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Julie  Stachowiak, Ph.D.

CCSVI and Multiple Sclerosis Coverage Compendium: Update

By February 9, 2010

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UPDATE: Whew! I have spent several hours going through all of the links that were sent to me and think I got most of them in one place. Scroll to the end of this blog to see the links that I retrieved from e-mails and read the comments section to see what others have sent in. I did my best to eliminate duplicates, but left the comments intact, so there may be repeats there. Thank you again for all of your assistance. Keep 'em coming.

ORIGINAL POST: I have heard from many MSers that feel that there is a strange silence in the US around chronic cerebrospinal venous insufficiency (aka CCSVI) and its potential role in MS.

While I really don't like to dabble in conspiracy theories, I'll admit that the lack of information on CCSVI in mainstream media in the US is a little odd. Rather than engaging in conjecture about why that may be, I thought it would be a good idea to try to gather the stories and articles that we can find on different aspects of CCSVI and MS in one place.

I need your help. I'll get the ball rolling by posting the links to my short articles and blogs, but I would love it if anyone with other interesting links would post them in the comments box. I want everything - personal experiences, blogs, positive reports, negative coverage, all of it...

A couple of things: 1) please e-mail me at ms.guide@about.com to let me know you've posted a comment if you don't see it appear within 24 hours (so that I can fish it out of the spam filter, which grabs things with more than a couple of external links); 2) please resend any information that you may have already sent me (for the same reason).

Thanks in advance.

Here are my articles and blogs on CCSVI to get us started:

UPDATE: Here are some of the links that you have submitted to me by e-mail:


Comments
February 9, 2010 at 10:24 pm
(1) Joan Beal says:

There is already a concerted effort to have all the CCSVI information in one place-
http://www.facebook.com/pages/CCSVI-in-Multiple-Sclerosis/110796282297?ref=ts
The problem is not lack of information. Stories have been filmed and edited and are ready to go for network television. I’ve been in touch with print and TV media for many months. So far, CTV has been the only North American network to get a story on CCSVI on the air. Hopefully, the BNAC will get some press. Appreciate the efforts to spread the word-

February 10, 2010 at 4:47 am
(2) Michael says:

Julie

Thanks for your initiative. I am really curious – what made you convinced about CCSVI validity and prompted you to take this initiative ??

Recognizing blood flow as a factor are you now seeing any connection with lifestyle modifications like diet ??

February 10, 2010 at 5:37 am
(3) Denise Manley says:

I’ve been sending emails and making phone calls to US local and national television and radio with the new about CCSVI. No one wants to hear it! I’ve been hung up on even.
There is going to be a study in Albany and they are going to offer testing and treatment to patients even if they aren’t in the study! That should say something! http://liberation-treatment.com/category/news

The Buffalo University did the first study in the US and although the results aren’t out yet they have announced that the testing should be made available to all MS patients and they are putting more time and money into another study: http://www.bnac.net/wp-content/uploads/2010/02/bnac_newsletter_02-04-2010.pdf

This is a link to a short video:
http://www.ctv.ca/servlet/ArticleNews/story/CTVNews/20100208/ms_zamboni_100208/20100208?hub=Health

I hope that you will be able to get the media involved! I know that the only reason I even know about this is the internet and the people I’ve been able to find on facebook. How many people are waiting for the ms society to call them? I’m still waiting for them to contact me! My doctor hasn’t even heard of this and rebukes anything to do with it and so do many of my friends doctors. You can’t just go get an apt. with a vascular surgeon because they still believe that MS is a disease for the neurologist!

February 10, 2010 at 7:45 am
(4) Colin Rose says:

Most mainstream media have avoided covering “CCSVI” because it is junk science. See my blog for details of Zamboni’s fantasy.

http://medicalmyths.wordpress.com/2009/11/24/the-zamboni-myth

Why CTVGlobemedia in Canada chose to hype “CCSVI” and “liberation” is a mystery.

February 10, 2010 at 8:41 am
(5) Stuart Schlossman says:

PIVOTAL MS NEWS – Leaders from National MS Society Meet with Dr. Zamboni to discuss CCSVI: http://wwwmsviewsandrelatednews.blogspot.com/2010/02/pivitol-ms-news-leaders-from-national.html
———————-
Keep up-to-date with MS news when registered at: http://www.msviewsandnews.org

February 10, 2010 at 8:44 am
(6) Stuart says:

PIVOTAL MS NEWS – Leaders from National MS Society Meet with Dr. Zamboni to discuss CCSVI: http://wwwmsviewsandrelatednews.blogspot.com/2010/02/pivitol-ms-news-leaders-from-national.html

February 10, 2010 at 10:33 am
(7) Ginger MacQueen says:

I have a blog to chronicle my pre surgery and post surgery as Im going to Poland in 2 months for Liberation surgery! Give me Liberation or Give me death! lol

http://www.iamsickofms.blogspot.com/

February 10, 2010 at 1:40 pm
(8) kathy says:

while this comment is not abt CCSVI…i went to UVA Charlottesville, Va yesterday to see an MS speciast (neurologist) and she mentioned I may not have SPMS but actually NMO (DEVIC”S disease). Ever here of it as possibly a “mis-diagnosis” & if so, what are your thoughts?

February 10, 2010 at 1:49 pm
(9) Dennis & Hazel Young says:

CTV W5 – DR. ZAMBONI’S “LIBERATION TREATMENT” – Q&As
http://www.ctv.ca/servlet/ArticleNews/story/CTVNews/20091120/W5_QandA_091121/20091121?hub=WFive

Monday, November 30, 2009 – CCSVI (the Vascular Theory of MS): Separating Fact from Fiction
http://www.wheelchairkamikaze.com/2009/11/ccsvi-vascular-theory-of-ms-separating.html

Monday, February 8, 2010 – CTV – ‘Liberation’ MS treatment scientist welcomes scepticism CTV.ca http://www.ctv.ca/servlet/ArticleNews/story/CTVNews/20100208/ms_zamboni_100208/20100208?hub=Health

NATIONAL POST – FEBRUARY 8, 2010
Test controversial theory, but treat MS patients, Italian doctor says By Tom Blackwell, National Post
http://www.nationalpost.com/news/story.html?id=2538597

February 10, 2010 at 8:16 pm
(10) japentz says:

Please disregard/delete the other post, Please use this link. This one, hopefully will play

http://www.reallynews.com/ccsvi/irishbear76/

Thanks!

February 10, 2010 at 8:58 pm
(11) Emma says:

For a different point of view….

http://digital.nationalpost.com/epaper/viewer.aspx

February 10, 2010 at 9:18 pm
(12) Emma says:

Found them:

http://www.nationalpost.com/related/links/story.html?id=2475272

http://www.nationalpost.com/related/links/story.html?id=2475285

Sorry for clogging up the comment section. You can delete those other posts, Julie. Hopefully these links will work.

February 10, 2010 at 11:06 pm
(13) Laura @ Bananga.com says:

I’m curious as to how many of you (with a definite MS diagnosis) have a chronic iron insufficiency. Wouldn’t it make sense, (to a point), if all the extra iron is piling up in the brain?

February 11, 2010 at 7:14 am
(14) Kim O says:

News Release

First Blinded Study of Venous Insufficiency Prevalence in MS Shows Promising Results
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A study by neurologist Robert Zivadinov has shown that the narrowing of extracranial veins is, at the very least, an important association in multiple sclerosis.

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Contact

Lois Baker

ljbaker@buffalo.edu

716-645-4606
Release Date: February 10, 2010

BUFFALO, N.Y. — More than 55 percent of multiple sclerosis patients participating in the initial phase of the first randomized clinical study to determine if persons with MS exhibit narrowing of the extracranial veins, causing restriction of normal outflow of blood from the brain, were found to have the abnormality.

The results were reported today by neurology researchers at the University at Buffalo.

When the 10.2 percent of subjects in which results were border line were excluded, the percentage of affected MS patients rose to 62.5 percent, preliminary results show, compared to 25.9 percent of healthy controls.

These preliminary results are based on the first 500 participants in the Combined Transcranial and Extracranial Venous Doppler Evaluation (CTEVD) study, which began at UB in April 2009. Investigators are planning to examine 500 additional subjects, who will be assessed in the second phase of the study with more advanced diagnostic tools. Complete data on the first 500 will be presented at the American Academy of Neurology meeting in April.

Robert Zivadinov, MD, PhD, UB associate professor of neurology and principal investigator on the study, says he is “cautiously optimistic and excited” about the preliminary data. Zivadinov directs the Buffalo Neuroimaging Analysis Center (BNAC), located in Kaleida Health’s Buffalo General Hospital, where the study is being conducted.

“The data encourage us to continue on the same course,” he says. “They show that narrowing of the extracranial veins, at the very least, is an important association in multiple sclerosis. We will know more when the MRI and other data collected in the CTEVD study are available.” The analyses are being conducted by an independent statistician.

The investigation is the first step in determining if a condition called chronic cerebrospinal venous insufficiency (CCSVI) is a major risk factor for MS. CCSVI is a complex vascular condition discovered and described by Paolo Zamboni, MD, from Italy’s University of Ferrara. Zamboni’s original investigation in a group of 65 patients and 235 controls showed CCSVI to be associated strongly with MS, increasing the risk of having MS by 43 fold.

Zamboni and Zivadinov hypothesize that this narrowing restricts the normal outflow of blood from the brain, resulting in alterations in the blood flow patterns within the brain that eventually cause injury to brain tissue and degeneration of neurons.

The first 500 patients, both adults and children, were grouped based on their diagnosis: MS, clinically isolated syndrome (CIS) and “other neurologic diseases” (OND), in addition to healthy controls.

All participants in the first phase underwent ultrasound (Doppler) scans of the head and neck in different body postures to view the direction of venous blood flow. MS subjects also underwent MRI scans of the brain to measure iron deposits in lesions and surrounding areas of the brain, using a method called susceptibility-weighted imaging. Iron findings on these images will be related to subjects’ disability and neuropsychological symptoms.

Of the total participants, 97.2 percent were adults, with the 280 MS patients comprising the largest disease cohort examined in the study to date. The majority of MS subjects were diagnosed with the relapsing-remitting form of MS. There were 161 healthy controls. Doppler scan results were reported on five specific criteria that affect venous blood flow. Patients who met at least two of the criteria were considered to have CCSVI. More detailed analysis of specific Doppler criteria and their association to disease status is underway.

When the 10.2 percent borderline subjects were included in the “normal” category (no venous insufficiency), the CCSVI prevalence was 56.4 percent in MS subjects and 22.4 percent in healthy controls.

In this large MS cohort, the presence of CCSVI did suggest an association with disease progression, a finding that was not shown in Zamboni’s smaller cohort, Zivadinov notes.

The finding that 22.4 percent of healthy controls also met two CCSVI criteria requires continuing investigation, he says.

Bianca Weinstock-Guttman, MD, UB associate professor of neurology in the UB School of Medicine and Biomedical Sciences and a co-principal investigator on the study, notes that the results of the CTEVD research will pose new and provocative questions about the CCSVI theory.

Murali Ramanathan, PhD, associate professor in the Department of Pharmaceutical Sciences, UB School of Pharmacy and Pharmaceutical Sciences, and Ralph Benedict, PhD, UB professor of neurology and psychiatry, also are major contributors to the study.

The University at Buffalo is a premier research-intensive public university, a flagship institution in the State University of New York system and its largest and most comprehensive campus. UB’s more than 28,000 students pursue their academic interests through more than 300 undergraduate, graduate and professional degree programs. Founded in 1846, the University at Buffalo is a member of the Association of American Universities.

February 11, 2010 at 8:38 am
(15) Dominique says:

Hi Julie, here is a full coverage interview with CTV News in Canada of Dr. Zamboni, so called LIBERATION Treatment. Once in the CTV web page, please look to your right, you will get all of the video segment that were done on the issue. Very complete indeed.
http://www.ctv.ca/servlet/ArticleNews/story/CTVNews/20091120/W5_liberation_091121/20091121

February 11, 2010 at 4:07 pm
(16) Eileen says:

On Feb 10 the TV channels BBCnews and Skynews gave good coverage of ccsvi, including interviews with doctors and a patient who had undergone the stent operation in Poland. They also gave a video presentation of what Dr Zamboni sees as the cause of MS.

February 11, 2010 at 5:57 pm
(17) Colin Rose says:

Reporting on the Buffalo study in today’s National Post.

Research Casts Doubt on New MS Theory

http://www.nationalpost.com/news/story.html?id=2548171

February 12, 2010 at 8:03 am
(18) Dominique says:

Here is a:
Recent Buffalo University study press Release.

http://www.buffalo.edu/news/10937

February 12, 2010 at 9:52 am
(19) Denise Manley says:

I left my comment here days ago with plenty of links to pages about CCSVI. Not only did it not show up here, but my emails to you have been answered via web bot telling me to fill out this online form instead.
Since then there has been 1 tv broadcast in the US out of CA on ABC ch. 7.

February 17, 2010 at 2:33 pm
(20) Dennis and Hazel Young says:

It would really help if we all had the addresses of the clinics and doctors that are actively researching all aspects of CCSVI. We need to know where to send our MRI and ultrasound results.

Calgary, Alberta, Canada

February 18, 2010 at 1:21 am
(21) wayne fenton says:

I cant get too excited about the treatment , not that i dont want to , when i first watched the w5 video it almost knocked me over i was so excited .
but i did further reading and i came to realize that this data was very preliminary and not all the facts were in ,so for me or any of us to get too excited at this point could mean a very big disapointment if things dont work out well, i am in no way saying not to have hope because thats very much what we need i think we all have had far too many let downs over the years and this direction in research seems to be a lot more on the right track than what they have been following. i myself am extremely hopeful that it works out for the ultimate best i only hope that the researchers make this one work for us . the following petition says a lot its canadian but lots of people from all over have been signing i have been watching it for over a week when i signed and its amazing how many of us are out there some for years. if any luck it will move the medical community to expediate it for us because we deserve it, enough is enough.

http://www.gopetition.com/petitions/the-liberation-procedure/signatures.html

Regards

February 21, 2010 at 2:58 pm
(22) Rebecca says:

Hello. I am the co-founder of MS Liberation in Ottawa. We are working closely with Dr. Haacke to try to expedite research and clinical testing of CCSVI. I would very much like to talk to Joan Beal as we would like to try to pool our efforts and resources. Thank you.

March 7, 2010 at 12:41 pm
(23) Colin Rose says:

It seems that Zivadinov’s “CCSVI” scanning in Buffalo has been shut down. If you call BNAC at 716-859-7521, you will hear a recording: “Effective March 4th, 2010, the CCSVI Venous Testing Program has been put on hold. Further information will follow.” In North America there remain only a few for-profit private clinics claiming to be able to diagnose “CCSVI” (knowing that the patient has MS, of course). To date, no investigator has received peer-reviewed grant money for “CCSVI” research and likely none ever will. Unscrupulous doctors in unregulated countries like Poland, Bulgaria, Italy and India can with impunity still charge huge amounts for “liberation”. “CCSVI” will probably never disappear completely and like other medical scams will always be available somewhere from some ethically challenged doctor to attract the gullible with money to spend on anything that gives them hope, false as it is.

March 21, 2010 at 12:57 am
(24) C.R.O. says:

Colin Rose, I don’t know what you’re problem is… possibly heavily invested in a drug company that would stand to lose a great deal of cash, or maybe a neurologist who doesn’t want to admit there’s something you don’t know. But, whatever it is, I highly encourage you to get your facts straight, and if you don’t want to get on board, that’s fine, but why begrudge those who have found help? My husband has MS and this constricted vein theory answers to so many of his difficulties that neurologists were just guessing at. No one is making you have it done, so get a grip.

May 10, 2010 at 5:43 pm
(25) Ms Alz says:

Why is all the research limited to MS? Why isn’t anyone researching the connection with all other kinds of neuro problems? What about Parkinsons, Alzheimers? etc. Dr Zamboni was obviously interested in the MS because he was personally involved in that, but perhaps a wider view needs to be taken.

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