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Thread: Controversial report indicates little evidence to support long-term benefits of DMT

  1. #1
    Distinguished Community Member agate's Avatar
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    Default Controversial report indicates little evidence to support long-term benefits of DMT

    There seems to be some controversy about a recent report coming from the US Agency for Healthcare Research and Quality (AHRQ). The article includes a comment indicating "that meager information exists to guide patients and their physicians in making decisions about discontinuing DMTs. The authors stated that there's little evidence suggesting long-term harms are any greater than short-term harms for patients taking DMTs. Similarly, they stated that there's little evidence supporting long-term benefits from DMTs for patients with relapsing-remitting MS (RRMS)."

    Included in the article is this statement by Dr. Rosalind Kalb of the National MS Society:

    It's not that anyone is saying anything bad, but I think it's very easy for people to make the wrong assumption that the absence of positive data is the same as negative data, which is what's happening in this paper. We shouldn't confuse those two things," said Rosalind Kalb, PhD, vice president of clinical care at the National MS Society, in an interview....

    ...
    "It's just too easy for the paper to be misused or misconstrued as evidence that continuing treatment isn't helpful," Kalb continued. "We just don't know yet. We should be just saying we don't know this. They say it, it's embedded in the paper, but the structure of the paper and the title of the paper don't go along with that conclusion."


    The MedPage Today article (November 17) includes a link to the actual report and can be seen here.

    Last edited by agate; 12-05-2014 at 12:36 PM.
    MS, diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009.

    "Always put off until tomorrow whatever you think you should do today." --Anonymous



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    Distinguished Community Member SuzE-Q's Avatar
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    Thanks for posting this, Agate! Very timely for me.

    I understand why there might have been controversy, the questions they were seeking to answer seem peculiar.

    I think we all are quite aware that an absence of evidence is not evidence of the opposite, not sure why he emphasizes that, I especially think most doctors and researchers would know this already. I suspect many of our doctors are of the opinion that it's better to have us on something than nothing so long as the risks aren't high, absent evidence to the contrary. They'd rather have something to offer us than nothing when there is a possibility it may help. Perhaps big pharma takes advantage of this vacuum by not filling it with concrete evidence of the status of those who stop the meds?

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    Distinguished Community Member Howie's Avatar
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    I've had MS since 1998. I've never taken any DMT. I've had two exacerbations, both in the first year since DX. Yet today, I'm more disabled than I was after recovering from that second exacerbation. So the MS is slowly doing damage very quietly. No exacerbations, but silent progression. Don't stop your DMT just because of this silly report.
    "Given the millions of billions of Earth-like planets, life elsewhere in the Universe without a doubt, does exist."

    Albert Einstein

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    Distinguished Community Member SalpalSally's Avatar
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    What Howie said!!!!
    Love, Sally


    "The best way out is always through". Robert Frost







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    Distinguished Community Member Lazarus's Avatar
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    Quote Originally Posted by Howie View Post
    This quote is hidden because you are ignoring this member. Show Quote
    I've had MS since 1998. I've never taken any DMT. I've had two exacerbations, both in the first year since DX. Yet today, I'm more disabled than I was after recovering from that second exacerbation. So the MS is slowly doing damage very quietly. No exacerbations, but silent progression. Don't stop your DMT just because of this silly report.
    Howie,
    My disease course is like yours. Maybe one or two attacks ( one which led to doctors and diagnosis) but then periods of good and periods of bad but no clear attacks. Just slow and very steady progression. Progressive relapsing.
    Last edited by Lazarus; 12-05-2014 at 02:59 PM.
    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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    Distinguished Community Member renee's Avatar
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    My progression is so slow, I don't have a firmly pronounced disease path.
    I am consequently treated as an RR.
    My 18th year MS anniversary was this week.

    Light flares are largely due to stress.
    Personal relationships are a big factor.

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  13. #7
    Distinguished Community Member Exacerbator's Avatar
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    Quote Originally Posted by Howie View Post
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    ...I've never taken any DMT...Don't stop your DMT...
    Quote Originally Posted by SalpalSally View Post
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    What Howie said!!!!

    People seem to forget or be unaware of the fact in the first place that MS is really nothing but a "disease model"...



    ...At least in rats (AKA "most cases")




    Those of you pushing your so-called "DMTs" should probably offer more proof to go along with your cheerleading on the topic.

    Otherwise, you should probably keep your opinions to yourselves.

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    Distinguished Community Member renee's Avatar
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    And I am a Victorias secret model w/meat on her bones.

    If I could dump some of my disease associated drugs and medical supplies
    I would love to ditch medicaid NY.
    The circus jumps, hassles, paperwork, confrontations from a single faulty Medicaid
    computer entry are a lot of work.
    Oh, to not have that dependence on the state.
    The less i need the easier it would be.

    I always traveled light and this agitates me tremendously.
    The money the gov would save if they kept it simple and stopped throwing it into black holes
    of waste, bureaucracy, catering to pharma companies.

    Traveling light with a backpack, credit card and a little money.
    Wheelchair use has been an enormous shock in some ways eighteen years into it.

    I keep looking at mini houses to put on a piece of land near a lake.
    Thoreau, here I come!
    Last edited by renee; 12-10-2014 at 06:22 AM. Reason: because I am contradictory!

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    Distinguished Community Member SalpalSally's Avatar
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    Quote Originally Posted by Exacerbator View Post
    This quote is hidden because you are ignoring this member. Show Quote
    People seem to forget or be unaware of the fact in the first place that MS is really nothing but a "disease model"......At least in rats (AKA "most cases")

    Those of you pushing your so-called "DMTs" should probably offer more proof to go along with your cheerleading on the topic.

    Otherwise, you should probably keep your opinions to yourselves.
    Believe me, no one here is pushing DMTs...UGH!!!! However if you are on one
    and it seems to be working for you, then don't stop it because of this article.
    "If it ain't broke, don't fix it, stupid."
    Love, Sally


    "The best way out is always through". Robert Frost







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  18. #10
    Distinguished Community Member Howie's Avatar
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    Cool

    Sally, I've never had anyone on my "ignore" list...until now. Use it.
    "Given the millions of billions of Earth-like planets, life elsewhere in the Universe without a doubt, does exist."

    Albert Einstein

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