CCSVI a video is worth a thousand words?


Ghahari S, Forwell SJ.Social Media Representation of Chronic Cerebrospinal Venous Insufficiency Intervention forMultiple Sclerosis. Int J MS Care. 2016;18(2):49-57.

The Pied Piper Phenomenon
BACKGROUND: We conducted a rigorous review of videos related to multiple sclerosis (MS) and chronic cerebrospinal venous insufficiency (CCSVI) treatment posted by people with MS on one social media website (YouTube) that describe symptoms before and after the surgical procedure, as well as videos presented by health-care professionals (HCPs).

METHODS: All relevant videos posted from December 2009 to July 2011 were downloaded, viewed, and systematically organized. Categorical data were classified, and dominant messages were gleaned.

RESULTS: A total of 1789 videos were extracted. A total of 621 videos by people with MS and 238 by HCPs were included. Eighty-six percent of people with MS anecdotally reported experiencing some improvement in at least one symptom. The most common message was that “CCSVI is not a miracle but worth trying.” Most HCPs posting videos recommended the procedure but called for continued research.

CONCLUSIONS: Social media are conveying an anecdotal favorable message about CCSVI treatment for MS. The relative absence of videos offering a negative or more balanced perspective is a concern. Social persuasion through these videos creates a strong positive impression of CCSVI treatment, but the videos do not acknowledge the lack of supporting scientific evidence and the possible role of the placebo effect. Given the strong influence of social media on health-care decision making, researchers and clinicians should actively use social media to reach out to people with MS and describe the state of the evidence for MS treatments, both positive and negative.

There is no point commenting here as it open access and you can read it yourself. some will agree some won’t. But it shows the power of social media and why neuros need to be in that space too to give support or question ideas before they become part of dogma.

The following is the data on CCSVI from Google Trends showing you the decline in interest in CCSVI on the web.

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  • This shows you how the crowd can be misled by biased reporting. In social media circles this is referred to as the 'Pied Piper Phenomenon'. It is great pity that we people with MS are so gullible. It has now become clear that CCSVI has been one of the biggest scams in the history of MS. I get very angry when I think about all the wasted money that could have been used in other ways to help people with MS.

    • Some pwMS are gullible because their disease has progressed or is progressing with no effective convention treatment. Desperation makes people try unconvential therapies with the hope that it may work. I cannot criticize anyone for trying to alleviate their condition. Some try radical diets, some stem cell therapies, others ccsvi.

  • It really doesn't matter if the scientific community engage in social media to counter fanatics because these people don't believe in science or logic in the first place.

    What eventually happens is that some people will be pursued to try things like the "Liberation" procedure and the results will become known.It will take time, money and guinea pigs but the truth will be exposed in the end.

    • What is the truth some people swear by it some people swear about it but the scientific community have not provided data to support it. Likewise we could say that stem cell therapy is a scam too. The results today have not seen people getting up and the damage is reversed yet the scientific community is behind this hype. It has promise but that is what it is at the movement. Yes you can cite anecdotes at me just like you could with CCSVI

    • The thing with the HSCT phenomena is that it is being promoted as a potential cure for all forms of MS, but it works better the earlier you start hence the rush for overseas medical tourism.

      But the fact is that once you have progressive disease and degenerative damage has occurred, no level of immune suppression is going to halt the disease. But I would say that all of the HSCT chearleaders think MS is a purely autoimmune disease and the difference in the disease states is only due to an epitope spread of the target auto-antigen (meylin RRMS and the nerves themselves in progressive disease).

      So it really doesn't matter if the scientific community points this out, the fanatics will believe what they want to believe either because of deperation or stupidity.

    • How can you compare HSCT & CCSVI when HSCT actually targets the immune system, which is widely accepted as being faulty? HSCT trials are entering Phase III after showing astounding Phase II results, no anecdotes required.

    • When I talk about Stem cells I am not talking about HSCT. The stem cells in this case in HSCT are replacing or boosting the immune system to prevent infection from the immunosuppressive treatment which is doing the business in non myoablative treatment and are replacing your immune system with myoablative treatment. This is very effective at blocking disease activity as we have and will see.

      This is very different from stem cells aimed at repair and replacement. This is only anecdote for any activeity and the experimental data is weak.

      As to cure from HSCT the earier the treatment the better chance of long-term remission. It is the ultimate immunosuppressive and it clearly is active. However for progressive MS there are some elements of disease that it does not appear to deal with

    • All of the trials for HSCT are restricted to RRMS with evidence of inflammation. There are no trials with HSCT for progressive disease (they tride this over and over and concluded it doesn't work), but people are still going over seas for treatment wit progrssive disease. This is based solely on anecdotes.

      So in the later case it seems Mouse Doctor is OK with this but his rant is focused on stem cell treatment is as a reputable procedure as the "Liberation" therapy.

    • HSCT for progressive disease is not likely to totally successful so I would not recommend people traveling overseas. Likewise I will not say it is of no use in people with progressive MS, but happy to rant about other stem cells and liberation procedure

    • My partner was diagnosed in 2014 with PPMS. Then with RRMS in August 2015. And with possible SPMS and RPMS in between. Ps. she's not a medical marvel who magically went from PPMS to RRMS.


    • Re: "My partner was diagnosed in 2014 with PPMS. Then with RRMS in August 2015."

      Yes, it is not uncommon for pwMS to present with a primary progressive course and then go onto have relapses associated with MRI activity. We see this all the time. This is why our clinical classification system needs to be changed.

    • "Yes, it is not uncommon for pwMS to present with a primary progressive course and then go onto have relapses associated with MRI activity."

      Are those patients who present with a primary progressive course then go on to have relapses associated with MRI activity diagnosed with RRMS or RPMS? My partner's diagnosis remains RRMS (not RPMS). My partner has still had no identifiable relapses to date (but the 12 lesions between her brain and spine had to have formed at some point).

    • But you guys on the blog are talking about the 'success' of oreceluizmab in a PPMS trial. How can oreceluizmab have shown some positive effect (though I question the validity of those results) and you accept that and push it has a break though B-Call depleting treatment for PPMS, and yet HSCT which is more effective and depleting B-Cells as the chemo agents used are 'stronger' (for want of a better word) is not a sound option?

    • How can ocrelizumab have shown some effect, ProfG saw the rituximab trial data and made recommendations for recruitment to the ocrelizumab trial. This showed a significant impact. We hope that Genzyme get approval as it will give people with PPMS a choice.

      However to say that we believe that this is the whole answer to PPMS is wrong, it is not.

      I would predict hsct will do as well or as badly.

    • MRI lesions are mini relapses they are often not in clinically eloquent places so their influence is not obvious but they may allow you access to DMT

    • thank you for that! i have not had a coherent response to what exactly a relapse is yet (though i've had all sorts of different responses). somewhere along the line i concluded that unless there is some evidence that lesions in progressive ms are created differently, as long as my partner is accumulating lesions there is a place for immunosuppressive treatment, which she has received. a confirmation (finally :D) is always nice to hear!

  • This study really points to why more researchers and clinicians should be doing what this blog has done. You've provided us up-to-date insights into the research and what it likely means. In doing so, you inoculate us against scams.

    My MS Society is too careful to go out on a limb and say, "this new treatment is probably nonsense, and here's why…" The way you guys will.

    To me, the lesson here is that many, many more researchers should be talking honestly and courageously with the public if they really want to make sick people's lives better.

    • The MS societies charters really dont afford them a whole lot of luxury in what they can put out front facing the public. In fact, its why a lot of niche not for profits jump into the fray seeing the "gaps".

      This too is a double edged sword in that buckets of not for profits consistently asking for money have multiple impacts. First, patients, families, caregivers, friends etc. that tend to be those gifting donations.

      I cannot begin to tell you how many people with MS, family members, I have communicated with are really "rattled" with the consistent "donate… donate… donate" to site after site after site.

      The frontline patients associations do real work. They vett research asking for finances. They advocate. They engage in real activism. Take the MS Society UK. There are quite a few not for profits towards MS in the UK. The MS Society UK is in the face of government representing people with MS. In the USA in many respects legislators are already aware of the "Dont mess with the US National MS Society" as they will react. Instead its now much more a "Work with them as they really do make real things happen for real patients and research."

      Do we see other MS not for profits in the UK going after government? Uh uh. But researchers here at Barts do as did we and we are an ocean away.

      Patients are often on finite resources as are their families due to MS in many cases. So one has to ask "Is it responsible for a niche entity to detract from patient associations .vs. promoting them if the goals are truly towards patients and defeating MS".

      It is EXACTLY why we decided we will never take a single red cent from any person, family, caregiver towards our work. We will NOT compete as THIS is not a competition. Its about real people just like me who endure the issues and often horror of this disease.

      The patient associations have charters and they live within those boundaries and that of being publically owned in the public trust.

      Many not for profits dont seem "get that". No matter who established them they are not owned by them but are in fact owned by the public yet do not take that into their culture as entities.


      BARTS MS is somewhat unique in that real researchers are communicating direct to the public, there are others who maintain blogs as well but have not received good traction.

      It can indeed be frustrating trying to figure out the lay of the land.

      To us, whatever we can do to help in a supportive role those making real difference towards patients is simply the right place to be.

    • Anon 4:47 back again: Some great observations, thanks.

      As a patient in the US, I'm happy with the work my NMSS does, but it just failed to answer a lot of questions for me. I think the big difference is that the Barts team will say what they think, acknowledging that they could turn out to be completely wrong–because science. I'm okay with ambiguity. But not with being in the dark.

  • Its sorta a crazy deal. I've interacted and read about both procedures.

    CCSVI most I have interacted with, no help to them at all. A few however (I have not kept track of actual numbers as this study states it did via videos) state its helped with symptoms.

    Blood flow to the CNS will help one assumes anyone who has blood flow issues to the CNS?

    A few articles I'd read did mention that restricted exiting blood flow might result in weakening of blood vessels over long periods of time. A back pressure sort of scenario that "could" in time result in TIA's. No studies I am aware of.

    In respect to Stem Cells. This is a differing gig as it is still a very very emerging science. There are researchers who overstate its current usefulness perhaps in MS and those that are honest about it. There is also some unique research towards neurodegeneration in delivery of stem cells direct to the CNS.

    The media is hyping up cases where gains are made as it causes traffic.

    Regenerative medicine is emerging but still very much in its infancy in more than only stem cells. For example, here where I live the University of Rochester has done absolutely remarkable research and much much more is underway.

    Really its only been in the last 15 or so years where new forms of technology that have emerged are seeing more broadband application in both research and prospective application in health.

    It comes with good, great, bad, very bad as well as a whole lot of "we think" in proposing, research and application.

    I know several entities in general stem cell research at a few of the leading facilities by association with our work/goals. They are not blowing smoke when they speak of the potentials of stem cells towards a whole lot of disease and then some.

    Unfortunately the double edged sword exists. While the hype allows for a great base for funding research it also has other effects from pressure to accomplish to detracting from bonafide research due to misinformation bandied about.

    • It does what it says on the tin, whether you think it's scientific or not is up to you.

    • Counting videos is a totally acceptable approach for social sciences (which is what this study is). You set your selection criteria to be as random as possible, and follow through so that you're not cherry picking data. The journal reviewers would have watched closely for that, to ensure bias wasn't introduced. This is exactly the kind of study lots of my cohort did in grad school for their masters theses.

    • Counting videos may be "social science". The conclusion that "researchers and clinicians should actively use social media to reach out to people with MS" is clearly opinion.

    • It may be an opinion, but it's not without a strong theoretically foundation. Check out Inoculation Theory (it's described in Wikipedia) to learn more. My guess is that these researchers talk about it it heavily in their full paper.

  • I am disheartened by the number of people calling those who try unproven treatments (for whatever reason) stupid or gullible. In a world which promotes religion, calling people names for living religiously (in a medical world) seems empty. John Oliver did a wonderful piece on communicating scientific information: maybe instead of victim blaming, non scientists could be taught principles of science and clinicians and scientists could overall become better communicators? (i know, while i'm at it, i'll get the world order changed too).




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