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New Alberta XMRV Study

Discussion in 'Active Clinical Studies' started by shannah, Aug 26, 2010.

  1. shannah

    shannah Senior Member

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    News Calgary & Alberta
    Researchers hope to prove viral cause of fatigue
    By JENNA McMURRAY, Calgary Sun

    Last Updated: August 26, 2010 5:24pm
    Email StoryPrintSize A A AReport TypoShare with:
    FacebookDiggDel.icio.usGoogleStumble UponNewsvineRedditTechnoratiFeed MeYahooSimpySquidooSpurlBlogmarksNetvouzScuttleSitejot+ What are these? .Alberta researchers hoping to prove once and for all a debilitating syndrome is viral in origin are launching an ambitious study in Calgary and Edmonton.

    Outbreaks of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) have been documented since 1930, but have no known cause or accepted diagnostic tests.

    Recent research has argued both for and against the theory that ME/CFS, which causes exhaustion, sleep disorders, cognitive problems, and muscle and joint pain, is linked to a retrovirus called XMRV, a relative of HIV.

    Dr. Eleanor Stein, a Calgary ME/CFS specialist and researcher, said a study launching in Calgary will look to confirm if the syndrome is in fact linked with the retrovirus, which is tricky to find and treat.

    The retrovirus actually fits itself into our own DNA so that when our DNA replicates, the retrovirus replicates with it, she said.

    There is no known treatment for ME/CFS and it is estimated more than 300,000 Canadians may be affected.

    Stein will be joined by Dr. Lorne Tyrrell, founding director of the Li Ka Shing Institute of Virology in Edmonton, and Dr. Michael Houghton of the University of Alberta, who holds the Canada Excellence Research Chair in Virology, for a preliminary study next month.

    Approximately 100 participants 50 diagnosed with ME/CFS and 50 healthy are needed between Calgary and Edmonton.

    The subjects will answer questionnaires and have blood drawn ideally by the end of September, said Stein, so the research team has enough time to gather data and apply for grants early next year to fund a larger study.

    Patients severely affected by ME/CFS are invited to join the study as well, as the team can draw blood at their residences.

    Interested Calgarians are asked to call 403-287-9941 and Edmontonians 780-492-8415.

    jenna.mcmurray@sunmedia.ca


    http://www.calgarysun.com/news/alberta/2010/08/26/15154261.html
     
  2. Anika

    Anika Senior Member

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    Quoted from Shannah's post:
    [Stein will be joined by Dr. Lorne Tyrrell, founding director of the Li Ka Shing Institute of Virology in Edmonton, and Dr. Michael Houghton of the University of Alberta, who holds the Canada Excellence Research Chair in Virology, for a preliminary study next month.

    Approximately 100 participants 50 diagnosed with ME/CFS and 50 healthy are needed between Calgary and Edmonton.

    The subjects will answer questionnaires and have blood drawn ideally by the end of September, said Stein, so the research team has enough time to gather data and apply for grants early next year to fund a larger study.

    Patients severely affected by ME/CFS are invited to join the study as well, as the team can draw blood at their residences.
    [/I]

    Thanks, this is very good news, Shannah.

    I thought I recognized Michael Houghton's name, and in fact he is a new member on the U.S. CFS Advisory Committe (or CFSAC). His expertise in virology should be invaluable!

    It is also good to see that they are providing for getting blood samples from housebound patients. That is almost never done, so an important group of patients isn't included in most studies.
     
  3. glenp

    glenp "and this too shall pass"

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    Vancouver Canada suburbs
    Good to see

    Thank-you for posting this. Its good to see that the homebound are also included.

    glen
     
  4. sensing progress

    sensing progress Senior Member

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    Excellent. Thank you for sharing this. This has been a good week of news.
     
  5. shannah

    shannah Senior Member

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    If there's anyone from Alberta here at PR, hopefully they can get into this study and keep us informed as to what's going on. There has been such little activity on XMRV in Canada so I'm thrilled to see this.

    Seems to me Ellie Stein was involved in something to do with XMRV just a few months ago but I can't remember any of the details now. It's encouraging that she's already planning ahead for a larger study next. I know she's giving a talk in Toronto on September 15th at the Environmental Health Clinic so maybe she'll share more of her plans then.

    Good eye Anika connecting Michael Houghton as a new member of CFSAC.

    Seeing Canada's increasing participation, I'm beginning to feel a little more optimistic that we Canadians won't be left behind.
     
  6. shannah

    shannah Senior Member

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    Here's a little more information from

    http://www.mefmaction.net/MECFSFM/News/VolunteerforResearch/tabid/933/Default.aspx


    Research Studies

    The following request has been received from Dr. E. Stein on behalf of the University of Alberta

    New Research Study – Volunteers needed including the severely ill

    The University of Alberta recently received a generous endowment to establish the Dr. Li Ka Shing Institute of Virology. Dr. Lorne Tyrrell, a virologist with a long time interest in ME/CFS and former Dean of Medicine at U of Alberta is the Director of the new institute. Dr. Michael Houghton a co-discoverer of the Hepatitis C virus has been recruited to lead new research. Despite the recent controversy over the XMRV virus, Drs. Tyrrell and Houghton want to look for the XMRV virus in Alberta patients with ME/CFS. Dr. Houghton has been in touch with Dr. Mikovits at the Whittemore Peterson Institute and other experts in the field to ensure that the methodology of the study will be adequate to detect the virus if present.
    We have an ambitious time line. The study will go before the U of Alberta ethics committee on July 23. If approved we want to have blood samples collected and analyzed by August 30th so that we are in a position to use whatever information we find to apply for a bigger grant to do more detailed research. The grant application deadline is September 15th, 2010.

    Our protocol includes an assistant who will go to the participant's home or work (or some other location if preferred) to draw the blood. We hope this will allow the severely ill to participate as the blood can be drawn from the bedside if necessary.

    We are looking for 50 subjects with ME/CFS (meeting Canadian Consensus Criteria) and 50 healthy people matched by age and gender.

    To Participate: If you live in the Edmonton area please contact the ME Society of Edmonton to Diane Ching mailto:diane3746@gmail.com

    If you live in the Calgary area contact my office at: mailto:espc@shaw.ca or 403 287-9941

    As soon as we have ethics approval we will contact each person to explain the study and send the inevitable study questionnaires and consent forms to have completed prior to the blood draw. As always participation in research is entirely optional and will not impact your clinical care in any way.
     
  7. shrewsbury

    shrewsbury member

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    Nice digging Shannah. How fantastic to have confirmed that they have contacted WPI about methodology.
     
  8. glenp

    glenp "and this too shall pass"

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    Vancouver Canada suburbs
    YES I think the studies coming for us Canadians just may be the ones trying to find "stuff" not hide it. Wern't the negative studies done rather quickly?? YES its a good sign I bet that they will be selective in their selection of cohurts too

    glen
     
  9. shannah

    shannah Senior Member

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    Another nice feature of this study is that they want at least the preliminary results FAST. I'm beginning to love that word.

    Hopefully they'll release these preliminary findings just as quickly.
     
  10. shrewsbury

    shrewsbury member

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    I know!

    I think maybe even more than knwoing that they've talked with WPI, I love this paragraph, especially the underlined:

    They want to use the data to apply for a bigger grant by Sept 15 2010.
     
  11. boomer

    boomer Senior Member

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    Please see this letter from the Minister of Health which i received in January this year. In the third paragraph she says they would welcome funding applications for research on xmrv and cfs. They had not received applications at that time. (Please note that this is not my real name.)

    [​IMG]
    [​IMG]
     
  12. Julia Rachel

    Julia Rachel

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    I am curious about the scientific journal article published by Dr. Jose Montoya showing a correlation between high EBV and High HHV-6a titers at 3X greater positivity or more being linked to the subset of CFS known as CFIDS?VICD. And, the positive results being reported via this study by using anti-virals to treat these two viruses as well as the CMV which sometimes co-infects. Also, the known piggyback infections such as Micoplasma and Chlamydia P which are commonly treated with Antibiotics successfully in co-ordination with anti-viral treatment. There is help available right now for those that have CFS with viral reactivation. These must be treated before or posiibly during retro-viral treatment. HHV-6A fuels the consistent reactivation of EBV...it is a chain reaction. Causation may not be known (only theorized) for CFS/CFIDs now OR if ever, just like the leukemia T-cell Retrovirus (HTLV-1), which we are uncertain of true causation. Now we are finding strains of HTLV-1, 11 and 111, just as we are finding that there may be up to 5+ strains of XMRV. Diagnosis and Treatment for XMRV is years away, although trial studies might start earlier. It is fantastic that this study mentioned is hopeful, but can we not treat sick patients right now with information we have at hand? This is my concern....some patients do not have 1-3 years to wait for the "Big Guns" to appear plus patients will need to be treated for the viruses and co-infections in addittion to any retro-virus present if testing positive. I am worried that left unchecked, more damage will be done on a cellular, financial, physical and emotional scale to all those patients who are suffering greatly right now and have been suffering. Especially our children. The sooner treatment begins, the more likely the efficacy will be of a timely manner. Blessings.Julia http://vlgonvalcyte.wordpress.com/
     
  13. susileela

    susileela

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    The current Segway legislation is widely undefined in Alberta and the Minister of Transportation for Alberta is taking a very proactive approach by examining this new green transportation in a controlled environment through police, EMS, municipalities greening initiatives and other innovative ideas on how to use this new green technology including a Segway tour in Edmonton's River Valley.

    Segway friendly legislation is defined already throughout most of the US, Europe and around the world as Electric Personal Assistive Mobility Device” (EPAMD) means a self-balancing, two non tandem wheeled device designed to transport only one person with an electric propulsion system that limits the maximum speed of the device to 12.5 miles per hour or less. A pedestrian vehicle designed to be used in pedestrians environments such as sidewalks, side roads, pathways, etc.
    For more information on four independent safety studies regarding Segway PT safe usage, including one done for Transport Canada, view the following link.
    http://www.segway.com/support/safety-studies.php
     
  14. Cort

    Cort Phoenix Rising Founder

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    Raleigh, NC
    I meet Eleanor Stein at the Reno Conference; she has a personal interest in ME/CFS - she has it! She's very active in research - she produced a small repeat exercise study that unfortunately failed. I'm we are in good hands with her.
     
  15. chitra

    chitra

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    You could try the college; depending on what your native tongue is, you may be able to team up with an English major who wants to learn your first language. Trade off language lessons.
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