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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. shrewsbury

    shrewsbury member

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    As I was wandering through and posting recent research, this synthesis of thoughts emerged. Not sure if this is the right section, if not, mods, please feel free to move.

    Thought I would share my hopes with you:

    (sorry - the formatting didn't transfer over. I'll do waht I can, but haven't got much energy left. It might be easier to view it here http://www.facebook.com/notes/xmrv-...ould-we-become-a-significant-pla/433892711796 )
    ----------------------------------------------------------------------------------

    The idea that Canada may be ready to join in XMRV ME/CFS research to a significant level is pure inference, speculation and hope on my part.



    I first noticed that one of the 3-part package that PNAS published with the FDA/NIH/Harvard paper included a commentary from French researchers and one Canadian, Andrew L Mason from the University of Alberta, and I experienced some patriotic hope that Canada would be entering the research story more fully. This hope is also selfish - I'm hoping for a study I can join that will hopefully fast-track my return to health.



    In the article, this group states that it is appropriate now to:

    1. determine the frequency of MLV infection in patients with CFS.

    2. determine the human to human transmission potential

    3. start antiretroviral trials

    4. determine if XMRV causes ME/CFS





    And then I noticed that for Dr Stein's new study, trying to determine if XMRV is the cause of ME/CFS, she will be joined by





    I looked into M Houghton, and found that he is an eminent scientist. He discovered the hepatitus C virus. http://www.cerc.gc.ca/chairholders-titulaires/houghton-eng.shtml And the Canada Excellence Research Chair position brings $10 million a year to his program. http://www.expressnews.ualberta.ca/...wardedfourCanadaExcellenceResearchChairs.aspx



    This partnership also intrigued me as I remembered lightly researching the Li Ka Shing Institute of Virology in the spring, when word of this study first came out, and hoping that it would engage in ME/CFS research. So I found the article below to refresh my memory.





    On looking a bit deeper though, A L Mason, of the PNAS article





    So it seems that the University of Alberta has 2 different incursions into XMRV research



    1. A L Mason through the Dept of Medicine and the above funders urging looking at trialling antiretrovirals, and finding causation, transmission and prevalence. I hope that this PNAS article indicates that they are ready to undertake some of these studies themselves.



    2. LTyrrell & M Houghton in the Li Ka Shing Institute of Virology at U of A, along with E Stein, seeing if XMRV is causal. And, given the people involved in this study, the words for a preliminary study next month in the news article, the funding that the Chair of Excellence & the Li Ka Shing Institute bring, and the intentions of the U of A and the LKS Institute to be world leaders in 'virus-based diseases' - it seems quite hopeful that further studies into XMRV will start soon out and that U of A may ride the crest of this emerging new disease research field.







    And then there is Paul Jolicouer, one of Canadas virologists, at the University of Montreal. I found information from 2001 that he was looking at MAIDS




    After that, all I can track is rumours; rumours that he did a study looking for XMRC in ME/CFS patients last winter that came up negative, and rumours that he was not discouraged and was proceeding with another study. However, when I found his faculty listing, there is no mention of this in his list of current studies.




    So I am hopeful that the rumours are true, and that with the global race to be the first in on XMRV & family research, P Jolicoeur will get funding to examine XMRV et al and ME/CFS.
     
  2. Rrrr

    Rrrr Senior Member

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    go canada!!
     
  3. awol

    awol *****

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    shrewsbury,

    Where are you located? Do you know about the Calgary/Edmonton study that is recruiting?
     
  4. Gemini

    Gemini Senior Member

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    shrewsbury,

    very informative summary. thanks for posting.

    wonder if Mason might be looking for ME/CFS patient
    volunteers for future XMRV research studies?

    Gemini
     
  5. shrewsbury

    shrewsbury member

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    Thanks awol, I know. I'm too far away. But if this all keeps up, I wonder how feasible moving would be.
     
  6. shannah

    shannah Senior Member

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    Are you east or west shrewsbury? I emailed Jolicoeur a few weeks ago and he said he'd try to fit us in his next study - didn't say when that would be though.
     
  7. Daffodil

    Daffodil Senior Member

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    i thought jolicoeur didnt find anything in his 1st study. is he doing another one?
     
  8. glenp

    glenp "and this too shall pass"

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    Vancouver Canada suburbs
    All Canadians, make sure you are joined up at http://www.mefmaction.net/ The link to sign on to volunteer for research purposes does not seem to be working. You can contact your local provincial director, not to be confused with other cfs/fm support groups. I contacted the webmaster and said that the link wasnt working, perhaps others contacting will also help? It is important that you put May 12 in the title when you email them. They get so much spam. They are sick like us, but volunteer and do the best they can, so now only open email that has May 12 in the title.

    glen

    Vancouverites hang on a bit, we got to be next!!

    I think Canadas might be good. Jollicoeur made NO big deal of his negative study, THAT IS DEFINITELY IN OUR FAVOR. He wants to find it.
     
  9. shrewsbury

    shrewsbury member

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    Gemini, thanks.

    Good question re: Mason. Maybe if one of us contacted him, asked, and reported back? I'm such an old worry-wart - I always worry about flooding some poor researcher with all our emails.
     
  10. shrewsbury

    shrewsbury member

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    What great news for you Shannah! Unfortunately (in this sense), I'm west.
     
  11. shrewsbury

    shrewsbury member

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    Great advice re contacting mefmaction.net glenp.

    While some things are slow with them, they still managed to be part of getting the Canadian Consensus Document funded, written, and published, with help from Helath Canada; funded Dr Stein and the Calgary 2006 conference with Klimas and S Stephens amongst others, and now are hosting the IACFSME conference next fall ......

    It would be great if west were next.

    I wonder if this is another slim possibility - St Paul's hospital in Vancouver is one of the world leaders in HIV/AIDS. If money shows up, they might be able transition that expertise into XMRV et al / ME/CFS


     
  12. shannah

    shannah Senior Member

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    RESEARCH STUDY, VOLUNTEERS NEEDED - INCLUDING THE SEVERELY ILL

    The only link I see Glen is about half way down the home page and the link takes you to the Alberta Study info. Is there another for other possible studies?
     
  13. pamb

    pamb Senior Member

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    Edmonton, AB, Canada
    Oh, heck. Bad planning. Such a tale of bad planning...

    My husband became ill in 2001 while we lived in Calgary, by 2003 he was being seen by several top nuerologists and neurosurgeons at the U of C, all of us wondering if the severe headache and orthostatic intolerance was CSF leak related. It was not and by summer 2004 - (when was the CCC written?) they had pretty much all given up. And of course every Dr. I asked said, no, couldn't be chronic fatigue - they mostly had it mixed up with fibro and needing to have certain pain points. nope, not the case. end of conversation.

    Before John became ill we had planned to move to France to enjoy riding our bicycles (it's what we did, both of us raced internationally at one time and for a cyclist France is nirvana - they actually like cyclists here) before we were too old, and I could work as well from here as Alberta. So, Sept 2004 we upped stakes, lock, stock and barrel and moved to France, figuring the health care system was good and either John would find out what was wrong or he'd be dead soon enough (you all know the feeling) and at least we would have had a bit of our dream before what appeared to be his imminent premature death.

    You can guess the rest. It's six years now, no help here of course, despite 6 hospitals and many more neurologists and finally the kiss of death, somataform. Now my home town, Edmonton, is a hotbed for CFS research. Go figure. And no way we can afford to move back as the real estate did not really crash there as it has elsewhere and has about doubled in price since we left in 2004. Ah, well. God willing we can get treatment in France in another year or so. At least a few of the hotshots are from a French University, but working in Edmonton, where the oil money still is.

    hmmmm. I may keep pondering this one. If we took about a week, with lots of small legs to the journey and a day of rest between each, I could get him there. Like a 10 yr CFS patient has the money left for a trip like that. Oh, well. C'est la vie. I do love living in France. The French people are lovely and they like Canadians.

    Thank you again to WPI for blowing this whole thing open so we can even dream of next year being different :)
     
  14. glenp

    glenp "and this too shall pass"

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    Vancouver Canada suburbs
    Kati kindly started a BC group here. I always have trouble finding it lol!!! Make sure you join up if you are in BC. I think it would be a good idea if others in other provinces put their own groups on here too, that way when you hear of specific studies or happenings in your area you can let each other know without having to post on the board and researchers getting swamped

    If you go to the National ME/FM Action network in Canada, I can?t seem to find the link now, where you could click to sign up for research. The link wasn't working, i did email and phone them. All I see there now is the sign up for research in Alberta. Perhaps they will post other resarches there as they come up. I have previously signed up there for research.

    Its sad, I have heard there are many trying to get into the one in Alberta, so many left behind?

    glen
     
  15. shrewsbury

    shrewsbury member

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    Yes glen, but they plan to use the data from this preliminary study to apply for a larger grant by Sept 15 2010! so hopefully many will be included then.

    Shannah found it on the mefmaction.net site

     
  16. glenp

    glenp "and this too shall pass"

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    Ok I see. So they do something kind of quick first? Makes moire sense

    I wondered why I saw it posted here a couple months back, then nothing and now again. So I wonder if they did a few back when it was posted?
    Sorry my cognition is not good

    glen
     
  17. boomer

    boomer Senior Member

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    Here is a letter I received in January this year from the Minister of Health who says in the third paragraph the Canadian government would welcome applications for funding for research for xmrv and cfs. (Please note that this is not my real name on the letter.)

    [​IMG]
    [​IMG]
     
  18. sensing progress

    sensing progress Senior Member

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    Tucson, AZ
    Shrewsbury,

    Dr. Alter, co-author of the recent PNAS study, was also involved in the discovery of the Hep C virus. Perhaps they know each other and Dr. Alter has gotten Houghton interested in the XMRV/MLV and CFS connection?

    Anyway, thanks for sharing all this. It does look very promising with top-notch researchers.
     
  19. shrewsbury

    shrewsbury member

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    hi sp -

    here's what I found in a brief bio

    Alter is NIH - not sure if he was ever at CDC, but it is a small world & one would think that they know of if not know one another.

    Boomer - great letter! Hope all likely applicants know that "the Canadian government would welcome applications for funding for research for xmrv and cfs."

    Glen - your cognition is working on this topic. I don't understand either. News of the study was leaked in the spring I think, and we swamped them with applications. The info about the study had to be withdrawn everywhere. And we haven't heard anything til now.

    I guess they weren't ready to go at that point. They sure are trying to cram a lot into a short time-frame now. I wish them great success. We need research here. Now.
     
  20. Chris

    Chris Senior Member

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    Hi--there are signs of life, but I would not put much faith in that letter from the Minister, I'm afraid, though attitudes may be changing. Alberta has become a hot spot, though--Eleanor Stein in Calgary, and a whole bunch in Edmonton. Nancy Klimas's presentation in the IiME this year gives a lot of credit to a "genius" (her word) there, and this latest research project shows the two are cooperating. There may be something brewing at the University of British Columbia, Glen reports, and Jolicoeur is doing another study at the U de Montreal. But I don't think I want to move to Edmonton from Victoria, and currently plan to get the serology test from VIX, and if positive wait for more news from Klimas and others on paths to follow, and then try to persuade an Infectious Diseases doc to prescribe. But maybe that larger Alberta study will ask for blood from outside that province, and that would be great! Let's hope...

    Like others I could not get through that "register" button on the website--the whole site seems pretty dead to me. Best, Chris
     

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