Research: Will CCSVIers modify their views in face of negative information?

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Well we have been talking about abstracts at the AAN this week, here’s another contentious one to wet the appetite, before the weekend onslaught.

Warning this has not been properly Peer-Reviewed 
its only an abstract not a paper


OBJECTIVE:
To assess opinions concerning CCSVI in a Canadian cohort of MS patients
and to determine whether a physician-designed educational tool would
change patient opinions.  
BACKGROUND: Chronic Cerebrospinal Venous
Insufficiency (CCSVI) is the theory that extracranial venous occlusions
may give rise to multiple sclerosis (MS). A treatment involving venous
angioplasty has been developed based on this theory. Access to this
treatment, which remains controversial, has been widely demanded by MS
patients in Canada.  
DESIGN/METHODS: A literature search was
conducted in September 2010. The results were incorporated into a
narrated slideshow video describing CCSVI and research performed to
date. 74 patients were randomized to watch either the physician-designed
video or a recent Canadian television documentary video on the topic.
All subjects were required to fill out the same questionnaire concerning
their opinions about CCSVI before and after observing the videos. The
primary outcome was defined as desire for CCSVI surgery. 
RESULTS:
Overall 74 patients participated, mean age 44, median EDSS 3.5, with 36
randomized to the physician-designed video group and 38 to the
documentary video group. Seventy per cent desired CCSVI surgery before
watching the videos compared to 65% after. There was no significant
difference between the groups, either before or after viewing the video
(p=1.0 for “before” and “after”). Higher EDSS scores were associated
with desire for surgery (r=0.6, p<0.05).  
CONCLUSIONS: A
significant majority of MS patients in Canada desire CCSVI surgery. A
review of the scientific evidence did not dissuade patients from their
desire for surgery, despite the fact that good evidence for its
efficacy does not exist. Desire for CCSVI surgery is correlated with
greater disability, presumably because of the lack of effective
conventional agents for more advanced disease.

I think the take home message suggests that people who are convinced of the validity of benefit
of CCSVI are unwavering in their passion for the treatment, even when there is no good evidence to support the view. Based on comments we get, I think that we do not need data to believe that this is the case. These are sometimes
balanced and thought-provoking sometimes threatening (I wish you would stop this please!….it does your case no
good) and sometimes just plain IG11.
Science
is about modifying your views as knowledge grows. Depending on the outcomes of the trials I am sure
there will be more clarity. If it does not work…shame and I am fine with this
and if it works great and I am fine with this also (Either way at present the outcome would not influence my research). 

I wonder if there is
benefit from venoplasty, does this mean that CCSVI is the dogs bo***cks or
whether there could be an alternative explanation………..I think maybe. Let’s
see.

Over the weekend we will post the monthly round up of CCSVI so you can see if the recent research is suggesting that there is real (mystery) meat to the story or not. 

 

  
As promised(John & Andy in Manchester) the Happy or Sad Zamboni are no more :-).

About the author

MouseDoctor

8 comments

  • I'm sorry to say but I don't think it matters what the scientific research into CCSVI says- there is a large unmet need for treatment for progressive MS out there, and until there are effective treatments desperate people will seek what's available via anecdotal evidence, be it CCSVI or stem cell treatments. All genuine pleas by you that there are treatments in the pipeline and the other stuff doesn't work, are seen as at best 'not good enough' or at worst as some giant conspiracy between you and the big pharmas.

  • The parallell between the CCSVI lobby and the MMR vaccine as the cause of autism brigade is striking and no amount of hard evidence is ever going to persuade them to change their views.
    We met a number of MSers at MS Life who have paid for the CCSVI procedure
    and for whom it had absolutely no effect other than to lighten the weight of their wallets.
    I know desperation breeds desperate measures but please believe us that new treatments for progressive MS really are on their way soon.

  • if you ask pharma if they could have drugs to treat progressive ms they would chomp on the bit to get them because then they could make money out of progressive ms. No conspiracy

  • However they (pharma) do get a thumbs down from me, when they have sometimes been less than helpful in our attempts to get compounds that are out of the patent life or near the end of their patent lifes to try them in progressive MSers. Here we have to get government and MS Societies etc funding which is a much much slower way of doing things

  • Videos made by physicians can't match the before and after CCSVI videos on youtube.

    As anonymous earlier said, till there are effective treatments people WILL try other things.

    That CCSVI does not help everybody makes no difference. Even the DMTs have their share of non-responders.

  • Good post

    Fair point about the videos but this is not unheard of..Miraculous treatments such as Goat serum etc.

    As long as people know that it has the potential to be an expensive placeo…buyer beware.

    Maybe some twists in the trials yet to be had.

  • I have no intention of having CCSVI treatment but a friend has and it has completely removed her fatigue. Her view is that she doesn't believe it's the cause of MS but something separate which has been useful in reducing her symptoms. She previously had to be lying down 4+ hours a day and described the fatigue as 'paralysing'. Now, a year on she has none apart from normal tiredness and stays up all day. Can you explain the opposition to this view of CCSVI?

  • Great I am glad your friend is feeling better.. Let us hope then that the ongoing trials of venoplasty show it is real and not a placebo effect.

    Based on anecdote it should be a breeze, but the accepted process is around class I evidence based on trials. We ask that of all drugs for MS and for CCSVI we should ask the same. I can not explain the biology but if it works great.

    We say we do not believe that you should be paying for an unapproved, unvalidated (in the context of trials) treatment

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