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CCSVI death knell sounds again

Scanning study finds narrowed veins common, CCSVI rare


 

A new  scanning study looking at CCSVI  published online today in The Lancet is destined to launch 1,000 headlines.

Its findings appear so damning a few neurologists are already playing taps for the vascular theory of MS proposed by Paolo Zamboni in 2006.  The blinded, controlled three-centre study, funded by the MS Society of Canada, Saskatoon City Hospital Foundation, Lotte and John Hecht Memorial Foundation, Vancouver Coastal Health Foundation and Woldridge Foundation, was conducted by 13 researchers. They were lead by neurologist Anthony Traboulsee, the director of the University of British Columbia hospital MS Clinic and principle investigator into clinical trials into the safety and efficacy of CCSVI.

Using catheter venography, defined as the “gold-standard for the assessment of venous stenosis” on 177 subjects, the team found venous “narrowing” (defined as “greater than 50 per cent narrowing”) in 74 per cent of people with MS. But here’s the big surprise: similar narrowings were found in 66 per cent of unaffected siblings of people with MS and in 70 per cent of healthy controls. Using Zamboni’s catheter venography defintion, it found CCSVI  in 2 per cent of people with MS, 2 per cent of siblings and 3 per cent of unrelated healthy controls. Using the Italian vascular specialist’s ultrasound criteria, the UBC study revealed 44 per cent of people with MS had CCSVI, 31 per cent of siblings did, as did 45 per cent of unrelated controls.

To date, CCSVI scanning studies have been all over the map. Some have found high correlation between MS and CCSVI, others low correlation. Ascanning study published by McMaster University in August found zero correlation. The UBC report presents as a new outlier: it suggests venous narrowing is normal, and that there’s a lower correlation of venous structure between family members of people with MS than with healthy controls. It’s destined to be debated, discussed and scrutinized. Questions will need to be answered. For one, the UBC study departs from Zamboni’s work in that it focuses on venous architecture, not blood flow. Zamboni uses catheter venography to enter and scan the vein only after doppler ultrasound reveals measurable problems with flow or reflux. The UBC study, on the other hand, used CV on everyone. Also unclear is how the UBC researchers measured stenosis since veins are such irregular vessels. Another question is the role valve malformation plays in causing stenosis, something that can’t be detected on venography. Then there’s an interesting inconsistency across centres: UBC found jugular stenosis in almost all subjects; the University of Saskatchewan detected as many as one-third less in its subjects. Why is unclear. Relative experience of researchers? The subjective nature of venographic observation? Epidemiological factors?

Traboulsee told the press conference today they had expected to find more CCSVI and that the finding of narrowed veins in  many subjects wasn’t a concern: “We have more veins than we need,” he says. “There’s a redundancy built into the veins … It’s natural variability and unlikely to be triggering MS.” Zamboni has yet to respond to the UBC study. When he does, it will be in a a scientific journal, he said in an email, adding: “But if narrowing is the outcome measure of this study, it does not correspond to luminal defects, and thus ultimately to CCSVI.”

An editorial accompanying the UBC study written by neurologists Paul Friedmann and Mike P Wattjes sounds the “death knell” for CCSVI and asserts “it is absolutely clear that no reason exists to allocate any further resources to [CCSVI], be they financial or intellectual.” Yet in a phone-in press conference this morning, Traboulsee says that even though the research could not validate Zamboni’s research, the Canadian clinical trial investigating the safety and efficacy of CCSVI treatment remain a go.

Just because CCSVI as defined by Zamboni “doesn’t exist by his definition,” he says, it’s not unprecedented for a theory to be disproven that can lead to something beneficial to patients. He’s interested in patients’ reports of improvement in quality of life after CCSVI treatment—reduction of fatigue, improved cognitive fog and bladder control, to name a few benefits. When asked by one reporter whether these improvements could be chalked up to placebo effect, Traboulsee demurred. “I think that’s a bit patronizing to people.” Later, however, he said a “component will be placebo effect. That’s an important part of process. Is there a true treatment beyond placebo? As to how effective it is, I still struggling with that.” He admitted he didn’t know how CCSVI treatment might help, suggesting it might have to do with stimulation of vagus nerve or cytokine released from the veins. In fairness, this is uncharted territory for a researcher used to working in the pharmaceutical model; his disclosures on the study, like many of his fellow researchers, reveal multiple ties to drug companies.

Traboulsee cautions people with MS, which he defines as “leading cause of disability in Canada,” from seeking CCSVI treatment, which is not available in Canada: “Do not rush to spend your hard earned money,” he said. He estimates as many as 5,000 Canadians have been treated out of country, though that number is impossible to confirm. A registry promised by the federal government has yet to materialize. People living with the unpredictable, degenerative condition need to be patient, Traboulsee says, and await clinical trial results. These, he hopes will be known by fall 2016. Five hundred patients have volunteered for 100 spots at four centres in B.C., Manitoba and Quebec. Seven people have been treated to date.

The UBC prof also spoke of a sea change in how research is being directed–an “evolution” in  research decisions away from the “ivory tower” to more patient-based response. “Now social media determines research priorities,” he says. To listen to him speak, it seems the former vocal CCSVI skeptic has undergone an evolution as well. In 2010, like most neurologists, he shot down Zamboni’s CCSVI hypothesis, telling the Toronto Star “there isn’t a heck of a lot of evidence to support it.” In August 2010, he was member of a panel convened by the CIHR that unanimously voted against clinical trials. Interviewed on The Nature of Things in 2012 he expressed frustration that money was being directed to CCSVI that could be going to stem cells. Yet when a reporter asked today whether time and millions of dollars had been wasted researching CCSVI, Traboulsee said no. “We set forth a mandate in 2009 to fully investigate the theory and treatment.” If today’s results are any indication, that’s going to take some time and fortitude.


 
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CCSVI death knell sounds again

  1. We can’t dismiss the importance of this study. For the first time, the question is addressed appropriately: are there differences regarding vein circulation between MSers and healthy persons? To achieve this, researchers used the gold standard venography, the radiologists who performed venography didn’t know if the person on the radiology table had MS or not and the results were interpreted by radiologists, not neurologists supposedly bias by Big Pharma. Right from the beginning, Dr Zamboni was cautious with his own results saying the importance of having controls in future studies before drawing final conclusions on CCSVI in MS. The major achievement of Dr Traboulsee’s study was having healthy controls accepting the risk of venography for the benefit of science. Those results are very far from the original Zamboni paper which used the same methods than the actual study. It is unfortunately a major blow to the CCSVI theory in MS.

    • The CCSVI theory in MS has been shot down many times. Indeed, there was never any real evidence for it (CCSVI causing MS) There is of course a large amount of anectdotal, non-study based “evidence” that the treatment leads to improvement in MS symptoms.

      Dr. Traboulsee understands this, and also understands that the public good demands that sound research address the issue at hand, i.e. do the insertion of stents improve MS symptoms.

      I haven’t seen the editorial by Drs. Friedmann and Wattjes yet, but if the quote is accurate they have the credibility of a couple of electricians brought in to examine a toilet.

      • He is owned by the drug companies, pure and simple.

      • Basically its angioplasty which heart patients have daily are are never denied . If they were denied help like MS patients are it would of hit headline news by now. We are being discrimminated against if am honest with disabled hate too which is an offense

        • Angioplasty is done as a much cheaper and less invasive substitution for cardiac surgery. That is if there is a clear blockage seen in the cardiac artery. Otherwise, cardiac medications are used. Please do not pretend that people are getting angioplasties at the drop of a hat. They are not.

          • I find this very offensive and wrong to say .Plus you are hiding behind your real name which is please allow your real name to be published

          • I am sorry you find it offensive but the information is not incorrect.

          • Angioplasty for heart patients is done on a daily basis

    • There is still a problem with an untrained radiologist who is backed by relationships with Bayer, Roche, Biogen Idec, Merck Serono, and Chugai. Other authors reported relationships with these firms and others including Angiotech, Teva, Centocor, BioMS, Daiichi Sankyo, Nuron, Genzyme-Sanofi, Schering-Plough, Nuron, Genentech, Cook, Boston Scientific, Perceptives, and Berlex.
      This is a field of medicine for an Interventional radiologist or vascular surgeon educated in the field of interventional radiology.

      • Exactly. I am in year 4 and never felt better since being diagnosed. Iron and CCSVI are the culprets. Freakman is a crook.

        • My treatment over 3 years ago gave me my life back! Before I could barely walk, speak, stand, I had terrible tremors and spasms. Now I work in a automobile parts manufacturing plant operating as a robotic machine operator…how do the neuros explain that? Not that they care to anyway. CCSVI is real and treatment works.

      • If you look at the study “team”, there are interventional radiologists on it. Any physician that does research has a “relationship” with some corporation because the corporations typically donate the supplies for the studies (ie: medications, catheters) because in Canada we do not pay study participants for their participation beyond covering their costs like parking and we would have a hard time getting any participants if we they had to pay to cover the costs of the materials used for interventions in the study. Are you sure Dr. Zamboni has no such relationships? It isn’t the relationships that are suspect, it is when the researchers do not report the relationships that it is problematic.

  2. More important is that every MS drug needs to be scrutinised and who has promoted them also .Way too many have died on and have had PML .The MS drugs are more dangerous than CCSVI. Neurologists will be against CCSVI because they do not want to loose profits , shares and commissions from all the MS drugs they get on top of their very high salarys. Some even are paid more than MPs and even Prime Ministers thats the reality of it all. Major blow is too many are frightened of loosing too much money if CCSVI takes off and the real truths come out about all the bad MS drugs that have killed many with MS. Its sick to the core and whos involved also . Lots of disabled hate is going on also which is an offence . In UK I had a different procedure done to me and nearly died 2 weeks later. 2 weeks after CCSVI I had no complications at all. I am proof it is safe

  3. Neurologists are not IR  (Intervention Radiologists).  CCSVI is not MS or a neurological problem it is a vascular condition.  Because the MS Society is running the show and not including the true experts to do the proper research of course you will see this fail.  The protocol is not what Dr. Zamboni and other IRs use but,  the MS Society’s own.  Of course it is biased Dr. T. claims it is not!  If you get free money from donations, government grants, Big Pharma  and tax payers dollars from the MS Society why would you not try to disprove a theory that threatens the financial gains for this Society?  Big Pharma has a huge stake in this as well.  Because CCSVI treatment for the moment does not include Big Pharma and does not have a huge price tag (in Canada apprx. 3K for CCSVI treatment) it sure threatens them with the sales of their drugs which can cost from 15K to 50K per year for each MS patient.   Yeah sure, Dr. T. sounds so sincere with his findings and claims to continue  We shall see and we will continue to get the truth out and hopefully will get backup from the real experts who get ostracized if they step out of line.  No doubt the MS Society and Big Pharma has something to do with that too.  This is not a conspiracy theory but a conspiracy reality.

    • You do realize that the study team has several interventional radiology specialists on it, right? They might not have used Dr. Zamboni’s protocol but what they used was the ‘gold standard’ technique. Results are supposed to be easily verifiable and valid, meaning they should be easy to replicate and the results should be the same time after time. If Dr. Zamboni’s results are not easy to replicate, there is cause for question. It doesn’t mean the procedure doesn’t work to alleviate symptoms but it might mean, the problem is not with easily explained away as a narrowing of veins. There may be something happening during the venoplasty procedure itself that makes the body respond in a way that triggers some great symptom improvement.

      • One measurable change that occurs after venoplasty is an improvement in CSF flow. The researchers at Buffalo found that a year after venoplasty, CSF flow was still increasing in those treated with PTA. This is most certainly a measurable, verifiable, non-placebo improvement. “PTA in patients with MS with CCSVI increased CSF flow and decreased CSF velocity, which are indicative of improved venous parenchyma drainage.” http://www.ncbi.nlm.nih.gov/pubmed/23523158

        • This is just phase 1 in a very long study…expected to go to 2016. They will continue to learn more and they will be publishing at every juncture.

      • Team of IRs … yes of course.  But, how much experience or procedures have they done?  they have doing CCSVI procedures?  Obviously CCSVI treatments have been replicated by the true CCSVI experts.  How do you think tens of thousands got results?  Including me.  Miy results are HUGE to me.  Insignificant to those self proclaimed so called MS experts.  Why the heck would we lie?  What do we get out of that?  Come on.  Your last line … could be.  Webbing can be disturbed when catheter is used.  The valves … they should be checked too.  And narrowing?  Since when was this the issue?  Stenosis is what needs to be looked at as well.  The BC study didn’t do those either.  Some protocol the MS Society created.  No doubt conflict of interest is a Big Pharma factor.  Prof. Zamboni … conflicts?  Would be interesting to find.  Fair is fair.

        • This is the early phase of the study, Shirley. They have looked at narrowing of veins. Yes, the people with MS have narrowing but so do their relatives who don’t have MS and so do the control subjects. Now they move onto the next phase. The interventional radiologists have the same experience they do world wide in applying the gold standard techniques for detecting vessel problems using radiology. As for who created the protocol, you must realize that this study is sanctioned by a University..UBC, as all studies in Canada are. The study had to get ethics approval through them. You are going to have to decide that everyone is either corrupt or incompetent to dismiss every finding of the study. Then you are going to have to go after the journals that print the results and all the peers that review the journal articles. You are going to have to decide that they are corrupt or incompetent. You are willing to do this even though the study is in the early phases and the study head is NO WAY dismissing the fact that CCSVI works to alleviate the symptoms of MS.
          As I told others, I have a brother with MS. I would be thrilled to find out this procedure works and how it works. Perhaps we can implant electrodes to get the same sort of results on a very long-term basis. I have been involved in research. If you are doing research on the safety and efficacy of any product, they you have to use the product you are testing and without exception, the manufacturer provides the product for free to the study.

  4. All I can say is that my life for 12 years w MS Symptomology was on a downward spiral trajectory until the day I got my CCSVI treatment at Albany Medical Ctr Sept 11, 2011. After that, all MS stopped. Simple: 1+1=2 And I know I am not the only one

    • o error…. my CCSVI procedure was on Sept 9, 2011~~~

    • I agree. They are criminals.

  5. CCSVI (chronic cerebrospinal venous insufficiency) venoplasty isn’t just for people with MS. It has implications for a great many illnesses – if you believe what my CCSVI doctor does, it can be enormously beneficial for anyone who has disautonomia. Disautonomia is a condition which short-circuits the pathways for your brain to tell your body how to control all the little things that healthy people don’t have to think about, such as how often and how deeply to take a breath, how to control your bladder and bowels, how to balance, how to distribute blood and other fluids throughout your body, etc. I am Denise Baillie, and I HAD secondary-progressive MS before I went to California for CCSVI treatment this past Spring. At my last appointment with my MS neurologist (the same one who said I was secondary-progressive) he declared my MS “stable”! That just isn’t supposed to be possible once your MS becomes secondary-progressive – it’s supposed to be nothing but a steady, downhill slide toward death!

    I was only hoping that my fatigue and heat intolerance might be improved, but instead I received what can only be described as a miracle! It is a very simple procedure that only took about 20 minutes (although I believe it can take about twice that long) and I was awake through the whole thing. As soon as the Dr. inflated the balloon in my left jugular I asked if someone turned on a light because the room seemed to get brighter; when he was working on the right side I broke down in tears because the headache I have had non-stop for the past 30 years simply ‘melted’ – for the first time in my adult life I didn’t have a headache! I practically crawled into the clinic with my walker (I had already started looking at buying a wheelchair or mobility scooter) and the day after my procedure I was walking barefoot in the sand on the beach without even a cane! I had been on disability since 2009 and as of September I have returned to work full-time. I am no longer on CPP Disability and instead of that wheelchair, I bought myself a bike!

    How does Dr. Traboulsee explain all the people who were treated 2 and 3 years ago and are still doing great? Has he re-written the parameters of how long a placebo effect can last so that he can dismiss their results as placebo for the rest of their healthy lives?

    • I agree… It is huge. Combined with high iron in our diets it is deadly

  6. A neurologist has no business in the field of vascular medicine and this particular study has a huge conflict of interes! relationships with Bayer, Roche, Biogen Idec, Merck Serono, and Chugai. Other authors reported relationships with these firms and others including Angiotech, Teva, Centocor, BioMS, Daiichi Sankyo, Nuron, Genzyme-Sanofi, Schering-Plough, Nuron, Genentech, Cook, Boston Scientific, Perceptives, and Berlex.

  7. I am part of the BC CCSVI Registry that Dr. Traboulsee oversees. He has acknowledged that half of thesepatients have
    anecdotally reported quality-of-life improvements and some symptom (like
    fatigue and brain fog) relief. My improvements are not just
    “anecdotal”! The return of my balance, after almost 20 years of not
    being able to stand without holding onto something, has been documented
    by neurological testing by one of Dr. Traboulsee’s colleagues and has
    now lasted for over 2-1/2 years! My foot-drop, that caused me to have
    to drag my right leg, improved tremendously and was also documented by
    neurological testing, causing my neurologist to declare that my “walking
    is obviously better”. No more weekly headaches. No more having to
    take cool showers because of severe heat intolerance. No more feeling
    sick to my stomach when I turn my head in any direction…I could go on
    about more improvements!

    I really don’t care if CCSVI is
    specifically related to MS–I never cared if it was the cause of so many
    of my weird symptoms attributed to MS. I just want to be “allowed” to be tested, in Canada, to see if I have vascular problems, and if I do then have them treated–IN CANADA! I had to go out of my home country–and it’s not the money, it’s the inconvenience–but I now KNOW that, after venous
    angioplasty, my quality of life sky-rocketed! If somebody wants to try
    to improve some debilitating symptoms, they should be allowed to try!

    • Thanks, I had the same happen to me CCSVI treatment rocks.

  8. We need to talk about blood flow, not narrowed veins. For a start the problem in 85% of people treated (by a well known vascular expert in Brooklyn) is in the valves. They are malformed, have flaps, are inverted etc. The same vascular specialist said it took him 200 procedures before he was truly able to treat with authority. Reflux into our brains from a break in the blood brain barrier is causing the most harm here. We need experienced vascular specialists (in the procedure for CCSVI) to be running these trials. The cancellation for Dr Siskin’s Albany trial was most disappointing because this would have been under the control of a doctor with tons of experience. He was also my doctor and I am doing very well three years on.

  9. This should not be put into the Neurologists hands. This is a vascular problem. In my opinion MS should be taken out of the equation. Money tends to taint a persons evaluation. The Neurologists have been against this from the get go with excuse after excuse. People with MS don’t have time to wait for excuses. This has been safely done for other conditions and suddenly when you put MS into the mix it suddenly becomes dangerous. I wish they would be honest and publish the dangers of the current and past MS drugs, like Tysibri. I dismiss the importance of a study because if they really, honestly, wanted to do this properly they would have kept track of the ones who gave up waiting for them to decide if this was feasible. It was for me with many benefits. Far better than the DMD I was on Avonex with a year of flu like symptoms that lead to suicidal ideation, and while on Copaxone large welts, pain and temperature. I doubt they kept track of that!

  10. M.S causes a leaky blood brain barrier such that venous drainage would be more important . The most important question has not been answered. Does treating poor venous blood flow improve symptoms in people with M.S.?. People who do not have M.S. being unaffected by it because they are not vulnerable to triggers for brain inflammation.

  11. I do not have lots of faith in clinical trials for MS because I believe that MS has different faces. No MS is alike. Plus, MS is dependant on : the endocrine system, the lymphatic system, the gut , the health of our liver ( for detox), the quality and quantity of nutrients that our system is able to absorb, the quality of our diet, our stress management ability, the toxins and parasites we are exposed to or have been exposed to, our level of slow chronic inflammation going on throughout our body, our fitness level, name it…. The body does not work at the linear level; the body must be managed at a holistic level. And , of course, if the blood flow is compromised in any ways, then, a cascade of MS symptoms will appear. Just experience a dramatic emotional experience or eat too much salted foods for example and you can trigger MS symptoms in a jiffy. And, of course, operating on malfunctioning valves could be greatly beneficial in many cases. We all agree that blood flow is key for a healthy body. The thing is that the body is complex and that pharmaceutical drugs are certainly not the solution long-term. The body has to heal. CCSVI is a step towards a healing process. CCSVI is a step in the right direction for many. Once done, get to work !!! The healing process is demanding and demands that you commit to it on a daily basis. That will demand lots and lots of your time and will demand that you follow the best holistic coaches and functional medicine doctors you can find on the net. I am doing it and it is paying off a great deal.

  12. Every MS drug also needs to be scrutinised and those who promote them too

  13. This is so wrong. It is stated that 5000 patients in Canada were treated out of country and during the senate hearing (Oct 2012) on a National Strategy for CCSVI not 1 MS patient was allowed to testify about their POSITIVE results. Canada’s top cardiologist Dr. Sandy Macdonald was NOT ALLOWED to testify. If you do the math MSers spend between 20 – 80 thousand dollars each per year on medication through their own pockets and Phamacare programs. It was admitted that the venography study by UBC was done WRONG. Am I paying for that? What a waste. From the get go this has been SET UP for Failure. I have had the treatment done in 2010 YET I WAS NEVER APPROACHED FOR FEEDBACK BY ANYBODY. Did it cure me NO. did I expect it to, NO. Am I still on a cane NO. It was NEVER stated as being a cure. It was stated that further study was needed. Has there been? YES, In Canada, NOT REALLY. It was stopped. AFTERCARE HERE IS ALMOST A JOKE. There has been about 5 deaths associated with this treatment, usually due to inadequate care when returning to home. The death in MS drugs is in the HUNDREDS. IE PMLs or brain infections. BUT details in those numbers are not reported. WHY? Tell me where are the pockets being lined?

    • Well said.
      This has to be reiterated every day until they get it. Nothing else is working on their logic scale. I have yet to hear a logical reason on why the person who lives this life or a real expert are not allowed to testify back in October 2012. All other causes HAVE to appear. Yes, we are paying for all of this and in return we get nothing but BS.

    • Good job Robert, Keep your voice strong!

  14. The issue that matters, the one that Dr. Traboulsee has evidently begun to wonder about is do patients benefit from ballooning of their veins. Published data, study limitations not withstanding, suggests it does. Perhaps the effect of the balloon treatment is not one of unblocking the venous flow? The question for Dr. Friedman and Dr. Wattjes is are you not curious as to why several publications have shown patients quality of life improves after treatment? The data suggests it is not because of a blocked vein. As such, more not less research is needed. Research in a new direction to answer the question of why patients improve following venous ballooning…of blocked OR unblocked veins.

    Improving the quality of patients lives is really what matters. Not who is right about veins being blocked or not.

    • This research is going to continue as the article pointed out. “Ballooning veins” is not without risk so of course there are going to be questions of whether the benefit to patients outweigh the risks. If the ‘ballooning” does “stimulate the vagus nerve or cause the vein to release cytokine”, (as Dr. Trabolousee suggests is possible) and the body responds in a way that explains the improvements in symptoms patients report, then perhaps there is a way to achieve this same response without performing a risky surgical intervention. That is a win-win for everyone.

      • Dr. Arata was the first to suggest that ballooning stimulates the Vagus nerve and he balloons specifically to stimulate it. Please do not accuse Dr. Trabolousee of original thought again.

        • The MS Society will be trying to claim this down the road But to give them credit is another story.

        • What about the release of cytokines?

          • What about them?

          • I was just wondering which physician suggested that the ballooning might release cytokines that lead to the improvement in symptoms.

          • healthcareinsider what is your real name please.You are hiding behind

          • Lynnie, I work in a province where a nurse or any healthcare employee can be fired it they are thought to be criticizing their employer. If you find that to be “hiding”, then I guess I am hiding. I really don’t want to lose my job.

          • Youre very weak then for not being honest and truthful wonders what else you have hidden You wont be trusted

          • Yes okay, myself and MANY others on here are “weak and not to be trusted” because we chose not to provide our names. You Lynnie, however, are a bully and chose to intimidate those whom you cherry pick because you don’t agree with what they have to say. I hope you aren’t trying to take a stance of moral authority here. Perhaps you should bully MS Dragon, etc and the many others who also are not providing their names and accuse them of being “not honest, not truthful, not to be trusted, weak and hiding something.” Somehow, I doubt you will do that because you actually upvoted some of those people including “lorimayb”…do you think that is her/his real name?

          • You have bullied everyone on here not me am being honest and truthful. Truths hurt . You find it good to be so sarcastic towards anyone whos involved with CCSVI for some reason and I know why too.You are trouble making if am honest on here.cyber-bully can hide behind the anonymity of the Internet which you are doing . Everyone else has a name on here .Its an offense what you are doing and covering your own back . As for bullying have had that done lots to me via NHS staff have kept the telephone number of and information too, where they telephoned me at home asking me not to speak out about CCSVI . Have kept so much proof and printed off and what you are also doing is disability hate crime is regarded as an aggravating factor under Section 146 of the Criminal Justice Act 2003,targeting me with the comments you have used

          • Lynnie, please go away.

      • Oh my … are you thinking of going down the Big Pharma route to avoid the scary balloon?
        Sorry but I couldn’t resist.

        • I’m sorry, did I suggest that pharmacology would be involved? Perhaps electrodes could be implanted instead.

          • Having equipment installed? Why would I go through all that? When a very simple minimal evasive venogram can be done? I found this procedure so much better than getting my teeth cleaned at the dentist. I doubt implanting equipment is as minimally evasive as what I expierenced.

          • For you the balloon plasty may have worked long-term but from Dr. Arato’s website, it appears some people are having to have it more than once and subsequent results aren’t always as positive as the first time (reason unknown). It is also a very expensive procedure. If the possibility existed to stimulate the same response with a small implantation (they are doing this in the brains of people with parkinson’s) and are trialing it for very treat resistant depression, it might provide a much longer term, even more effective result. As a great fan of science, I am certain Shirley, that you will want them to develop the absolute best course of treatment possible for everyone, not necessarily the one that has worked best for you.

          • Pardon, healthcareinsider: Tracing vascular and venous causes of MS, ALS, Parkinson, Alzheimer syndromes or other “inflammatory neurodegenerative” conditions does not allow to make profit of something that can be sold. A fatal circumstance in our society!

          • Say what??? The equipment that is used for the procedures like angioplasty is already being “sold”. It is inevitable that some sort of equipment and personnel benefit from treatments offered. The reality is that in the Canadian healthcare system we have a finite amount of resources. Unlike the US, a person cannot just book themselves in for an angioplasty at fairly short notice to alleviate symptoms. Do you realize how long people are waiting for procedures here for conditions that are not life threatening? If you don’t, ask about the wait for hip-replacement surgery or gynecological surgeries. It might be unacceptable but it is reality.

          • I agree the expense is overwhelming. But, when you have lost something that most take for granted in their daily lives … it is something we just do not want to lose again.
            For me the fatigue was unbearable … I felt like I had the flu all the time. And that is without taking any of the DMTs. That is gone … starting year four! It is something I just do not want back.
            The implant idea sounds like a possibility … hopefully I will become a reality.

      • When you talk about “risk’, consider the risk involved in the so-called disease modifying drugs, particularly Tysabri, with many deaths and cases of PML, destined to end in death, that is RECOMMENDED to many people with MS! I’d take the “risk” of a procedure that has been found to be safe during its 40 years in use rather than a drug that has been in use less than 10 years, and, in fact, was pulled from the market because of its danger, only to be returned when the FDA felt patients could decide whether or not they would take the “risk”. People should be allowed to make their own risk/benefit analysis with venous angioplasty! I know I did and have the quality of life improvements to show for it! My before/after videos can be seen on youtube–look for my name/channel and MS Mobility Improvements.

        • lorimayb, I understand that you are frustrated. I have do have a brother with MS and of course I would love to see things better for him and every sufferer. I do also know that there are risks and benefits with every treatment available. The reason a person with MS can make their own decisions is because research exists on different treatments. Suppressing research is not the answer.

          • I certainly don’t want research suppressed! I have been advocating MORE research! One of the main problems is that research costs money and the pharmaceutical companies are the ones with all the $$$ so drugs are the main focus of research.

            Canada should be following the Declaration of Helsinki and be allowing people with MS to have venous angioplasty if they want it and the information could be recorded for research purposes. Progressive forms of MS have no treatments available so I cannot understand why this treatment can’t be tried instead of just letting people steadily deteriorate–I thought this country had compassion but I have been proven wrong!

            I will say that I am glad Canada is finally going ahead with actual treatment trials instead of just diagnosis and prevalence trials!

      • Safety has been established with seven publications. Contrary to opinions the science shows that venous ballooning is safe. Human physiology is incredibly complex and far more interactive than realized. Simply put there is no magic bullet. Is there even a single caregiver for MS patients that is satisfied with the current options? I respectfully disagree, research on this topic is dwindling.

        • Michael, I don’t mean research in general. I am talking about this study in particular. This is early days in this study. It is a multi-phase study that will go until 2016 according to the article. The finding that many people have narrowed veins is the first step of the study. The study continues to explore why CCSVI works to alleviate symptoms of MS.

          • I agree that there are likely many reasons that some symptoms improve (even if only for a short time) with angioplasty. But if one is wondering if it is due to stimulation of the vagus nerve (perhaps changing the output of inflammatory cytokines), I’d like to remind everyone that Cerbomed has an external vagus nerve stimulator available in Germany, and testing is almost complete at the Feinstein School of medicine testing this stimulator (which is worn on the ear) to see if cytokine output is changed. We should have word soon. Please know that the vagus nerve needs an average of 4 hours of stimulation per day, not just one ‘zap’. We also don’t know how much of the relief experienced by some patients is due to the use of heparin (or other blood thinners). Because this patient population is at a higher risk for venous thrombosis, and strokes, heart attacks, I would think a control “sham” study would need to include use of a blood thinner (and perhaps an intracranial pressure lowering drug such as Diamox, which costs all of about 8 cents. Much is to be learned, but should be learned in clinical trials, and not conducted by doctors asking for full fees for such procedures from patients. I do not think that charging full fees is a “study” at all, but, not unlike big pharma, a way to pad the pockets of those who are taking advantage of a desperate population. Very disheartening.

          • I am not sure what you mean by your comment that “much is to be learned, but should be learned in clinical trials….” The physicians in these trials will not be charging patients for the procedures at any rate because in Canada patients do not pay. I have actually known physicians who have donated any fees they made for study work back into a fund for future research. I do not think you can generalize that all physicians are in this for a dollar.
            When I said that pharmaceutical companies usually supply the medications trialed in their studies I meant exactly that. When THEIR meds are being trialed, they supply them. Incidental meds required for other trials will be supplied by the study.

  15. I see several glaring problems with these studies. The first and most obvious is that they are done by neurologists and not by vascular specialists. And neurologists, like my Former one, Dr. Freedman, know precious little about vascular issues. In fact, it is questionable if they know anything at all about MS – listen to him create his own definition here http://www.youtube.com/watch?v=NhKci3UzSGE of what Multiple Sclerosis means.. Perhaps the reason for this confusion is that MS falls under the heading of “autoimmune” and “autoimmune” is a theory, not a fact. And it is a theory that has not got one hard fact behind it to back it up and absolutely no logic attached to it at all.

    Another of our neurologists’ favourite words to bandy about re venoplasty is ‘placebo’. The word has historically been used in connection with drugs, not procedures. Feeling better can indeed be a placebo affect but it is difficult to call most of the positive effects of venoplasty placebo – like being able to walk, to feel things, to taste things, to urinate normally (Some have to use a catheter; others go way too often), to bend over without doing a swan dive into the floor, to recall things and on and on, yet there are people out there who have gotten out of their sick beds and happily gone back to work after venoplasty. Perhaps neurologists are not aware of this because they do not listen to their patients.The neurologist (one of Dr. Freedman’s crew interrupted every single thing I tried to say with ‘I know! Now about this other thing.’ Five words into my answer to the second question was another,’I know, Now about…’ and etc etc for the entire visit.

    Our improvements are ‘anecdotal”! They don’t tell the press that so is what they use to diagnose us with, along with an MRI that shows lesions. Lots of different conditions show up with lesions, not just MS. In fact, many former MSers have found out on their own dollar that they in fact, have Cpn or Lyme. Both are caused by psychotic little bacteria called spirochetes. Some have found out that their CCSVI was caused by spinal chord injuries that twisted or otherwise blocked the blood flow causing similar symptoms and so jumped on by neuros and labeled MS. “Don’t Test for anything else” is the motto of our MS neuros. If they did, they’d be in the unemployment lines.

    I could write a book but I’ll only add one thing here and it is about your run of the mill journalists – a group that Anne Kingston definitely DOES NOT belong to. They do not research, they do not even think about what they are writing. They grab on to some phrase and then bastardize it beyond recognition. It would not surprise me to discover they ghost write some of these “trial study’ results. It also would not surprise me to find them accepting money or perks to write the trash they write.

    Got university aged kids? Try to avoid sending them to McMaster. Used to be a good school but after publishing that swill on MS/CCSVI that they recently did, well, it does appear they are slipping badly as a university if higher learning. There was nothing ‘high’ about that report – except maybe the authors.(pun intended)

    • The team conducting the study includes several interventional radiologists. These are the people who invented angioplasty.

      • The team conducting the study includes several interventional radiologists know squat about CCSVI.

        • That is not quite accurate Shirley. From what I understand those interventional radiologists went and studied the procedure under some experts who have been doing it for some time.

          • Yeah? Who? Going for a day in learning the technique does not make them expierenced even if they learned from an expert. Dr. McDonald is the only doctor in Canada and I know he was not included. Why he wasn’t … well, I suspect because they wouldn’t have like his findings. Didn’t meet THEIR protocol.

          • I am quite certain I read about it here on Macleans Online. They went outside of Canada for several weeks. Given that they are already well versed in doing angioplasties, the venoplasty should not be too difficult for them to grasp. As for Dr. McDonald, I would not know why he did not participate but if he doesn’t live in Vancouver or Saskatchewan, he would have a difficult time actually participating because UBC is running the study and it is partnering with Saskatchewan. I have known physicians to take sabbaticals to join others in studies but this study is very lengthy.
            I did read a plan for the study. The 1st phase involved using ultrasound, MRI and the catheter with dye to look a the veins of all of the participants for stenosis, those with MS and those who do not have the illness (including many who are closely related to those with the MS). The 2nd phase will involve “dilatation of the the veins” (venoplasty) for 1/2 of the MS sufferers. The outcomes will be looked and published. They have until 2016 so they are obviously doing some long-term followups.

  16. “CCSVI” and its treatment by “liberation” was obviously junk science from the start. The hypothesis is easily rejected by reference to known physiology, anatomy and clinical experience with removing jugular veins. See my blog from 2009, written just after the announcement of the “breakthrough” by CTV, for details.

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

    MS with its chronicity and variability in progression is a magnet for charlatans. Zamboni is just the latest in a long line.

    I don’t understand Traboulsee is so ambiguous. I suspect, like some neurologists, he is afraid to clearly state to patients the stupidity of “CCSVI” out of fear of being accused of being in the pocket of Big Pharma.

    • The real fear for all MS Neuro’s should be that soon they will be held accountable for intentionally denying MS patients a treatment that could have improved their quality of life. These Neuro’s know there is a vascular connection but they were afraid of losing their cash cow. They have done everything in their power to discredit the only treatment that has a chance of actually helping people with Neurological diseases. They will also be held accountable for all the misdiagnosis of the so called MS disease. Their goal is to keep their customer base rising and keep the ineffective drug treatments flowing. If CCSVI treatment helps one person then anybody with an once of compassion would do everything in their power to provide that treatment and let the patient and their doctor determine the risk benefit factor. We all know the outcomes from progression in MS, Parkinson and Alzheimer. Any small quality of life improvement is a major consideration. It is unfortunate that a small number of self serving doctors have put their own gain, ego and power above the best interests of their patients. Dr. Colin Rose, you are one of those doctors and I truly hope you are now retired and will never have a medical impact on another human being.

      • “Any small quality of life improvement is a major consideration.” And the amazing thing they manage to suppress is that the quality of life improvement for 1/3 of people is major”. People who have been educated to believe in “science” are blinded by their belief in this new “GOD”. But just like many priests serving all the other Gods, many of the science “priests” are nothing more than self serving thugs who relish the idea of people with MS never being to empty their bowels properly again. Many of the MS symptoms are clearly autonomic too. Dr Arata fixes them in people with Lyme disease and other illnesses. One young lady with chronic Lyme recently came to him from the Mayo Clinic (who could do nothing for her). And he fixed the fixable symptoms for her, just as he did for my wife. Dear neurologists, you cannot keep the lid on this much longer. Your drug companies will happily pay fines for your delaying tactics, but it is very likely that some of your leaders will do time in prison. It is a criminal act to let people (like my wife) suffer needlessly for at least 3 years. (A radiologist in Victoria General hospital, healed symptoms for 2 people with ms there about 3 years ago. (He got in major trouble for doing it!). Vic general is the hospital where my wife spent about 5 weeks on death row, (Several people died in her ward) and nobody bothered to tell us that people could be treated for these horrible autonomic symptoms.

      • That is the corruptive power Big Pharma has over our healthcare system.

    • Junk science from the start? What about http://www.ms-info net, Mr Colin Rose? There is shown why, when and by whom junk science really took over in MS research. For making sense, both immune and vascular findings must explain what is seen to happen in the MS patient’s brain – and its veins!

  17. Who cares what it is called? If you have an ultrasound done and it is found that you have blocked veins, why can’t we just get them unblocked? Who cares if it doesn’t do anything for MS patients “they” can say what they like – just unblock my veins!! The liberation treatment in case some people don’t know…. is not a cure for MS. It is just used to unblock the veins so that there is more oxygen and blood flow to the brain. Anyone out there wit or without MS want to have your veins open so that you can have the proper blood flow and oxygen to your brain???? I Do and I am very sick, tired and angry about this being denied to me!! – Jaydean Wszolek

  18. Mis Kingston – maybe you could ask Dr Traboulsee why his research is published behind a paywall in an English medical journal. To read his magnum opus (and the accompanying editorial) I have to shell out $63.
    In the United States, researchers who get government funding are required to publish in journals which any taxpayer can read.
    As well as supporting his research. I have to pay to an English publishing house to see the results.

    • You mean it’s worth the paper this BS is written on? I wouldn’t pay a plug nickel.

      • What is your attitude going to be if and when the study returns with a result that CCSVI works for MS patients and it is legitimate therapy?

    • Maybe Albert, you could ask Ms. Kingston if the study had to go to a renown international medical journal because suggestions were made by certain Canadian journalists that the study head and the process was “suspect” before it was even launched. If the study was then published in a Canadian journal, the seeds of suspicion that is was rigged, would be complete.

  19. CCSVI is dead. Long live CCSVI. One question remains: what will those press-obsessed “MS” neurologists do when they can’t make a living any more because nobody will listen to them, and drug companies don’t give them a nickel? A lot of accountants are going to get nervous when the half-million dollars per hundred drug guinea pigs suddenly dries up. Hospitals are going to get tired of them wasting their space and expertise doing product development disguised as science.

    In the neurology game, it’s becoming fashionable to play both sides of the fence, but some of them just can’t help themselves when a microphone or a TV camera is pointed their way.

    Neither “MS” nor CCSVI are going away soon. Neither are the talented and energetic people who sincerely want to help them, and to whom they are more than a means to an end.

    • So true. Thank you for that.

  20. Just cause you feel “better” after a treatment does not mean it works. This fellow claims he was cured of MS, http://www.youtube.com/watch?feature=player_detailpage&v=Kfc4A9cHQTY And he does not seem to be lying, seems a credible testimonial. Liberated by the power of Dr. Jesus!!! At least prayer has fewer side effects than vein stenting. Really, as Richard Feynman said “The first principle is not to fool yourself and you are the easiest person to fool” (it applies to everyone, this author included). Remember an anecdote can be persuasive, but the plural of anecdote is anecdotes, not data.

  21. If the tests are done in Canada, they are junk science motivated more by money and politics than concern for patients. And what other surgical procedure requires Blind studies?? NONE. Blind study and placebo are words designed for drug testing and that is where they should stay.

  22. First of all, the study doesn’t show how badly these veins had blockages. Maybe people with MS have WORSE blockages. Also, if that many people have problems with their veins, shouldn’t this make us worried? Why would there be so many venous problems but not nearly as many problems with arteries? It doesn’t make sense. Also, it is claimed that there is no problem with stenosis–there are many other veins to compensate? I think that Traboulsee doesn’t really understand blood flow. It is usually not just narrowing of veins in people with MS, there are intraluminal artifacts etc. Well, we will see–it doesn’t spell the end of the CCVSI theories. It could be just a sign of something else–like a problem with the autonomic system, as Traboulsee mentions. There are others exploring this since the autonomic system and especially the vagus nerve does control constriction of the veins. One thing we do know–thousands are claiming relief after treatment for CCSVI. If it is just placebo, wouldn’t it also have worked for any of the ‘miracle drugs’ for MS out there? Why are there not many making claims of improvement with those?

  23. Zamboni I never claimed that CCSVI was THE cause of MS, only that is a common occurrence is people who have MS. It is conceivable that CCSVI complements the autoimmune theory in that is provides a feasible manner in how permeability could form in the blood brain barrier, thus permitting the immune system access to the brain. CCSVI also addresses how lesions are centralised (venocentric) near the portion of the brain proximal to the blood drainage veins.

    Traboulsee claims to be unbiased though his first involvement with CCSVI in 2013 was a perversion (http://ccsviinms.blogspot.ca/2014/12/scientific-misconduct.html) of what could have been a proper investigation of the phenomena. Kingston’s article regarding the trial in 2017 also leads one to believe that he is doing his best to subvert another investigation into CCSV.

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