www.mecfscentre.org/mythbusting/question-6f

    From MacDonald, L. (2008, Spring 2008). The Science of CFS: CFS Myth-busting Quiz 2008. Quest: National ME/FM Action Network Newsletter, 77.
     
    Snow Leopard likes this.
  2. Hope123

    Hope123 Senior Member

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    I'm not that familiar with the CFS/ME situation in Canada but people should consider joining the following group:

    http://fm-cfs.ca/home.html
     
  3. Kati

    Kati Patient in training

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    I can't help myself and comment on this. There is nothing going on in Canada. The rheumy I waited 6 months to see because of her high profile told me she didn't treat CFS in the first 5 minutes of interview.

    Of what I know, in Canada we have Dr Hyde (in Ottawa) who has been doing research in ME for the last 25-30 years.
    And there is Dr Ellie Stein who was mentioned by Dr Mikovits yesterday, she is a psychiatrist specializing in ME/CFS (Calgary) - she is definitly not on the Reeves/Wessley camp- but on the side of the patients that have been suffering this illness for decades.
    Dr Jolicoeur (Montreal) is at the helm of a XMRV replication study. Results are pending.
    Dr Allison Bestead (sp) is a hematologist in Toronto area treating fibro/CFS patients but I don't know any more than that.

    It's pretty thin for a big country, and thousands of patients that are struggling to be recognized as very sick patients.
     
  4. Dolphin

    Dolphin Senior Member

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    I wish he would publish more. Search PubMed and you find very few results. It is more useful for many of us when doctors/researchers have findings or give observations in published articles.
     
  5. Koan

    Koan Be the change.

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    We're not really a big country. We are a very small country - 1/2 the size of the UK and 1/10 the size of the US. Australia is smaller, of course, but Canada is somewhere around 35 in the list of countries by population.
     
  6. Dolphin

    Dolphin Senior Member

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    A problem we have is that CFS (or ME) has only started to be diagnosed in many/most non-English speaking countries. I'd say Canada would be in the top 10 (say) in terms of the numbers of patients diagnosed with ME or CFS. And of course a lot of the countries in the world are in the "developing world".

    ETA: When I replied, I had only seen Koan's reply which I thought might be directed at me. I hadn't seen Kati write: "It's pretty thin for a big country"
     
  7. boomer

    boomer Senior Member

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    If we had one complaint email or letter to Canadian politicians for every 100 complaints on this web site we might have more luck in raising funding for research. Dr. Paul Jolicoeur is supposed to be seeking a grant to do research on xmrv. I don't know if he got it or not. If he hasn't been able to raise funds perhaps that is one place to start in writing to our politicians. I am not sure who should be approached and how.
     
  8. Kati

    Kati Patient in training

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    I agree- and also perhaps approach the decision makers.
    He has written a textbook and couple of books that I have yet to read.
    His research is more focused on vaccination (hep B) and Me as far as I know. He also helps patients with disability issues. It sounds like he has lots of knowledge.
     
  9. Kati

    Kati Patient in training

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    Boomer, I am not sure if you are in Canada, if yes which province. I agree that we should start writing. Our health care is provincially regulated. I have tried to e-mail them and they sent me back to my doctor to send me to the appropriate specialist. This is a head banging experience. My doctor doesn't know anything, there are no specialists, she has no real interest to push it since she doesn't get paid for the work she does outside me visiting her office.

    I was thinking of forming an advocacy/action group for British Columbia. I totally agree it is time to pass into action, and get some interest and funds for ME/XMRV research. We have great HIV specialists in Vancouver area. I bet one or 2 would be interested to investigate a new retrovirus?
     
  10. Kati

    Kati Patient in training

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    When I mentioned Canada is a big country, I meant that it's 5000 km wide. Ontario is the most populated, Quebec seems to do their own things on many levels and British Columbia and Alberta are far away from the rest. It is actually cheaper for me to fly to San Francisco from Vancouver than Toronto/ Ottawa/ Montreal.
    Oh and I haven't mentioned the folks in the Maritimes and nunavut, our newest territory that is much likely in the dark most of the day at this time of year.
     
  11. starryeyes

    starryeyes Senior Member

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    Bay Area, California
    Excellent Sig Kati!
     
  12. Kati

    Kati Patient in training

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    Thank you Teekjay- looking forward to XMRV resuts and if it is positive, am going to war with it.
    If negative... I'll wait for the next round of testing. I must have something, really- :confused: My health has been declining for a good year now and wondering when will I bottom? And is there any doctor that will be willing to look into it?

    for the longtimers, I have lots of respect for you all- don't know how you could have done it year after year with minimal support, if at all.

    So my motto is almost like
    "Going to war before I can no longer take care of myslef" BUT... I am no terrorist
     
  13. Dolphin

    Dolphin Senior Member

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    I'm not sure if he has published on hep B and vaccinations? Can't see anything on PubMed.
    What are the books he has written? I have "the Clinical and Scientific Basis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome" (1992) which is a collection of manuscripts connected with a conference in Cambridge in 1990. It's interesting but I would have liked a researcher to publish more since then.
     
  14. Kati

    Kati Patient in training

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  15. Dolphin

    Dolphin Senior Member

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    Thanks Kati.
     
  16. Koan

    Koan Be the change.

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    Teejkay just posted a thread: Have You Got It In You?

    This is a petition campaign where one signs on to a letter asking government to test for XMRV because of the threat to the blood supply. I think this is just the sort of thing which can and should be done here in Canada.

    Check it out.
     
  17. Dolphin

    Dolphin Senior Member

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    They have a patient registry which should help researchers: http://fm-cfs.ca/survey.html I don't know much about it but it would seem a good idea for patients to fill it in.
     
  18. Kati

    Kati Patient in training

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    One thing I wonder, and maybe some people can enlight me- they say there are thousands of people afflicted with CFS- where are they? we heard 4-10 millions in the US, I don't have numbers in Canada, I wonder if this has been reported via statistics or self reported, or is the info coming from doctors offices. If the info is coming from doctor's offices, what definition have they used? Ha! This is a trick question because very few know about the canadian consensus of Fuduka definition. Hack, Dr Hyde takes an average of 18 months to properly diagnose someone with ME (and yes I suspect that these is much less ME patients than CFS if you make the difference.

    I tired to look up statistics Canada for a number of cases, but to no avail. It would be interesting to have a number so we could educate our canadian stakeholders. (and doctors)
     
  19. Lily

    Lily *Believe*

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    Does this help? http://fm-cfs.ca/cfs.html

    Does look like old information though, doesn't it......
     
  20. Kati

    Kati Patient in training

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    Tom I have tried this link on several occasions and it doesn't work.
     

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