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Thread: ACTRIMS keynote address on Ocrevus (ocrelizumab), the first B-cell therapy

  1. #11
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    I give a sub-q shot 3 times a week. Every other week, Peter gives them in sites that I can't see. It works for me. I am a Copaxone "responder."

    It is not tied to any particular feelings. Now that I take time to think about it, my thoughts are of gratitude that it exists and that I have access to it.

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  3. #12
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    Quote Originally Posted by Howie View Post
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    Don't you think the meds MSers take are a constant reminder that we are sick.
    Not so for me because the meds I take help me to keep farming. So I am thinking about that
    Linda~~~~

    Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"

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  5. #13
    Distinguished Community Member SuzE-Q's Avatar
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    Having limitations due to MS is a constant reminder to me that I have MS.
    Last edited by SuzE-Q; 03-08-2017 at 06:53 PM.

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  7. #14
    Distinguished Community Member SuzE-Q's Avatar
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    Wonder why THIS wasn't presented at ACTRIMS?

    http://globalnews.ca/news/3295904/co...anadian-study/

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  9. #15
    Distinguished Community Member agate's Avatar
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    I don't know if you've been following the CCSVI news but CCSVI has been shown to be ineffective in study after study.

    This is summarized in this transcript of a panel discussion from the MS International Federation:

    https://www.msif.org/research/progre...ar-transcript/
    I have tried to know absolutely nothing about a great many things, and I have succeeded fairly well.
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    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07-5/15/10. Member of MS forum here since 2001.

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  11. #16
    Distinguished Community Member SuzE-Q's Avatar
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    This study (that I linked to) was touted for so long as bringing a definitive answer to the question of whether CCSVI is related to MS.

    I didn't even hear about the results, a friend sent me a French newspaper report that I had to translate to read what it said. I had to Google to find an English link to the story to bring it here.

    This certainly didn't make the news media as a definitive answer, which it should, given the initial hype and how it continues, to some degree. I think this ws the first large double blinded study completed, with follow up assessment. I would have thought it would have been more newsworthy. I'd have thought it would have been presented at an MS conference too.

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  13. #17
    Distinguished Community Member agate's Avatar
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    The paper was presented at another conference:

    The findings from the $5.4-million study, jointly funded by the Canadian Institutes of Health Research, the MS Society of Canada, and the provinces of British Columbia, Manitoba and Quebec, were presented today at the Society for Interventional Radiology’s annual scientific meeting in Washington, D.C. The researchers are now preparing an article to be published in a peer-reviewed journal.
    It's possible that a paper based on this study will be presented at the upcoming AAN conference in April. I believe that the AAN conference is more important than ACTRIMS in terms of reaching a wider audience.
    I have tried to know absolutely nothing about a great many things, and I have succeeded fairly well.
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    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07-5/15/10. Member of MS forum here since 2001.

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  15. #18
    Distinguished Community Member SuzE-Q's Avatar
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    Quote Originally Posted by agate View Post
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    The paper was presented at another conference:



    It's possible that a paper based on this study will be presented at the upcoming AAN conference in April. I believe that the AAN conference is more important than ACTRIMS in terms of reaching a wider audience.
    Your article refers to the same presentation that my newspaper article referred to:

    "Traboulsee’s team presented their findings Wednesday at the Society for Interventional Radiology’s annual meeting in Washington. They say their next steps are to publish their findings."

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  17. #19
    Distinguished Community Member agate's Avatar
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    Quote Originally Posted by SuzE-Q View Post
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    Your article refers to the same presentation that my newspaper article referred to:

    "Traboulsee’s team presented their findings Wednesday at the Society for Interventional Radiology’s annual meeting in Washington. They say their next steps are to publish their findings."
    That was my point but I guess I didn't make it clear. If it was just presented at one conference, the chances are that it wouldn't turn up at another conference. There are probably efforts at avoiding duplication--?

    Also, since it's not "breaking news," maybe the ACTRIMS people opted not to include it. The article in your link includes a link to this 2013 study, for instance:

    http://globalnews.ca/news/891996/res...nis-ms-theory/

    The CCSVI procedure was shown to be ineffective, sometimes even harmful, a couple of years ago in spite of the enthusiasm about it.

    FYI, there's a PubMed abstract for the article you're referring to (March 9, 2017) that might be of interest:

    https://www.ncbi.nlm.nih.gov/pubmed/28270250
    Last edited by agate; 03-09-2017 at 09:00 AM.
    I have tried to know absolutely nothing about a great many things, and I have succeeded fairly well.
    --Robert Benchley

    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07-5/15/10. Member of MS forum here since 2001.

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  19. #20
    Distinguished Community Member SuzE-Q's Avatar
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    Quote Originally Posted by agate View Post
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    That was my point but I guess I didn't make it clear. If it was just presented at one conference, the chances are that it wouldn't turn up at another conference. There are probably efforts at avoiding duplication--?

    Also, since it's not "breaking news," maybe the ACTRIMS people opted not to include it. The article in your link includes a link to this 2013 study, for instance:

    http://globalnews.ca/news/891996/res...nis-ms-theory/

    The CCSVI procedure was shown to be ineffective, sometimes even harmful, a couple of years ago in spite of the enthusiasm about it.

    FYI, there's a PubMed abstract for the article you're referring to (March 9, 2017) that might be of interest:

    https://www.ncbi.nlm.nih.gov/pubmed/28270250
    My point was that it was presented at an interventional radiologist conference and not MS one.

    The earlier study just referred to whether blood flow was impaired (it was found not to be), it wasn't an actual blinded study of the procedure.

    I'll be interested in how all those who promoted and supported this are taking the news. A "flawed" study? I seem to recall they didn't think the veins were being scanned properly when the earlier results found no difference in our veins to nonMSers.

    It's very sad considering some MSers died as a result of the procedure, others spent tens of thousands of dollars.

    ETA -- no, that registry, the last link, was not from this study, but a separate patient reported outcomes database set up for those who had had the treatment done elsewhere, outside of Canada.
    Last edited by SuzE-Q; 03-09-2017 at 02:59 PM.

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