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Julie  Stachowiak, Ph.D.

Research Directions on CCSVI

By June 22, 2010

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The National Multiple Sclerosis Society and the MS Society of Canada have committed 2.4 million dollars to fund seven research projects looking at different aspects of chronic cerebrospinal venous insufficiency (CCSVI). CCSVI, impaired draining of blood from the brain due to blocked or narrowed veins, is thought by some experts to be a direct cause of MS.

American teams awarded research money are:

  • Dr. Jerry Wolinsky (University of Texas Health Science Center at Houston) is going to use the same ultrasound methods that Dr. Zamboni used, in order to see what the association is between CCSVI and different types of MS, as well as see if other imaging methods can confirm the ultrasound results.
  • Dr. Aaron Field (University of Wisconsin School of Medicine and Public Health, Madison) is using MRI scans and ultrasound techniques (the same ones used by Dr. Zamboni) to look at the veins of people in the early and later stages of MS, as well as people with other neurological diseases and healthy people.
  • Dr. Robert Fox (Cleveland Clinic, Cleveland) is also using MRI scans and ultrasound to compare the veins and brains of people with MS and people who have had a CIS to healthy people and people with Alzheimer's disease. They are also incorporating measures of atrophy and MS symptoms, as well as brain and spinal tissue from people with MS who have died (to see what is happening to these tissues in people with CCSVI).

Canadian teams awarded research money are:

  • Dr. Brenda Banwell (The Hospital for Sick Children, Toronto, Ontario) is looking at veins of children and teenagers who have MS and comparing them to people without MS of the same age to see if there are vein abnormalities at an early age in people with MS.
  • Dr. Fiona Costello (Hotchkiss Brain Institute, University of Calgary, Calgary, Alberta) is comparing people with MS to people with other neurological diseases and healthy people to see how important vein abnormalities are in MS disease activity.
  • Dr. Carlos Torres (The Ottawa Hospital, University of Ottawa, Ontario) is using MRI scans to look at veins and iron deposits in people with MS and people without MS.
  • Dr. Anthony Traboulsee (UBC Hospital MS Clinic, UBC Faculty of Medicine and Dr. Katherine Knox, Saskatoon MS Clinic, University of Saskatchewan) are looking at how prevalent CCSVI is in people with MS and people without MS (including family members, such as identical twins), using catheter venography, ultrasound, and magnetic resonance venography. They hope to figure out which screening method is most efficient.

Although these studies are funded for 2 years, research teams are asked to provide interim results every 6 months.

I know that many of you may be disappointed that there are no clinical trials to study interventions (procedures to correct the venous abnormalities) in people with MS and CCSVI. In order to conduct such clinical trials in a scientifically sound manner, many questions must be answered, including what is the best way to determine if CCSVI is present (imaging/screening techniques) and what impact CCSVI has in terms of MS (there are some people with CCSVI findings that do NOT have MS). The studies that have been published have just been too varied in their results to say that there is a definitive answer to these questions.

To learn more details about these upcoming studies, read the full news release from the MS Society (click on the links below each study description in the news release): Over $2.4 Million Committed to Support 7 Initial CCSVI Grants to Determine the Role of CCSVI (Venous Insufficiency) in MS Disease Process

Tell the National MS Society and the MS Society of Canada what you think of the research direction that they are funding in the comment section below.

Read more about CCSVI:


Comments
June 23, 2010 at 2:19 am
(1) Bobby says:

Not funding McMaster or Buffalo is a joke.
Doing no procedures a joke. Your international board, did not have one research pioneer included.
Pushing CCSVI research as your crutch to delay treatment so the NMSS can push drugs through their Fast Forward division is conflict of interest. Why in Canada is only 52 cents of each donated dollar going to the good of people with MS.

June 23, 2010 at 5:01 am
(2) Allison Malcolm says:

My aunt is currently fighting for her life and is being denied CCSVI treatment that has been shown time and time again to work, because it “is in a research phase.”

There are no negative side effects to CCSVI and in fact is done for vascular patients regularly.

With little to no side effects and a safe procedure, what more could an MS patient want? This is an opportunity to give my aunt back some portion of her life with no risk of making her health worse?

Your research may be a scientifically sound (and filled with all the arrogance of the scientific community), but while you do your research MS patients across Canada are watching their health fade and their lives disappear. I am not denying that research should be done, but only CONCURRENTLY with allowing MS patients to have this non-invasive, cheap, quick and effective procedure done. The cost to benefit ratio in this situation does NOT require or call for research to be completed first.

The fact that you are denying treatment is CRIMINAL. I hope you are held accountable for expediting the progression and death of MS patients.

June 23, 2010 at 5:25 am
(3) Andrea Hagen says:

I pray that the day will come where you are held accountable for what you are doing(or should i say not doing). What a waste of OUR money to go and look for blocked veins and then not fix them when you find them!! To top it off, you give these studies to neurologists who don’t know a damn thing about veins!The guy who called ccsvi a “hoax” gets to do the research on it. Have you taken even a second of your precious time to look at the before and after liberation videos? People who were in wheelchairs are now walking. People who had to use canes, are now running! But yeah that’s just placebo. Well let me know when you get the drug that gives this kind of placebo. The proper researchers should do their study to determine the correlation between the two diseases but for now they are exactly that- two diseases. We are not asking for treatment for ms, we want treatment for the blocked veins!!!

June 23, 2010 at 9:39 am
(4) JennyBoroj says:

The vascular link to MS was found back in the 1800′s, this is not new. In August 2009 at the World Meeting of the Union Of International Phlebologists from 47 countries unanimously voted in favour of officially including the stenosing lesions found in CCSVI as a link to MS. There is ample research out there already. Please see following link for published research:

http://ccsviworldwidevictory.com/CCSVITimeline.aspx

If there is published research already in existance, we cannot cherry pick what we like and don’t like.

June 23, 2010 at 10:10 am
(5) Marlene Campbell says:

I am not going to tell you what everyone else has already said. I have totally lost any faith I had in the MS Society. Any donations that I or any of my family or friends are giving are now going to a facility that will actually perform the procedure. The 2.4 million of funding that you have given toward research into CCSVI and what it is going to test is a slap in the face to every MS sufferer in Canada. Any person with MS that passes away after this is on your head. You might as well of strangled them with your own hands.

June 23, 2010 at 10:15 am
(6) Dennis and Hazel Young says:

Dear Julie: Your support for the no-procedures CCSVI clinical trials is a bigger disappointment than the so-called research projects themselves. There is no need for us to read anything that you write. Please don’t send us any more of your e-mails and I’ll remove you from our distribution list too.

June 23, 2010 at 12:33 pm
(7) Virginia says:

The arrogance of the so-called experts is mind-numbing. If these persons had to spend two weeks with the frustration(and pain in my case)we feel moving our bodies to do the slightest thing or see the pain and desperation of their loved one, maybe things would change. These experts have little empathy by dismissing the liberation treatment. Just the thought that I might/could walk on the beach again, brings tears to my eyes.

I contribute and urge others to contribute to Myelin Repair Foundation whose sole purpose is to help those unfortunate souls that have this crappy disease by restoring myelin to our broken nerve connections.

I met some pretty lame neurologists on my search for a keeper. To the neurologist that told me, “It’s a great time to have ms !” Ok, doc, you walk in my shoes(ugly ones with AFO on left leg) for week and see what “a great time” you have!!

Dismissing the possibility of what the liberation treatment
might/could do should not be so callously tossed aside. To do so insults the dignity of everyone hoping for some relief or little ray of hope. I guess you just don’t get it–unless/until you get it.

June 23, 2010 at 12:33 pm
(8) Shirley Renshaw says:

Are you really a person with MS? Why are you not on the side of CCSVI? How is paying you off? Come on you have got to be kidding me. Your angle is as skewed as all the deniers. Obviously you have an agenda. If you don’t post this I will have all my questions answered!!

June 23, 2010 at 12:51 pm
(9) Jayne Thomas says:

Quite honestly, I have nothing to say to you..your arrogance and lack of respect for those that pay your wages, is appalling…nuff said..

June 23, 2010 at 1:33 pm
(10) Vlad Stefanovic says:

I find it interesting that your questions that are still left to be determined are actually superfluous to the discussion. Does it matter what the “best” imaging techniques are? Does it matter what the impact of CCSVI is in terms of MS? I mean we’ve been calling a bunch of stuff MS symptoms whent we maybe should have been calling them CCSVI symptoms. Who cares. The point is that treatment brings relief. Just like a root canal, a low fat diet, wort removal. Something is wrong; fix it. This is a no-brainer.

June 23, 2010 at 2:27 pm
(11) Maxo says:

You won’t get nasty comments from me, Julie. The nasties come from self-appointed experts trumpeting shaky anecdotal evidence that is not replicable. Keep on trucking.

June 23, 2010 at 3:06 pm
(12) Marc says:

Let me start by stating outright that I am the writer of the “Wheelchair Kamikaze” blog. While I originally held a position very similar to Julie’s, I’ve recently revised it, and now think that treatment trials should be at the forefront of CCSVI research.

Having said that, the rudeness and ignorance of some of the previous posters on this thread is appalling. Julie is indeed a sufferer of MS, and simply because her opinions differ from yours does not give you license to wish her ill. Those doing so should be profoundly ashamed of themselves.

The idea that the CCSVI liberation procedure is the precise equivalent of the angioplasty that is done on cardiac patients is completely incorrect. Angioplasty is done on arteries, which are completely different anatomically than veins. The CNS venous system is largely unstudied, and inexperienced doctors doing the procedure can indeed cause harm.

Yes, we’ve all seen the miracle videos on YouTube and other sources, and the results are indeed impressive. What we don’t see are the many patients for whom the liberation procedure has not resulted in improvements (and there are many), nor the patients who have actually seen a downturn in their condition following “liberation”. The ablation of valves in the veins of the CNS seems to result in catastrophic consequences for a handful of unfortunate patients.

As I stated previously, I do advocate expedited treatment trials, but the studies funded by the MS societies are not without value. CCSVI is still theory, not fact. Many of the assumptions made regarding the theory are shaky at best. The liberation procedure itself needs refinement, and equipment designed specifically for use in veins needs to be developed. All of the major MS docs (Zamboni, Simka, Zavidinov, etc.) are on the record stating that much more research is needed, and that CCSVI alone does not explain MS. In the last few weeks alone, Zamboni has noted that problems in the lumbar veins, not just the jugulars and azygos, seem to play a part in CCSVI, and other doctors have noted that many patients undergoing venography are found to have problems in their vertebrals as well. There is currently no way to address stenosis or blockage in either of those two vessels.

I fully understand the desperation that MS patients feel, as I share that desperation. However, hope cannot eclipse reason, and spewing vile sentiment at those who don’t share what in many cases are ill-informed opinions does nothing to further the cause of MS, and only paints these CCSVI “advocates” as the lunatic fringe of the MS community, and does the CCSVI movement harm.

Julie has committed herself to the cause of helping MS patients deal with this beast of the disease. Some of the garbage that I’ve read on this thread directed at her is absolutely nauseating. Shame on those who would resort to such infantile acting out.

June 23, 2010 at 7:24 pm
(13) Marc Stecker says:

Just a note-the phrase “major MS docs” in my above post should actually read “major CCSVI docs”…

June 24, 2010 at 11:19 am
(14) Vlad Stefanovic says:

I hope that I was not considered one of the vile spewers but if I was let me remediate my comments. I have been focusing most of my remarks on the language of this open debate more than the science of our situation. I believe that we are facing entrenched interests with a particular schema in which MS is a mysterious disease with an unknown cause, without cure, but which can be ameliorated with expensive and sometimes toxic drugs. They have so much faith in this worldview that they are hoping alternative views will go away because although they may be in part “plausible” they couldn’t be in fact true. And so we go at a turtle’s pace.

And so what happens is that they use words like “risky surgery” instead of “potentially groundbreaking treatment”

It is very important to find out what the “best imaging techniques” are in the long run, but at the same time, there are people willing and ready to take much greater risks because the alternative is so distatasteful. People who will climb into a tin can headed for the moon with a slide rule and a protractor because the shuttle hasn’t been developed yet. Refine everything. Always. But let the explorers blaze a trail, keep track of their success and go forward.

And I do apologize if I insulted you; that was not my intention.

June 24, 2010 at 4:05 pm
(15) Shirley Renshaw says:

Julie, I am sorry to have offended you on a personal level and I do apologize for that.

This issue of CCSVI has me so worked up and trying to figure out why on many questions I have.

Once again I very sorry for my comments.

June 26, 2010 at 4:34 am
(16) Liberty Watchman says:

The CCSVI debate is only a microcosm of the the total healthcare debate. And there are only two questions of any importance in these debates:

1) Who should have control over what is or is not done to a living human being?

and

2) Who should have to pay for it?

The answer to #1 is intuitively obvious. The owner of that human body should have complete and absolute say over what does or does not happen to it.

Yet the rights a person has over his or her own body are being eroded day by day (in all regards, not just medical).

An individual with MS should have the right to received any treatment that he or she is willing to pay for. It’s really that simple. You want bee stings? You should have that right (and generally do). You want angioplasty? You should have that right too, but you don’t.

What’s the difference? Bee stings are not regulated by the government, but venous ‘surgery’ is.

Until the monopoly power of the AMA is broken up, healthcare treatment will always be horrifically expensive and advances in medicine will always be glacially slow (at least compared to what the speed would be in a less regulated market)

At this moment, MS sufferers like myself, are unable to exert control over our own bodies because of the monopoly gatekeepers. You can’t have angioplasty without a doctor’s order (at least in North America and the UK). Doctor’s are afraid to write those orders because they might loose their license to practice medicine for embracing ‘untested’ or ‘unapproved’ medical procedures.

Fine, let them keep their monopoly only let it be a monopoly of recommendation rather than monopoly of prohibition. Let AMA doctors ‘recommend’ that you not have angioplasty because it has not met the rigorous testing they believe is important. But at the same time there should be other tiers of medical professionals who can write those medical order and perform those procedures freely according to their own medical opinion.

Go to the the AMA doc and receive safer treatment at a higher price. Go to the unemployed Roto-Rooter guy for your angioplasty and accept the higher risk for the lower price. It should be *your* choice.

You have that choice now in the form of Medical Tourism to other countries. But we should have it in North America, the UK, Australia, and any other country with a single monopoly system.

#2 – Who should pay? Let’s leave that for another post on another day. Suffice it to say that *both* private insurance and public insurance reinforce the monopoly over medical care.

Until the AMA/Government/Big Pharma/Private Insurance monopoly is broken, only two outcomes are possible:

1) Hundreds of millions will die each year from lack of care

or

2) The world economy will collapse under the weight of the world’s every increasing debt.

I write about #2 at Libertywatchman.com

June 27, 2010 at 6:46 pm
(17) susan says:

Although the MS Societies and MS researchers have chosen step in the direction towards studying the CCSVI condition you have to admit the strong reaction, suspicion and frustration from MS sufferers is somewhat justified in many respects considering that these organizations and MS specialists from the very beginning have reacted with such a lack of support and ridiculed many of the vascular medical professionals involved in initially pioneering the CCSVI as condition and its possible link to MS – they gave no hope and all negative responses to the CCSVI discovery. Now suddenly (mostly due to the pressure of the MS Community) have SUDDENLY changed their direction on this and it has left many MS people angry and skeptical as to what their true intentions are in regards to finding the answers.

July 28, 2010 at 12:02 am
(18) MSG says:

When I first saw that there were going to be studies done I told my husband that they would find a way to kill it before it takes place of the $$$$$$ from the drug companies. When I 1st ask my neuro about this she said that there was nothing to it and it would never take the place of drugs. She did not get the grant but she sure tried to and had no belief in it at all. Why would neruo’s get this anyway. It seems to be a vascular-neuro cooperation would be necessary. Whenever anyone tells me they will ride in my name I tell them to pick someone else that believes in the MS Society and does not think they just run a racket for the drug companies. Now I will tell them this story and tell them to give elsewhere.

November 15, 2010 at 6:25 pm
(19) abe joseph says:

my daughter 43yrs old with three children is in a wheel chair with MS.I need some news on the research doctors who received 2.4 million dollars.I need news on the ccsvi.What is the cause of the delay???

October 8, 2012 at 4:51 pm
(20) THX says:

HAZEL YOUNG and others, I get results similar to HAZEL YOUNG from 500mg of regular niacin. My walking goes from difficult to natural and largely effortless during the flush (about 20 minutes or so). I have found extended-release niacin to provide less dramatic improvement but for a much longer duration. I take 1000mg extended release niacin 3 times per day. A total of 3000mg per day is quite a bit and I take it under doctor supervision.

I recommend seeing a Naturopathic Doctor (N.D.) if you want to work with nutrients or anything natural (as niacin is a nutrient). An M.D. (most doctors are M.D.’s) gets virtually no trainng in nutrition (roughly a week or less). When I asked about my results with niacin, my neurologist had “No Idea.”

Please be aware that vitamin B12 problems frequently mimic M.S. symptoms.

The book, Could it be B12, is a real eye-opener.

IF ANY OF YOU CAN GET THIS MESSAGE TO HAZEL YOUNG PLEASE DO SO !!!!!

Good luck everyone

June 7, 2013 at 12:09 am
(21) jafPoefe says:

Получить быстрый заем прямо на банковскую карту в городе Нюрба и во всех других городах через интернет теперь стало возможным всем.
Одобряют и отпраляют деньги за несколько минут.
Подробнее: http://ezaem.blogspot.ru/

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