Wednesday, 24 February 2016

Waning Interest in CCSVI

Medical Tourism for CCSVI Procedures in People with Multiple Sclerosis: An Observational Study.Metz LM, Greenfield J, Marrie RA, Jette N, Blevins G, Svenson LW, Alikhani K, Wall W, Dhaliwal R, Suchowersky O. Can J Neurol Sci. 2016 Feb 4:1-8. [Epub ahead of print]

BACKGROUND:Many Canadians with multiple sclerosis (MS) have recently travelled internationally to have procedures for a putative condition called chronic cerebrospinal venous insufficiency (CCSVI). Here, we describe where and when they went and describe the baseline characteristics of persons with MS who participated in this non-evidence-based medical tourism for CCSVI procedures.
METHODS: We conducted a longitudinal observational study that used online questionnaires to collect patient-reported information about the safety, experiences, and outcomes following procedures for CCSVI. A convenience sample of all Albertans with MS was recruited between July 2011 and March 2013.
RESULTS:In total, 868 individuals enrolled; 704 were included in this cross-sectional, baseline analysis. Of these, 128 (18.2%) participants retrospectively reported having procedures for CCSVI between April 2010 and September 2012. The proportion of participants reporting CCSVI procedures declined from 80 (62.5%) in 2010, to 40 (31.1%) in 2011, and 8 (6.3%) in 2012. In multivariable logistic regression analysis, CCSVI procedures were independently associated with longer disease duration, secondary progressive clinical course, and greater disability status.
CONCLUSIONS: Although all types of people with MS pursued procedures for CCSVI, a major driver of participation was greater disability. This highlights that those with the greatest disability are the most vulnerable to unproven experimental procedures. Participation in CCSVI procedures waned over time possibly reflecting unmet expectations of treated patients, decreased media attention, or that individuals who wanted procedures had them soon after the CCSVI hypothesis was widely publicized.


I will not comment on this, in case it sets off  the crazies, but it is evident that academic interest in this subject matter has waned and publications have become few. 

17 comments:

  1. I always assumed this blog began as a response to treatments like this. It came right out and said what at least some researchers were thinking and why. Before you, there didn't seem to be a voice for science speaking honestly and directly to us pwMS. I like to think it would be harder for a treatment like CCVSI to gain as much traction today.

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    1. Hopefully you're right, we just like to present people with the facts, spiced with a little salty opinion on occasion. The more pwMS we can stop trying quack remedies the better.

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  2. "Three years ago mouse you promised me face to face in Manchester you would stop with the insults yet here you are still calling PWMS who have benefited from this treatment; Crazies. This proves you are not a man of your word in any arena".

    I do not remember such making promises in the Manchester Arena, but I have not posted a Zamboni clearing Ice/sinking in the ice which is what I said I would aim to do.

    27 April 2012
    "As promised(John & Andy in Manchester) the Happy or Sad Zamboni are no more :-)."

    http://1.bp.blogspot.com/-VW2PkRAGcRA/T5VaJqvpKrI/AAAAAAAAA9s/g9deU4ot6Io/s1600/happy+boloney.jpg

    But here is the problem.

    That is understanding the context of what is written...the crazies were not meant to imply people who say they believe that they or others benefit, but the abusive trolls that invariably arrive once such posts are made.

    Likewise there are HSCT trolls that tar the people asking generally/often sensible questions.

    What ever happened to VV (Vasillis)?

    Not sure if you or you friends agreed not to put CCSVI literatre in the toilets at our open days, but it happenned :-()

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    1. Greetings, MD. Any luck finding the cause of MS?

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    2. Hey, welcome back VV, it's been far too long!
      Yeah, we've found the cause but can't say more till we publish.
      Thanks for asking!

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    3. Well, this is certainly the claim of the century. Must be damn sure about it. Like something you have profoundly experienced yourself.

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    4. Too much time wasted studying vascular biology to think about causes I suspect :-)

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  3. I am not a troll but a physician and a former researcher in biochemistry and cellular physiology. CCSVI is not a cure but may, in some studies, ameliorate some symptoms of MS. Cochrane review states there is an association between CCSVI and MS but no large random controlled treatment trials are yet completed in this area.

    I am not really sure why the vascular theory is dead to you MD. The research, except poorly designed early studies, are not yet in for one to make a judgement either way. I do applaud researchers that are thinking "outside the box", even if they fail, because the immunological treatments of MS have thus far failed MS patients, especially progressive patients, miserably.

    The current research presented at ACTRIMs for MS progression was extremely disheartening and very underwhelming. Researchers wonder why MS patients are drawn to abstract theories, like CCSVI or HSCT? The answer is hope and yes, sometimes, false hope. Past and current treatments in the pipeline right now offer very little in terms of hope in the near future for any MS patient. This is why MS patients are "grasping at straws" because current medications are not efficacious enough with very high risk to the patient. Current medications in RRMS are better at reducing inflammation but not very good at decreasing disability (CRAB drugs-0%, Fingolimod 30%, BG-12 38%, Alemtuzumab and Tysabri between 40-42%).

    Ocrezulimab, in PPMS patients, was 23% above placebo in terms of decreasing rate of progression. This number is, for a lack of a better word, pitiful but I guess it is better than what is out there, which is nothing. Plus,there are a number or risks to this medication including multiple deaths in a RA trial previous and new concerns re: breast cancer.

    Until the research is in, it is unwise to pass judgement on any theory that is aimed to help 2.5 million MS patients, especially with the current underwhelming medications that do not adequately control this horrible disease.

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    1. As a physician.....immunological treatments have thus far failed miserably. Wonder if it is time to hang up your boots, it you cannot see any good for people with RRMS. In my humble opinion you do not assimilate data well.

      Don't you mean treatment of CCSVI may have benefit?

      Do immunological treatments work on progression then again time to read, so that you can manage expectations

      I believe the vascular theory has been assessed and found to be wanting, and trials were abandoned. However did I say CCSVI was dead to me? Did I every even say it was alive to me?

      If there are positive studies to report we will report them if published in bone fide source.

      Abstract theroires of CCSVI and HSCT ....The value for HSCT argue for the immunological issue that you are so anti. However there is a clear working mechanism proposed for HSCT that stands up to scrutiny and science rigour I would certainly not call this an abstract therory.

      The vascular theoryy did not stand up to scrutiny based on the balance of the literature. I'm waiting to see a good quality controlled study published, who is doing them what happened to Brave Dreams?

      Maybe we have to agree to disagree:-(

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  4. Ouch Mouse Doctor getting personal! I am not anti-immunological. Immune treatments are obviously a very important part of the answer but not all as witnessed by the continued disease progression in RRMS patients and especially in the progressive MS patients. Why do the anti-seizure medications stop disease progression when they have no effect on the immune system? I have no idea whether treatment of CCSVI with angioplasty will provide any benefit (or not) because no proper large double blind controlled trials are completed. Abstract theory is a poor choice of words. I just meant that MS patients are drawn to different theories/treatments as current treatments are far from perfect. We will agree to disagree.

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  5. Also, I meant that current immunological treatments have failed to halt MS in both RRMS and progressive MS patients. They have failed miserably thus far in the progressive patients. Do you not agree? Yes, the newer MS medications do work on reducing progression which is great but their numbers are far from perfect.

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    1. They have failed miserably thus far in the progressive patients.

      Yes agreed I think they are not targeting a mechanism that is important to people with progressive MS

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  6. CCSVI is a strange sorta deal from what I have read. When one considers that inadequate blood flow out of the brain (or for that matter into it) surely would have some form of impact, perhaps not onset of MS and/or relief thereof. A study last year showed in mousies a single drop of blood in the mice brains set off a immune response. Would this be the case in humans and if so how might that impact a pwMS or at risk thereof? One might consider blood not exiting freely might result in back pressure in blood vessels? Weakening them? A unnoticed TIA of sorts? Would it impact oxygenation? As another study suggests death of oligodendrocytes causing MS?

    As with many diseases in your opinion would there perhaps be multiple entry points into MS in as far as trigger causes go? Every time I read a study related to onset of MS it "sounds" like a smoking gun type thing. Could it be that the gun has a magazine with a whole cartridge of different bullets that trigger off MS? ALOT of people I know (including self) that have MS underwent extremely stressful events prior to symptoms and many I know, not the case at all.

    Lastly, dont know if you saw it. From ACTRIMS a Aussie Jr. Researcher stated that it appears with PPMS immune cells are simply "hanging around" never straying far from the CNS? Was a video done by Dr. Kantor / MS World.

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  7. That this was a subject of a research study makes me want to cry. I'm not talking about CCSVI - I'm talking about studying the uptake of CCSVI amongst the MS population.

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    1. Ha Ha...but as we have said many many times this is paper folder that costs nothing but someones time....time spent with the aim to get papers.

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  8. They just stopped doing CCSVI altogether here in Canada. After gathering evidence for a couple of years they found that it doesn't work. BUT!... it was also discovered recently that they were not doing the procedure properly as outlined by Zamboni.

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