Monday, August 30, 2010

Summary of Soon to Be Released CCSVI Study

charchot's first illustration of multiple scle...

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Dr. Marian Simka, who, working out of Poland, has perhaps performed more CCSVI liberation procedures than any other interventional radiologist in the world, has released the following summary of a soon-to-be released research paper. Its findings are dramatic, and have already provoked much discussion on CCSVI sites around the web and on Facebook.

Dr. Simka's summary:

"CORRELATION OF LOCALIZATION AND SEVERITY OF EXTRACRANIAL VENOUS LESIONS WITH CLINICAL STATUS OF MULTIPLE SCLEROSIS" Simka M, Ludyga T, Kazibudzki M, Latacz P, Świerad M, Piegza J EUROMEDIC Specialist Clinics, Department of Vascular & Endovascular Surgery, Katowice; Poland.

ABSTRACT: Background. Chronic cerebrospinal venous insufficiency is suspected to play a role in pathogenesis of multiple sclerosis.

Objective. Assessment of the correlations between patterns of venous lesions and clinical characteristics of multiple sclerosis.

Methods. Localization and degree of venous blockages in multiple sclerosis 381 patients were evaluated using catheter venography. Analysis of clinical severity included: Multiple Sclerosis Impact Scale-29 (MSIS-29), chronic fatigue and heat intolerance assessment.

Results. Venous blockages were found in 97.1% of the patients. Abnormalities were more severe in older patients. No correlation existed between duration of the disease and severity of venous pathologies. Patients with younger age at onset of multiple sclerosis presented with milder venous lesions. Significant correlations existed between severity and localization of venous lesions and clinical burden in terms of MSIS-29 and chronic fatigue scores, but not of heat intolerance.

Conclusion. Prevalence of chronic cerebrospinal venous insufficiency among multiple sclerosis patients is very high. Indirect data analysis indicated that venous abnormalities are probably congenital, slowly progress, but are unlikely to be caused by multiple sclerosis. Their severity and localization significantly modify clinical course of this disease. However, they are not likely to directly trigger multiple sclerosis, but there may be another factor initiating the disease."

The above summary is short, but packed with tantalizing nuggets of information. Of course, the first item that leaps off the page is the finding that 97.1% of MS patients have venous blockages. Needless to say, this is a very compelling number, and begs for a comparison with the commonality of such blockages in healthy subjects. Unfortunately, to my knowledge no study using catheter venography on healthy patients has yet been done, so this data is simply not available. We can assume that the incidence of venous abnormalities in the general population would be much less than 97.1%, however, venous anatomy has been so little studied that I don't think such a statement can be made with complete confidence. Hopefully, the full paper will expound on this subject.

It's also interesting that Dr. Simka concludes that CCSVI venous abnormalities are probably congenital, but slowly progress. This conclusion would seem to be supported by his a summary of results, which found that younger patients presented with milder lesions, and older patients with more severe ones. I'm not sure of the biological mechanism that would lead to congenital deformations slowly getting worse with age. I had assumed that malformations present at birth would remain relatively stable throughout a subject's lifetime, or at least stabilize once the subject reached maturity. Again, we can only wait for the full paper to be released to get the good doctor’s thinking about these findings.

The correlation between severity and the location of lesions with disease presentation is also fascinating. It will be quite enlightening to find out just which locations correlate with higher degrees of disability.

Perhaps the most tantalizing piece of info in the research summary is the declaration that CCSVI venous abnormalities are "not likely to directly trigger multiple sclerosis, but there may be another factor initiating the disease". One can only wonder at the evidence found that prompts this statement, which would suggest that CCSVI treatment alone may not put the much hoped for kabosh on the MS disease process. Then again, perhaps taking venous abnormalities out of the picture will halt the disease despite whatever other factors may be present.

I guess we'll just have to stay tuned for the release of the full paper for all of these questions to be answered. In all likelihood, though, as with practically all research related to MS and to CCSVI, the full paper will raise at least as many questions as it answers. Grrrrr...

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  1. Marc, there was a study of catheter venography done on MS patients and healthy subjects, Al-Omari & Rousan (2010), which found 84% of persons with MS had CCSVI (sample size 25) and no healthy controls had CCSVI (sample size 25). I think the initial diagnosis was with another method, but I do know the results were verified with venography.

    The Simka study does have me eager for more. He's presenting it at a Frankfurt seminar in October, put I didn't catch where it will be published first.

  2. And perhaps you saw this today--another piece by Dr. Ashton Embry, this one about why MS Societies are not acting in the MS patients' best interests.

  3. would love to hear the Wheelchair Kamikazee will react to this post:!/note.php?note_id=104209316307229&ref=notif&notif_t=subscription_updated

    after his rebuffal to my post on his blog 2 weeks ago refelcting what Ashton is saying:

  4. Will this be in a peer reviewed journal with proper citations? I checked and it seems like this is a privately funded publication which likely means the findings will be challenged by the scientific community.

  5. Dawn-thanks for that research info. Though the sample size is small, the tremendous disparity in its findings are compelling.

    Dawn-I'm going to make longer comments on Mr. Embry's piece over on this is MS, but suffice it to say that although I admired his intellect and passion, he has some of his basic facts wrong. I can't speak to the motivations of the extreme upper echelons of the MS societies, but I can tell you that the mid-level people that work for the US society that I know personally would gladly give up their jobs to find a cure for MS. They also work for a nonprofit for considerably less money than they could make in the private sector (as did my wife for many years). And his numbers for money spent on administrative costs and fundraising are way off the mark.

    I would direct you to my earlier post "Grand Larceny", which you can access from the popular posts list on the left, which features a video tribute made by one of the NMSS employees to her MS stricken mother, who is now bedridden and in a nursing home.

    Tony-as I commented to Dawn, above, Mr. Embry has made several assertions in his piece that are simply not factual. He states that the MS societies spend 80%-85% of their intake on administrative and fundraising costs. The actual numbers: for the US MS society, 15% (you can check this at, and for the Canadian MS Society, 48%, which is rather high but a far cry from the 80%-85% cited in Mr. Embry's piece. You can check that number at

  6. Unfortunately, this looks to be another unblinded, non-randomized, uncontrolled study of CCSVI. Although the results may be intriguing, it doesn't appear to add much to the existing body of scientific knowledge, and is unlikely to sway the research community. I think it's important that the practitioners of the "liberation procedure" share their anecdotal experiences, patients whose hopes have already been raised so high need to realize that these findings have very little significance to the question of causality.

    BTW, these are just the opinions of another interested MS patient. My skepticism is merely based on my modest scientific training.

  7. 97.1% of MS patients have venous blockages. Wonderful news!
    I am wondering why I am so special to have a high degree of disability but during the procedure here in the States, the doctor did not find any blockages or narrowing?
    So, I fall in the 3%. I am also wondering in this 3% are they newly diagnosed, stable and young? So much to learn.

    Mary Kay

  8. Kind of dissapointing as you pointed out there is not to much there. You would think this would be eazy to prove or disprove. I put my wife on LDN 4.5 mg and it is working wonders I threw out the Avonex. There is no point in telling the Neuro that the LDN works because it is out of her feild and she does not want to deal with it, I had to get my family Doctor to prescibe it. This is all Egos and I quit, as long as the LSN works on my wife why argue with idiots. Instead of falling 25 t0 30 times a day she walks down the stairs with her hands in her pockets. The Doctors do not want to deal with this desease as long as the drug companies are kicking them back. It is a shame I was one of those AH's who beleived in these people. Live and learn.

  9. As always, Marc, thanks for the fair and balanced approach. You have great information and analysis.

  10. Dear Red,
    My IR has treated a large number of pwMS who were told they had no pathology by a major research hospital, which has now apparently stopped offering CCSVI care as they re-assess their technique. He consistently found classic Zamboni lesions ( Both jugs and azygous), where they said there was none.

    This is why we welcome the SIR and their commitment to doing proper interdisciplinary treatment studies. Thank you to the brave neurologists who are helping them. They are having their first conference next month!
    They should have some much needed information to share with the IR community next March at their annual meeting.

    Marc, I wondered at Dr Embry's numbers too. The 48% in Canada is high enough to support all his other comments. If he is using hyperbole it is a shame. The 48% is the figure I referred to disparagingly on your revolution post earlier.
    Even with the lower admin/fundraising costs in US, ( 15%) 2.4M for such a promising therapy is unacceptable, and reflects the conflict of interest many of the most publicly critical about the research. They are refusing to cooperate with IRs in their respective institutions. They are quoted locally by a neurologist, saying the research neurologists advising NMSS fear for the lost income if CCSVI is popularized......... no joke, same folks on the NMSS committee choosing the studies to fund.
    The quote is: When i asked his opinion of CCSVI he rolled his eyes and said "there is no money in it!!"" That is why they are slowing this down. Dr Embry is right even if he is wrong about the accounting he quoted. As the director of a foundation that funds MS research he does know something about it.

  11. Marc, you may have seen this already, but today Dr. Sandy MacDonald was on Canadian AM and stated, "If you look at the research that’s been funded by the MS Society, they’ve not funded anybody that has expressed interest in CCSVI...and indeed, at the meeting that was in Ottawa, I was told yesterday by [Dr.] Alain Beaudet myself that anybody who expressed public interest in support of CCSVI was excluded from the [CIHR] committee that actually was addressing the issue. That seems fatally flawed to me.”

  12. hi marc,

    these are hectic times, lots of rush, lots of blaming and lots of pointing fingers.

    i agree with michaelr, it is very unfortunate that dr simka's study will not follow the standard route for scientific publications. it does take some credibility out. quantity is not quality. from comments here i have the impression that many of the folks are ready to blame institutions. let's remember that ms is a world wide disease, it is hard to believe that big pharma (assuming that they are all mean) can hide/stop a discovery as the ccsvi/ms link. many countries (if not all developed countries except the us) have some sort of socialized medicine. it is in their interest to find a cure for ms and make us productive tax payers to support the system. more over, i've worked in research in france and here in the us (private and public). it is clear to me that most researches will go for the glory more than for the subventions. it is a mater of ethics: we do research because 'there is no god higher than truth' and not because of greed (look at the salaries public vs private). the road of subventions/money is very short where as the road of good science goes long ways. it is not because you find a couple rotten apples that you need to doubt about whole harvest (the translation is bad, i know).

    you can't keep a secret/conspiracy for long. i believe that if there is something to get out from ccsvi/ms it will come out clean and seriously. maybe not as fast as some patients would like but hey, it will come. i look for a world without ms for my daughter. as for me? i'll do the best i can but my concern is for future generations.

    thanks marc for your posts, it makes it possible to follow the happenings on ccsvi with some sanity.

  13. Marc, here's Dr. Embry's statement on administrative costs: "I have to stress that the 80-85% number includes all fund raising costs, all salaries (including contractors) and all administration. All that is left after these costs are subtracted is money for research which for most societies is 15-20% of the total take BEFORE fund raising costs are deducted. If anyone can demonstrate these figures are not accurate I will be most pleased to write a mea culpa. It seems that those who are claiming my figures are inaccurate are misreading my words. They seem to think I am talking only about administration costs which indeed are well less than 50% in most cases. However both salaries and fund raising costs are HUGE and account for the lion's share of the expenses."

  14. Marc - you said:
    "Perhaps the most tantalizing piece of info in the research summary is the declaration that CCSVI venous abnormalities are "not likely to directly trigger multiple sclerosis, but there may be another factor initiating the disease". One can only wonder at the evidence found that prompts this statement, which would suggest that CCSVI treatment alone may not put the much hoped for kabosh on the MS disease process."

    And I'm thinking that we're forgetting an intermediary step: ccsvi results in large iron deposits which are very toxic - and the autoimmune response is a response to the iron deposit. So even though you address the ccsvi, you're still left with an iron deposit that the body has to deal with.

  15. "
    Conclusion. Prevalence of chronic cerebrospinal venous insufficiency among multiple sclerosis patients is very high. Indirect data analysis indicated that venous abnormalities are probably congenital, slowly progress, but are unlikely to be caused by multiple sclerosis. "

    So what Dr. Simka is saying is, multiple sclerosis does not cause CCSVI. Duh. , what does slow, refluxing blood do to brain tissue integrity? Think - abnormal blood in/out of brain?? Pus, lesions -OH YES.

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