The only thing liberated was their wallets

Patients are left with costs as discredited MS therapy circles the drain, writes Colby Cosh

by Colby Cosh

Bad medicine: Zamboni’s MS study made insupportable claims, new journal studies show

Alessandro Vincenzi

“Liberation therapy” for multiple sclerosis is dead; yet long will it live, not only in the hearts of desperate MS patients, but in their bank balances too. In 2009 an Italian physician named Paolo Zamboni issued a study claiming that MS sufferers had poor rates of blood outflow from their brains. He proposed a complex new etiological theory of MS on this basis, proclaiming the existence of a new syndrome: “chronic cerebrospinal venous insufficiency,” or CCSVI.

Zamboni’s study made bold, almost patently insupportable claims about differences between the blood vessels of MS sufferers and healthy persons. His theory of CCSVI seemed to contradict much that is known about MS and failed to account for obvious features like the midlife age of typical onset. The research got little attention outside Canada, a country hit hard by the global north-south gradient of MS rates. Inside Canada, it only took one round of zingy, insufficiently critical news stories by CTV and the Globe and Mail to make Zamboni a hero.

Hundreds of patients, perhaps thousands, have travelled the globe seeking venous angioplasty for MS symptoms, usually against doctors’ advice, and millions of dollars have been invested in CCSVI and “liberation therapy” surveillance after pressure was applied by shouting patients and opportunistic backbench politicians. But after years of empirical setbacks for the whole notion of CCSVI, it is all looking like money down the drain.

The first question to be answered about CCSVI ought to have been, “Is there actually any such thing?” Attempts to reproduce Zamboni’s results have met with mass consternation; researchers cannot even get to the point of determining whether CCSVI is treatable because they cannot detect it as promised. Radiological imaging does not seem to exhibit consistent relevant differences between MS sufferers and healthy patients, and Zamboni’s original criteria for a CCSVI diagnosis are hardly even coherent or well-specified enough for practical use.

The April issue of the Journal of Vascular and Interventional Radiology, for example, contains a report of a Texas study of 276 MS patients and 70 healthy controls: ultrasounds of their necks produced “findings consistent with CCSVI” in four per cent of the MS group—and in seven per cent of the non-MS group. Examples of results like this could be compounded ad nauseam: the Texas paper is not even the only negative CCSVI-Zamboni result in that issue of that journal.

What went wrong? For those seeking an answer, I would recommend a paper open-published in late February by the Journal of Cerebral Blood Flow & Metabolism. Conveniently, its title is: “What went wrong? The flawed concept of cerebrospinal venous insufficiency.” This paper is important because the doctors who wrote it are among the leaders in using ultrasound and other means to study normal venous blood flow. Zamboni depended on their research for background when he was trying to devise diagnostic criteria for CCSVI. If CCSVI were real, they might be expected to be the first to applaud.

They’re not applauding. The authors go point by point through Zamboni’s proposed criteria, showing how he repeatedly misinterpreted earlier literature on vein behaviour and confused abnormal blood flow events with harmless typical ones. They emphasize the basic implausibility of Zamboni’s theory and show that it conflicts with non-Zambonian findings on MS and venous drainage. And they criticize the “open-label” nature of early CCSVI studies and patient registries assembled on the fly for political reasons. The best-designed of these, the authors note, was probably one paid for by the government of Newfoundland; a brusque June 2012 press release announced no evidence of objective benefit, but no peer-reviewed publication of the results has followed.

The “What went wrong?” paper concludes unequivocally that “only a complete halt to [liberation] therapy seems sensible.” The story of CCSVI will not be over until the last frustrated Canadian pays the last Bulgarian or Bengali doctor to be “liberated” for the last time; but from a scientific standpoint, the proverbial fat lady is about halfway between the main performance and the encore. On web forums for MS patients, liberation therapy is already receding into the shadow world of I’ll-try-anything curatives, there to linger with cobra venom and upper-cervical chiropractic.

It would be nice to be able to ladle out guilt for this ignoble episode in medical history, but it is not clear that even Zamboni, whose wife has MS, did anything consciously wrong. On the other hand, the doctor is not likely to miss any meals because he messed up. A Canadian MS patient who forked over for repeated unnecessary angioplasties might.

For more Colby Cosh, visit his blog at macleans.ca/colbycosh




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The only thing liberated was their wallets

  1. wow .. and I thought this was a reputable magazine?? You obviously didnt do your research Mr. Cosh! If you wish, we could stick the facts in your face should you wish to take the challenge!??

    • I was shocked coming from maclean’s.

  2. I wonder who actually pays Mr. Cosh and Macleans. The treatment has worked for too many people to one degree or another. I think that’s very irresponsible to report only certain studies.

    • No. No it hasn’t.

  3. Who is this idiot, Colby Cosh? I had the procedure, and my improvements have been profound!! He obviously doesn’t know what he’s writing about!!!

    • I suspect that this was printed in order to pave the way for Dr. Freedmans new treatment that has killed 2 people so far.

      • That’s for sure. No question about it.

    • Apparently he’s just some blogger/writer guy with some uneducated opinion on something he obviously knows nothing about….like he has any creditable background to write an opinion on this subject, you’ve gotta be kidding me! Lets move on to something else…(yawn)

  4. Wow, nice opinion piece…opinion being the key word!!!! The benefits I personally received from having the CCSVI procedure performed were immeasurable and allowed me tremendous quality of life improvements. I also know people who did not have any benefits from having the procedure completed however, I can’t imagine where we would be if we were to discredit every scientific advancement because they did not work equally for everyone.

  5. Who asked you to write this, Mr Cosh? Obviously such a biased article has a purpose. Too many of us have improved and too many serious researchs are being done for us to ever change our mind about CCSVI and MS!

  6. Mr Cosh, you shoud not write something you know nothing about! Do your research!!! For sure “your wallet” is liberated!!!

  7. Well, the usual MS DMDs, i.e. Interferones, Tysabri etc., cost several times the amount of a liberation therapy. Not to mention their sometimes horrible side effects, very costly as well. Not to mention their doubtful effects. But well, obviously Mr. Cosh just wanted to do some CCSVI-bashing. Please note that MS patients are not stupid.

    • As well as the 79 deaths that Tysabri has caused through PML to date.

  8. You are a Hack journalist for offering such dribble. I’m tired of reading articles from uneducated lackeys like you! I have (had) MS & CCSVI. The angioplasty I had to correct my venous draining issue has taken away my chronic fatigue, muscle spasms, MS hug, and other such symptoms. Most importantly, the procedure has taken away the fear I carried for years; wondering if today would be the day the I lose the ability to walk or some other faculty that we all take for granted. I wish you could live one day in my body while I was in the middle of a full on MS assault. How would you handle going blind in one eye for a while, smacked by a dizzying array of double vision, fearful burning headache, difficulty breathing, brain fog (although to be honest, you seem to have a touch of that from what I just read), numbness in hands..arms..feet..legs, muscle spasms that just won’t stop & in very odd places like your eye..lip..chin … all of that in one day, hell in the same moment of time! What would you do? Do you want to know what I did? I screamed like hell on the inside and panicked. I also vowed not to let MS win or take me. I researched and learned everything I could (you may want to try that sometime). I challenged the autoimmune theory <– mostly because it's still just a `THEORY`. I met some wonderful doctors, researchers, and patient advocates. I participated in a study & when I was armed with enough knowledge on how to treat my CCSVI, I found an interventional radiologist and challenged him on his knowledge of CCSVI and only when I felt he understood what I understood, did I have an angioplasty to correct my CCSVI. I've been MS symptom free for almost 2 years now. I follow a diet that promotes endothelial health am greatful for real doctors and scientists like Dr. Zamboni, Dr. Hubbard, Dr. Sclafani, Dr. Haacke, Dr. Ferral, Dr. Arata and so many others! If you'd like to educate yourself, you can start with http://www.ccsvi.org :-)

  9. This article looks like it was written at the request of the Canadian neurologists. They are already holding the current Canadian government and Health Minister captive – not some journalists as well?

    • Yeah, so much for “freedom of the press”. The 5th estate is supposed to be the last bastion of freedom and truth. We should feel let down.

      • The press is the 4th estate and “freedom of the press” as you say means that Mr. Cosh should be able to write whatever he chooses.

        • He is allowed to write and say whatever he likes but he should only present it as an “opinion” – not fact.

        • Not lies, unless it’s fiction. And he should have to declare ANY perceived conflict of interest to his position.

  10. You really want to know what went wrong is the injections I would take daily at a cost of $1550/month with NO improvements at all, only a crater in my leg and relapses to beat the band!! Yet I had venous angioplasty 2 years ago and ALL my symptoms have disappeared, not a single relapse. Call it what you will Mr. Cosh, this is not my imagination and there are trials that have different results, you are focusing on the negative. Incidentally what are your credentials to making your opinion even voiced? I’m more of an expert on this disease than you will ever be. Wake up! I have no regrets about angioplasty and would do it again in a heartbeat if needed. Judging from your round face you may indeed need angioplasty for the heart and you’d be lucky to be allowed to have it in this country unlike people with M.S. Go ahead and slam it but you are not only slamming those with M.S who have had success with this treatment but you and other naysayers are also hindering valuable research to treat to other conditions that may be largely due to CCSVI.

    • I am very happy for you Kerry!

      I had the treatment just a few months after it was available in the US. I have had this condition for so long and did not expect much but … better blood flow. I have relief from a few symptoms and that has made my coping skills so much easier to deal with all the other symptoms I have and know will never be restored. This is the best I have felt since treatment and that is what matters. I wish this would have been available so much sooner but as we all have found it was known but swept under the carpet by the nay Sayers. I am very angry because of this.

      • I had my CCSVI treatment near the start of it all and I went in the same as Shirley – just thought hey if the blood flow isn’t right let’s get it fixed if I feel better from that great if not well no harm. I wasn’t going to get all bent out of shape one way or the other. As a Canadian if something isn’t right medically it should be treated here, so if my veins are showing abnormal flow and there’s a way to normalize it you’d think I could have it done, but thanks to the hooplah created over it being MS related the neurological community stepped in and stopped it all well… for people with M.S. that is. Forget the term CCSVI and lets just say vein stenosis or for those who were found to have it May Thurner’s Syndrome etc… Due to having M.S. we are often pooh poohed over our symptoms. Often doctors assume it’s M.S. related and treat us as though we should just be alright with that. Often Neurologists don’t even care to address symptoms. They will often shy away form providing referrals to physiotherapy. Some on first visits will tell mobile patients to get ready for a wheelchair or hand over their books written on M.S.. Some will put down the patient, belittling them and their symptoms. Even treat them as though their symptoms are mental, not due to M.S., test them blindly and not thoroughly. Or even find out the symptom is real and instead of referring them to proper specialists, e.g. urologists, gastroenterologists, ENTs etc… We are treated as though dealing with our issues are nothing but a waste of their time. Especially if we don’t want to take DMDs (Disease Modifying Drugs) whether because possible side effects scare the hell out of anyone with a rational mind or otherwise. I have gone through many symptoms my past neurologist pooh poohed. When I came back from my CCSVI treatment my benefits were also pooh poohed. THe saddest part is our specialists who should know by now while we can look great it doesn’t mean everything is alright, likewise you would expect them to understand though we look bad how we feel may be quite different. For me sensation was vastly improved by the treatment, so too was my heat tolerance (Uhthoff’s Phenomenon is one of my symptoms), Also my spasticity was greatly lowered freeing my limb and chest and lowering my acid reflux due to esophageal spasms which had caused me to choke. Unfortunately I did restenose and in one area became occluded so I had to go again to the U.S. to even find this out (THANKS OHIP, DOCTORS WHO STAND IN THE WAY ETC…) and pay out of pocket. If I didn’t have M.S. having my veins checked wouldn’t have been a problem – something is wrong in THAT! So what’s wrong in all of this – take away the term CCSVI and lets go with improper blood flow, improper mechanics in the venous system that can be quite often easily fixed fairly cheaply here at home. We’ve been denied this right, our human rights have been squashed because we have the label M.S..

    • And what are the credentials of Anne Kingston who has supported for years CCSVI with the acclaims of the same individuals who are actually bashing Mr Cosh?

      • She gets the facts and does actual unbiased JOURNALISM instead of just mouthing OPINION from cherry-picked sources!

      • What are your credentials Pixel10? Mind you I wouldn’t believe what you wrote anyway. Afraid to show who you really are means … you know squat too.

  11. Colby, I see you are in Edmonton….so am I. This opinion piece obviously wasn’t researched very thoroughly and I would like to offer you the opportunity to see for yourself!! You see, I have MS and I also have CCSVI. Most of my worst symptoms are from my CCSVI and I have seen this procedure work with my own eyes on more than 10 of my friends(that’s people I know and have seen in the flesh); which is why I am flying down to the U.S. on Monday to get my CCSVI treated. I invite you to come and see me both before and after! My home phone number is easy enough to find in the phone book because we are the only Baillie’s that I know of in Edmonton. However, my cell # is 222-9083. PLEASE call me and come see me before I leave Monday morning. Or at least come and see me after I get back Friday night. The number of people who have gotten this treatment worldwide is 35-40,000 and there are most definitely at LEAST a couple of thousand Canadians among them. This procedure works and I am finally going to be able to see for myself. Do you have the guts and journalistic integrity to see for yourself? Call me! I am here at home most of the weekend just packing and getting ready for this life-saving trip! Really! Annette Funicello’s husband and neurologist said it helped her; Montel Williams said it helped him; doctors with MS who have been treated say it helped them, thousands of ordinary people with MS say it helped them…..why are neurologists and some journalists so determined to ignore these facts?? Please Colby, come see for yourself before you badmouth CCSVI anymore! Call me!

    • Denise, what a generous offer…I do hope that Mr. Cosh has the integrity to take you up on your offer. Maybe he will see another side of what MS/CCSVI really is and maybe more careful and compassionate in his future media reports.

    • I have had the CCSVI procedure done in 2011 and I am well since then. This Cosh guy must be an idiot. Does he know anything about the risk of CCSVI procedure compared to the risk of certain drugs used in MS (Tysabri, Gilenya and so on)?

  12. I wish the best for MS sufferers who include members of my family and friends. But I think everyone, whether afflicted by a disease or not, needs to think about what standards they hold their medical practitioners to and how to react when those standards are breached. My expectations are that doctors implement only those treatments proven effective through controlled studies that are peer-reviewed and approved. Treatments that don’t meet those standards are not, by definition, medical, and should not be administered by a doctor. A doctor who violates that standard is at best irresponsible and at worst fraudulent, greedy, and deserving of our outrage, just as we as a society reacted with outrage to tobacco companies when they suppressed evidence about the health effects of their products.

    Instead we can direct our outrage at any journalist who contradicts our hopes about a promising therapy (as all 8 previous comments in this thread do), but if we make a habit out of it, how will we know when a misled or unscrupulous doctor is attempting to defraud us of money and time? And anyway, isn’t MacLean’s just the messenger here?

    • The doctors that violates that standard – are you talking about neurologist that push the drugs on us that have been approved with only 30% effectiveness rate, equal to placebo?

    • Maybe if you actually had MS yourself you would understand the anger patients condemned with this label have when the best treatment of symptoms attributed to this condition is constantly being bashed by ignorant naysayers with conflicts of interest! This treatment may not work for everyone, just like any other medical treatment, but to make it unavailable to the people it might help is just plain CRUEL. Please see my before/after video–naysayers wanted me to just deteriorate until I die!: Walk a mile in my shoes

      http://www.youtube.com/watch?v=yrH9GH0N4ck

    • Too bad you do not have CCSVI. If you did you would fully understand our plight. This is not about proper ethics it’s about the best interests of nay sayers and Big Pharma backing them.

  13. hey Colby you missed the really big story – like pharma have been swindling MS patients for the last 50 years – Prof Ebers doesn’t make it into the media though – funny that… oh and by the way 180 years of post mortem evidence proves MS has an underlying venous pathology… have a read of it before you waste everyone’s time writing another piece on MS and CCSVI

    https://dl.dropboxusercontent.com/u/66292082/Damning%20Indictment%20of%20Clinical%20MS%20Drug%20Trials%20%20Ebers.pdf

    • It is surprising that journalists are so afraid to take on BIG PHARMA and really expose the corruption and the ongoing corruption of the doctors that are associated with this wrong doing. I knew from the start of the CCSVI controversy that this was real and important otherwise they (MS Neuro’s, MS Societies) would never have protested so loudly and gone to such lengths to derail and discredit this major breakthrough. The MS Neuro’s and all that are influenced have made it very clear they will not lose their lucrative business without a very nasty fight even if it is at the expense of those who suffer daily from this tragic label.

  14. I wonder who and how much paid Mr. Cosh to write this shame.
    Just go to PubMed to find out that CCSVI exists and that therapy with angioplasty works.
    Only the studies done by neurologists dn’t find CCSVI.
    And they have important conflicts of interest.

  15. It would be nice to be able to ladle out guilt for this ignoble episode in medical history…

    Funny sentence from one in such disgusting errand, just for justifying that the pharmalobby fight to to keep their Cashcows in their cubicles. A existence, kind of, that has the guilt by writing like he do, but propably does not understand, just the money is running in. Hope the taste in his mouth will reflect the quality of his errand.

    Colby Cosh would have been very welcome as a gatekeeper in Auschwitz during the WW.
    One can se it in his eyes…

  16. So sad to continue to see misinformed posts like this, a full 5 years after CCSVI hit the scene. CCSVI did more to help me than any of the MS drugs I have ever taken. It removed my debiitating fatigue, helped my cognitive issues and removed the chronic head pain I had for years before my procedure. Dr. Zamboni is a genious and a huge hero from my point of view, along with all the other doctors who are thinking outside of the box and actually helping people with MS live a better quality of life for the first time in many years. Get your facts straight before you put anymore dribble like this out there.

    • So true Prof. Zamboni is a true hero. He has helped thousands look for relief … whether they are small or huge. Obviously Mr. Cosh has no idea what relief feels like when suffering from a vascular condition.

  17. This sounds like internal fighting…Anne Kingston should reply. I don’t think anyone regrets their treatment, just perhalps the results + the learning curve-which has and will continue to be steep. Perhalps disappointed is the word that should be used. Still FAR less expensive than the DMD’s=disease modifying drugs.
    Just my opinion.

  18. How unfortunate that you did not first do a survey of everyone who has gone for a CCSVI Procedure. Had you done so, you would have found that most of those who you consider wasted their time and money have had improvements. Perhaps not the biblical improvements that one might find in the New Testament, but so many symptoms of MS have diminished in MS patients since they were treated.
    I will never begrudge any of funds I used. My “placebo effect” was so good that I took time off from fighting for treatment and aftercare in Canada to paint two rooms in my house. In fact, I am likely in better shape than you are Colby Cosh. If I ever get to Edmonton I will do a Happy Dance on your desk. Be prepared.
    Time is being wasted by not allowing this procedure here and the Canadian/Provincial governments are wasting money ($40,000. a year for the drug I used to take) and valuable lives of those who have been categorized as having MS.
    It would be interesting to know if you are receiving a kick-back for writing such drivel. Guess we will never know that either.

    • Judy, I would love to see you do a table dance on his desk.
      Did I really say that?
      Not just time is being wasted, lives are too. Over 400 a year in Canada alone. Many very young.

    • I have wondered why these biased writers do not approach those who have had venoplasty? My guess is that they are afraid that their opinions would look like trash.

  19. You definitely did not speak to the right people. Your article stinks and is untrue!
    Did dr Freedman help you write this article? It looks like he brainwashed you too!
    Yes the angio works in people and differently in some people, I did it too, I felt too, I had energy and my life back………..duhh!
    How could you write the following:
    “On the other hand, the doctor is not likely to miss any meals because he messed up. A Canadian MS patient who forked over for repeated unnecessary angioplasties might.”
    Unnecessary angioplasties WT. are you talking about! I
    f you had cancer would you try chimo or radiation??
    Is that unnecessary too??
    You don’t have a label of MS and you don’t know what it is like, we have hope and must not loose it.
    If you get sick mr Crosby maybe you too will change your mind and have hope!

  20. What a piece of trash. First of all, what Dr. Zamboni proposed is not complex. It is quite elementary. I’m pretty sure it could be explained and understood by many elementary school children. The venous connection to MS is certainly not new, but has a very long history. Are you so naive, that you believe these very fundamental characteristics of venous anomalies, are just an extraordinary co-incidences? Come now; do some research on the findings of Charot, Putnam, etc. etc. and think. You are obviously not aware that MS afflicts children and teenagers as well as adults. It is the autoimmune theory to MS that has never been proven. Despite this fact, all the current therapies for MS are based on this redundant theory. Are you aware that more than just a few Canadian physicians, who themselves are victims of MS, left this country to have CCSVI treatment. They are too fearful for their licenses to say anything though. Dr. Campalani, a heart surgeon from Northern Ireland, who himself had CCSVI treatment, stated that, ” to forbid it, to take it away, not to offer it to the patient is a capital sin.” And if you which to talk money; the Canadian taxpayers are paying millions of dollars to support very greedy drug companies, MS research neurologists, and MS Society presidents etc., and to make them very happy. All of this for medications fabricated due to unproven theory. Wake up.

  21. Here we go again! Another ignorant opinion piece bashing the ONLY treatment that has EVER actually helped alleviate many symptoms attributed to MS. It makes me sick that this gets seen by people who think it’s the truth. If this guy thinks money is more important than health, I’m sure there’s a job for him in Harper’s government!

    Progressive forms of MS have no treatments “approved” so instead of just waiting to become increasingly disabled until I die, I spent $7,000 for a venoplasty to relieve a 50% blockage of my azygos vein and 90% blockages of both jugulars. Canada didn’t want my money so I happily gave it to the U.S.–best value for money I ever got!

    Walk a mile in my shoes
    http://www.youtube.com/watch?v=yrH9GH0N4ck

    • You and many do and will disagree with Mr Cosh but as soon as you start bashing our Prime Minister you lose your audience.

  22. This is nonsense. My 15 year old daughter was liberated and is now symptom free. No more fatigue, headaches, numbness, weakness, blurred vision, poor balance, the list goes on. She was liberated only 5 months after diagnosed with RRMS. Her vision went from 175 down to 20. She had to get new glasses. Its documented by her optometrist. How do you explain that? These improvements were all immediate and its a month later and she has only improved. Shes eating again and gained weight back she had lost from starving. No more meds or injections. Those who only slame CCSVI as junk science should be ashamed of them selves. My daughters life is for more important than any amount of money you throw in my face. The surgery was no more expensive than any other procedure thats done. Its not rocket science when you are there and see the clinic and staff, to know its clean and professional.These are not quakes. I spoke to many who had great success. The risk are less than 1%. Can you say every cancer patient survives chemo and radiation? Or every heart patient survives open heart surgery? No, of coarse not.I know many more who died from cancer and heart disease with treatment than I do from CCSVI.

    Unless you have MS or someone you love has MS, its easy to say its a hoax. Obviously you never did proper research. God help the souls of nay sayers when one day CCSVI is proven beyond a shadow of a doubt to be linked to MS!!

    • Hi, I have a son diagnosed at the age of 14. He is now 17 and only had the one relapse at 14. But MRI’s were what brought about the diagnosis. We live in Florida and go to USF for checkups.
      Would like to talk to you about your daughters experience if you wouldn’t mind? I am just a concerned parent trying to get all the info I can. I am on TIMS daily.
      My E-mail is jbfmsfd@aol.com

      • email me any time. I dont mind at all. We live in New Brunswick, Canada. We went to California with Dr. Arata for CCSVI. It was a hard choice but we are glad we did. :)

  23. Mr. Cosh has written before and I have no doubt he has ONLY consulted with those few angry MS neuros in Canada. It is so lame, disgusting and just a blatant biased view. No wonder people in Canada and other countries like the UK are having so many issues trying to survive and wanting simple relief. The misinformation being interpreted by those who want to see this cutting edge treatment fail. The negative reports are those from who do not follow protocol and trash the findings. Of course nay Sayers will do whatever it takes so not to upset the pharma industry, the MS Societies own best interests. This is suppose to be about advocating for those who have vascular issues. Leave MS out of this. How many ways do we have to tell these biased writers as Mr. Cosh to listen to the proper people and report the true facts. Since when do MS neurologists know about vascular issues. Ask them that. They even refuse to look at reports and DVDs of the procedure. Why is that? Over 30,000 treated can’t be wrong.

    • Shirley, according to my neuro, and I quote, “blood flow is not important”. Duh…gimme a break.

      • Of course they would say that Gerald. They have nothing else to say of worth!

  24. What a piece of trash. Colby Cosh has no idea what has been liberated. What a waste of time this article is. I have never had any “MS” treatment work as well as the liberation treatment and would have no problem doing so again.

  25. Money better spent than on ethanol subsidies and mandates in any case.

  26. After examining this study cited by Cosh, things are not as they appear. This misleading story trumpets a study involving Neurologist Dr. Florian Doepp and his team. CCSVI advocates recognize Doepp’s name as someone who set out to trash Zamboni’s findings soon after Zamboni’s initial W5 story. A quality journalist would question the motives of this Doepp team of researchers. That would be an interesting and credible story. Many holes in your opinion piece, Mr. Cosh…Many holes.

    • Thank you for pointing this out Amy. What ever happened to proper journalist ethics? At one time they were to research, check their sources and be unbiased.

  27. hmmm well if this cretin lived in our bodies for just one week it would be a whole different story…walk a mile in our shoes before you judge!!!

    • HEAR HEAR! If only the doctors and their staff could too!

  28. I had angioplasty in NY 2 1/2 years ago and I am stronger than I have ever been in my whole life! I am working at a car dealership unloading car and truck parts sometimes over 50 pounds up 3 flights of stairs! If I had not gone for this treatment I know I would be using a walker or a wheelchair by now, my vision would be gone as it almost was before I left and I would be highly dependant on my family to live each day! Now I am helping other get their lives back fundraising with the CCSVI Foundation and speaking out on behalf of those that can’t. Cosh, there are THOUSANDS of us that have had fantastic improvements and consider it money well spent….You need to get your facts straight and stop bashing those that are trying to get a better life for themselves. I can only wish for you that some ugly disease dosen’t suddenly rear it’s ugly head leaving you lifeless, Hopeless and in the hands of the Big Pharma! You can review my updates on YOUTUBE – Crystal’s LIBERATION!!!! and I was liberated BEYOND!

  29. You forgot to do an intensive scrutinisation on MS drugs and whos wallets are big via many MS dangerous drugs via profits shares and commissions on.The MS drugs if you researched is the main area where too so much MONEY is being made out of GREED and Corruptions , many people are involved in and MS charitys dishing out legal drugs that have killed hundreds of thousands.CCSVI is NOT dangerous and has helped over 40,000 worldwide. PLEASE do your research properly. Whos paid you to write this story ?

  30. Whoever has made trillions via the MS drugs has obviously paid this man to write this

  31. Well it is a shame that the author of this article didn’t talk to Anne Kingston before he wrote this article. Her previous pieces published in Macleans were based on the science of CCSVI and her attendance at several conferences on the subject.
    Dr Zamboni had success with this procedure because he studied the ultrasounds and the veins and vein valves of his patients. He did the right thing and told the world about this – I know he can sleep soundly in his bed knowing the benefit he has brought to many.
    We, the MS community that have been helped by treatment for CCSVI, are getting increasingly frustrated with articles such as this that unfortunately are read by the general public who then believe what they are reading.
    I have yet to hear from anyone who feels that they have wasted their money on this treatment, on the contrary many of us are now 3 years post procedure and doing very well.
    Upper cervical chiropractic has also helped many. Drugs do not help most people with MS – just read the study out of the UK a couple of years ago on the cost effectiveness of prescribing DMD’s. This CCSVI procedure, diet, excercise and other holistic therapies are of far more benefit but do not help pharmaceutical companies, or their shareholders, to line their pockets.
    Next time you wish to write an article like this I suggest you do your homework first.

  32. Can I just say — the word is “DRIVEL”; not “dribble”, people. Also, you can’t argue with people who spent a lot of money.

    • The way this guy spouts, “dribble” is actually very appropriate!

    • Drivel or Dribble – it’s all excrement, just from different ends of the body.

    • And you can’t argue with stupid

  33. My MS colleagues seem to have covered the ignorant and
    unresearched article above so I want to deal with this one comment-
    “, it is all looking like money down the drain.”

    Money down the drain is the donors money spent yearly on the MS Society.
    Have a look at their financial papers and you will find that most
    donor’s money goes towards big salaries for the CEO and top
    management and top of the line office equipment and don’t forget the
    advertising to keep the number of well meaning and misinformed donors
    increasing.
    Money down the drain is working for decades on an
    unproven theory called autoimmune. ‘Decades’ and ‘unproven’ are the
    definitive words there by the way.
    Money down the drain is
    government (That’s taxpayer’s money) backing of ‘research that starts
    in the middle – like drug research to stop relapses when there is not
    yet a known cause. (Study MS relapses – they are unpredictable and
    vary from decades apart to days apart).
    Money down the drain
    is coughing up amounts like $1700 to $4000 per month for these
    useless drugs.
    Money down the drain is paying foolish young men to write this
    drivel. But I see that you are “Canada’s most
    talented young non-fiction writer” well at least according
    to your own blog. And this article surely fits in the ‘fiction’
    category if ever one did. Best to be careful there – the
    Psychiatrists have been having a field day making up new and
    wonderful mental conditions and I am sure that they will find one for
    bloated egos soon.
    Off to share your blog with my fellow Msers/CCSVIers. They deserve
    a good laugh, don’t you think??

    • HEAR HEAR!

  34. I am a MS warrior and I had venoplasty 3 years ago and still benefit from it. It cleared up the cog fog and I have warm hands and feet. I no longer have an earache that I had for years. I no longer suffer the painful calf cramps or the acid reflux that was very painful and I even got it from water, There are many more invisible positives that I benefited from a procedure that is done everyday in this country but not for people that have the scarlet letters of MS. I would do it again in a heart beat. I feel so bad for Dr. Zamboni who did it out of love for his wife. The autoimmune theroy has never been proven. I do believe a vascular componet is part of it. I had more success from venoplasty than I ever had from the drugs that are being pushed by big pharma. They are the ones who are lining their pockets and the pockets of neuros. I challenge the MS society as well as the MS clinics to show proof that MS is an autoimmune disease

  35. The original CRAB drugs fell into the placebo range for effectiveness

    • and give permanent damage, the tissue where I used to inject is eatten away to the bone!

  36. “I feel strongly about CCSVI treatment which I had 2 and a half years ago (yesterday). I had had PPMS (which for those of you who don’t know, is the worst form of MS as diagnosed by a regular neurologist), I had been in a wheelchair for 14 years with no hope of getting out of it fast (or slow). There are no drugs for PPMS and for this I am grateful.
    The CCSVI procedure removed all my symptoms bar the actual walking which had already been zapped by MS. EVERYTHING else is back to pre-MS days, I feel so well, and intense physiotherapy is taking care of the walking which still deludes me.

    The only “money down the drain” is in the so-called MS drugs. How can they heal us when they don’t even know what MS is? Prineas got it pretty accurate but the powers that be refuse to listen as it doesn’t make money.

    Vested interest sells stories such as this.
    I have a vested interest, it is called my life. CCSVI has taken me back 17 years to pre-MS days. Thank you Paolo Zamboni.”

  37. For Janet Orchard
    I
    tried to post but couldn’t, If a¡nyone can on my behalf: “I feel
    strongly about CCSVI treatment which I had 2 and a half years ago
    (yesterday). I had had PPMS (which for those of you who don’t know, is
    the worst form of MS as diagnosed by a regular
    neurologist), I had been in a wheelchair for 14 years with no hope of
    getting out of it fast (or slow). There are no drugs for PPMS and for
    this I am grateful.
    The
    CCSVI procedure removed all my symptoms bar the actual walking which
    had already been zapped by MS. EVERYTHING else is back to pre-MS days, I
    feel so well, and intense physiotherapy is taking care of the walking
    which still deludes me.

    The
    only “money down the drain” is in the so-called MS drugs. How can they
    heal us when they don’t even know what MS is? Prineas got it pretty
    accurate but the powers that be refuse to listen as it doesn’t make
    money.

    Vested interest sells stories such as this.
    I have a vested interest, it is called my life. CCSVI has taken me back 17 years to pre-MS days. Thank you Paolo Zamboni.”

  38. This is really a shame what Mr. Cosh has reported. I am trying to understand his motive for this very selective and intentional report of only referencing the negative Neurology papers on CCSVI without even an attempt to understand the political and self serving motives of such nonsense. His lack of knowledge and poor investigating skills are very obvious. For those who are educated in the CCSVI timelines, studies and and ongoing controversy, it is not surprising to us that all the negative studies are presented by MS Neuro’s that are receiving lucrative compensation from the Pharmaceutical companies and have self serving interests to keep MS a drug treatment only disease. Of course the educated also know that by keeping the status quo this is helping so many EXCEPT the PERSON WHO HAS MS. I am hopeful that MR. Cosh will now explore the other side of the equation and research the studies from the experts who actually understand the vascular component of not only MS but many other Neurological diseases and I sincerely hope this disease never touches him or his family as I fear he will not be able to live with himself on this very cruel and unfair public media release. It is never to late to do the right thing…

  39. This comment was deleted.

    • At least CCSVI is still in the media! Thanks to all who write about it. We just have to make sure it is good journalism and not garbage.

  40. Colby, you are a brave man! You have landed yourself knee deep in the controversy and obviously by reporting some unpopular study results, you are on the WRONG SIDE. Some how your colleague, Anne Kingston always ends up on the RIGHT side. Apparently, there seems to be some self-reported benefits to liberation for some MS patients. Obviously not all MS patients have CCSVI and liberation is clearly not a cure. However, perhaps the question should be whether the benefits of liberation outweigh the risks in those patients with MS who have CCSVI as many claim they do. If that is the case, then it should be funded as a compassionate treatment like any pain-reducing surgery would be.

    • The reason Anne Kingston ended up on the Right side was because she took the time to attend conferences on CCSVI by Interventional Radiologists. Who is Colby and how much research has he done?

      • Yes, I understand that you guys are very frustrated. However, try not to shoot the messenger of negative study results.

        • One has to understand that many of the “major” negative studies have been, first, conducted by neurologists and, second, have been soundly discredited – the COSMO study for example, has been vilified by participating researchers for discarding data that did not discredit CCSVI.
          This issue has never been about science, it has always been about money and the bottom line is that the neurologists know that CCSVI is a gravy train ender. Consequently, we will demand that the messenger of negative studies do some research and look at the positive studies. CCSVI exists, approximately 40,000 have been treated worldwide and there are improvements for 2/3 of those treated.
          The MS neuros can do all the studies they want, we know what the results will be and we have never been wrong in our predictions; we will continue to seek treatment for a vascular condition and, for other commenters, we would gladly pay to have the treatment in Canada.

          • Okay but wait a minute. These two studies that Colby is talking about are in VASCULAR Journals. It is highly unlikely therefore that the studies were done by neurologists. Rather it appears the studies were done by vascular specialists. Vascular specialists are the ones who have championed CCSVI. I think perhaps before you over-react and call Colby all kinds of awful names, you need to examine the actual studies.

  41. Very sad to see this in McLean’s really disappointing and journalism at it’s worst. Get the real facts at ccsvi.org. My personal blog has more references and links to the truth than this supposed author has shared. Successfully diagnosed and treated for CCSVI on Jan. 2011 with excellent results. MRI before and after and a physician’s & neurological checkup as well as an optimologist all to prove I have significant changes in my brain and body. Print this article and line a bird cage with it.

  42. MS Pharma-Biz has always been, is now, and always will be about the money.

    CCSVI treatment is about people.

    Your article was poorly researched. Shame on you, Mr Cosh.

  43. If someone like Mr. Cosh feels so strongly against a person with MS spending money on trying to regain some quality of life then I can’t imagine how he must feel about someone paying for cosmetic surgery because of vanity! How many people whom have actually had the procedure has he spoken to and how many have regrets? I know of dozens who have had the treatment and NONE have any financial regrets–some were hoping for greater improvements but, I repeat, NONE had any regrets about the money.

  44. Kudos Colby for writing a solid article that’s going to net you a lot of hate mail. A lot of people want CCSVI therapy to work, but the evidence isn’t stacking up. Anecdotes from a few individuals don’t put down the genuine studies that are showing it doesn’t benefit the vast majority of sufferers. Hopefully the research money moves towards more promising treatments that don’t rely on the placebo effect.

    • Adam. Do you have MS?? CCSVI?? Lyme Disease?? Cpn?? (These last two are real diseases that your friends, the MS neuros have misdiagnosed and THOSE numbers are growing). Exactly what evidence is not stacking up?? You mean the fixed trials (proven fixed – do your homework) paid for by Big Pharma (who keep losing court battles)?? Have you ever actually talked to someone who has had the procedure and claims to be doing well? And they are lairs? but your neuro friends who do not know anything about MS except the same clap trap they have been teaching for the past 60 years (paid for by Big Pharma BTW) that is based on an unproven and illogical theory are telling the truth?? Call me. I have a piece of great land in the middle of the Everglades I know you will want to invest in.

      • Is your only retort to any objections “BIG PHARMA DID IT?” If CCSVI was viable I there would be numerous companies who are more than willing to capitalize on it – but they don’t because they do not wish to commit to something that has extremely low chances of success. And I ask you, have you actually talked to someone who has had the procedure and has then realized that they have spent thousands of dollars to no avail? No doubt those are the individuals that are too embarrassed to post about their failure. Instead, the responses are spammed with individuals responding to a facebook call of “Mr. Cosh is a big meanie!”

        • I never thought anything could be worse than MS but Demos, you have proved me wrong and I will forevermore be grateful that I am not brain dead like you apparently are.

          • Fair enough, if you would rather have MS than to be able to reason, examine data, and draw conclusions from it – then kudos to you.

        • Demos, apparently, you don’t understand that there isn’t big money to be made by a minimally-invasive procedure that is already a standard of care for many medical conditions, even in Canada. One of the big problems is that the Colleges of Physicians have threatened–yes, this has been documented–the Interventional Radiologists in Canada not to perform this simple procedure on people with MS. One of the reasons actually given was that if “everybody with MS was given this procedure, then there would be nobody left for clinical trials”–which means NO MORE GUINEA PIGS FOR PHARMACEUTICAL POISONS! After 6 people with MS were treated in Ontario, and 2 in BC, neurologists and the Colleges used their “powers” to STOP it. Canada should be so proud–they’ve pushed people with MS to search for relief in other countries–and it was the BEST DECISION I EVER MADE!

          • Please, share this document. I, and many others would very much like to see it.

          • It would appear the newspaper articles are no longer available on the internet–this was the link for the article: http://www.timescolonist.com/health/fierce+attacks+therapy/3572370/story.html#ixzz10VfxUlPJ

            I wish I hadn’t been so naive myself to think these stories wouldn’t be removed but I guess I’m not totally stupid since I did keep a copy of some of the article that stated:

            Dr. Richard Crow, chief medical officer for the Vancouver Island Health Authority admitted venoplasty is sometimes done in patients who have obstructions in their jugular veins or in veins in their limbs, to relieve pain and swelling. But he said the treatment would no longer be used on MS patients as it is “an atypical procedure which has not yet been approved.

            It has been said by Dr. Brian Weinerman, executive director for diagnostics at the Vancouver Island Health Authority in Victoria that “clinical trials may have trouble getting done if everybody could just get the procedure because why would you go to a clinical trial if you could just get it done.

            I did keep a copy of a radio interview with Dr. Weinerman that has also “disappeared”. Unfortunately, I do not know how to get this audio recording to you as it does not have a link but this is some of the transcription.”

            “the particular physician was actually asked to do the procedure by another physician in Vancouver and um the physician did make it clear that sure he would try as long as there were other symptoms in the individual for which they usually do the procedure–that is swelling or those types of things–and as you mentioned earlier the venoplasty that is done is not a…an…that is done for certain indications and the fact that the patients had MS you wouldn’t necessarily want to um…uh…stop them from uh…having this procedure done if they’re having symptoms from another type of illness. Having said that, he (the doctor who performed the venoplasties) does feel he was somewhat naive in thinking that that was really the reason for the procedures and as you know we’ve only done two and we’re gonna stop doing them unless they are under the umbrella of a clinical trial, an investigational trial.”

        • In all fairness, I can say yes. I’ve talked to several people who have not faired well with the treatment…..but I’ve spoken with a plethora of people who did better….from some improvement to vast improvement. A friend of mine left a wheelchair and got her licence back after 20 years. Another one left a nursing home and lives independently. Should I tell them to get back into their wheelchairs. It’s been over 2 years for both of them….when does placebo stop being a placebo?

          With your line of reasoning we should stop all chemotherapy on cancer patients because some have died.

          Mr. Cosh has the right to publish what he wants, but we have the right to respond and correct him.

          • You are making assumptions here. I did not, at any time, claim that any results were because of a “placebo effect.” I am merely pointing out that there are always 2+ sides to a debate, and that the strongest claims are those that are built on evidence rather than question marks, and that acknowledge the “other” side rather than burning the straw man.

            Again, the rates of survival for cancer have increased drastically over the last few years – due to advances in certain therapies. This in itself is a testament to the benefits of chemotherapy. Now if there was hard evidence as to the benefits of CCSVI, instead of individual claims, then there wouldn’t be this debate. CCSVI would be an accepted treatment for MS, as chemo is for cancer.

          • Apologies for the “assumptions”. I think that as MS patients we are badgered and belittled so much by our neurologists, that emotional responses and assumptions have become commonplace….both for patients and doctors.

            OK, quick question: How will the evidence ever be brought to light if all of the “evidence” is quashed. This report by an American neurologist, Dr. David Hubbard, shows that there are actually clinical improvements after CCSVI treatment. http://www.hubbardfoundation.org/sites/default/files/JVIR2012_Hubbard.pdf

            Two Quebec neurologists have made claims that “out of the hundreds of MS patients who have had this treatment, NOT A SINGLE ONE HAS IMPROVED”. Strange that a neurologist would say that, and that Dr. Danielle Robitaille, Head of Hematology at the Montreal Heart Institute (who follows up on about 150 MS patients post CCSVI treatment) has noticed these improvements. See this subtitled interview from French CBC. http://www.youtube.com/watch?v=TnaGR-A9108

            Strange that I’ve personally spoken to several family doctors in Nova Scotia who have noticed improvements in their MS patients. Had all of this information been collected and compiled, I don’t think we would be having these arguments now. We would know already for whom the procedure worked, and for whom it didn’t.

            Also, there are various levels of subjectivity – both in the patient’s perception and in the neurologist’s perception when following up on MS/CCSVI patients. I saw that in my own situation.

            If neurologists continue to put down the individual claims, than no proof of benefit will ever come to light.

            I would like the neurologists to name the numbers of people who have experienced Quality of Life improvements because of the DMDs (Disease Modifying Drugs). I can tell you now….the answer is simple…..NONE. That is the nature of the beast…..MS is a life-long disease that continues to grow progressively worse for some, and never worsens for others. Why are we still barking down the road of autoimmunity, when EVERY MS SOCIETY WORLDWIDE freely admits that they don’t know the origin of this disease?

            Sorry to rant, and thank you for correcting me on the “assumptions” I made.

            Cheers to you…..

    • With that line of reasoning, we should abandon the faulty, fairy-tale autoimmune theory and reimburse drug companies and governments the billions they have paid for MS meds that DO NOT PREVENT PROGRESSION. http://jama.jamanetwork.com/article.aspx?articleid=1217239

      I don’t send hate mail, but I am allowed to disagree.

      How do you respond to the fact that more than 20 Canadian physicians living with MS have been personally treated for CCSVI?

      As for placebo, NONE OF THE MS MEDS work beyond the placebo effect. Dr. David Hubbard, neurologist has stated this on many occasions. Yet we continue to fund them, and churn out trials that cause more deaths every year than a simple procedure that can restore some measure of quality of life.

  45. How dare you be so condescending! Journalism is supposed to be factual and unbiased. Your article is neither. I have had this procedure and it is the only thing that has helped me in my 22 year battle with MS. You sound exactly like the shameful ,greedy,egocentric neurologists. I though Macleans was classier than to print such drivel. You have no clue and until you check your facts and report accurately you are a third rate writer. Just one example ,You started by saying ” hundreds, perhaps thousands” you don’t even have the intellect to check, is inaccurate. Over 40000 have had the procedure done. Shame on you.

    • This comment was deleted.

      • HA ha ha!!! Sorry but this literally made me laugh out loud! ;)

  46. Time to post some contradicting studies for this fellow to read

  47. It never ceases to amaze me that people who call themselves
    writers or journalists can take a critical stand , put it in print and expect
    everyone who reads it to believe it. Where is the other side of this issue,
    other than reader reaction? Perhaps you should have sought out a few people who
    know from first hand experience what CSVI is and which treatments work. Diagnosed
    with MS 20 years ago I sailed right along into what neurologists refer to as
    Secondary Progressive. My home was full of thousands of dollars worth of assistive
    equipment. Have you ever actually known anyone with progressive disabling MS?
    The quality of life for us is anything but enviable. Three years ago I had the “Liberation
    procedure”. I am now asymptomatic for MS. Since I have lived in the same place since my
    diagnosis my recovery has caused quite a stir. I have never seen nor heard
    about anyone taking disease modifying drugs claim they have recovered from MS. Now
    THAT is a story that warrants investigation.

  48. I took the time and made the effort to look up Colby’s email address and track down his phone number. I called and spoke to him. He was very cordial and explained that his article is largely based on information from neurovascular specialists. I let him know I strongly disagree with his article and proceeded to explain why and to whom I am going for CCSVI treatment next week. In the end he had to agree that I seemed to have made an educated and intelligent decision and is hoping it does work for me. He also asked that I keep in touch. He still feels that most of the research seems to be disproving CCSVI both as a valid treatment and as perhaps even as a condition. We spoke for nearly 45 minutes and if I didn’t change his mind, I hope I at least gave him food for thought.

    • Sure would have been nice if he had agreed to see you before you go tomorrow, Denise. I had my procedure July 2010, by Dr. Gary Siskin, almost 3 years now. I don’t regret one penny that I spent.

  49. This comment was deleted.

    • I concur! ;)

  50. There is all the anecdotal evidence that angioblasty has helped people with MS and on the other hand there is the research that shows that CCSVI is not more frequent in people with MS than in people without. I guess only a study that tests the intervention can shed light on this contradiction…

    • or truth serum and I know hundreds of MSers/CCSVIers who would love to see That happen.

  51. Well, over the last ten years I’ve used a quarter MILLION dollars worth of drugs that have done nothing to stop my disease progression. That is why I jumped at the chance to be in the PREMiSe trial. And even though they didn’t see the results they expected, I still will consider trying the procedure (I was in the sham group).

  52. It is usually a good idea to actually do research on a topic when attempting to write about something. Yes I have MS and I would benefit with the treatment, unfortunately it is not available in our own country. By the way I also work in health care so I do read reports and studie that come available to enlighten me and others that care to bother

  53. … And investigations will continue, despite the lack of evidence showing that it works, simply because so many people want it to work.

    • I wanted my gallbladder surgery to work but when the gallbladder was removed they missed removing some of the gallstones so I had to go back for another procedure.

      As for angioplasty for CCSVI, I have all the evidence I need to prove it works–I can now walk several hundred metres without a mobility aid when before treatment I had to hold onto the walls to get around my apartment–my “placebo has now lasted more than 25 months!

      Walk a mile in my shoes

      http://www.youtube.com/watch?v=yrH9GH0N4ck

  54. “Freedom of Speech” is a great thing, but it has it’s disadvantages, it is very wrong, when false statements are made, and put across as fact. There is definite value to treating CCSVI for improvement in symptoms. If an articles is written like this one, it should contain more real facts. Not sure why the write up Colby, you must have your reason ?

  55. “The April issue of the Journal of Vascular and Interventional Radiology, for example, contains a report of a Texas study of 276 MS patients and 70 healthy controls: ultrasounds of their necks produced “findings consistent with CCSVI” in four per cent of the MS group—and in seven per cent of the non-MS group. Examples of results like this could be compounded ad nauseam: the Texas paper is not even the only negative CCSVI-Zamboni result in that issue of that journal.” Well, you could list just as many studies which found a positive correlation betwen MS and CCSVI. I’d really like to know who did this study. Again and again, people publishing negative studies have big ties to big pharma and don’t know anything about CCSVI. They may be leaders in ultrasound, but ultrasound is not the gold standard actually. PLUS. You may know about other vascular issues, but CCSVI is different. You need training to recognize it–not just book knowledge. Ever seen someone with a missing jugular vein. It happens in CCSVI. Who could NOT see that? This issue is complicated and not to be judged by novices. By the way, I tried the lastest MS drugs. No ‘placebo effect’ there, though I expected good things. But, GREAT placebo effect which has been going on for years after being treated for CCSVI, if improved eyesight is a placebo effect. Please do not call for the end of the only hope we have had for MS. People keep going for treatment because it works. Quit spending billions on immune modulating MS drugs, which have killed so many already. The British government concluded that they stopped relapses but had no long term effect on the progression of disability. So if the immune theory must rather be questioned.

  56. Good for you Colby. You found a few articles which seem to disprove the CCSVI theory. For a more complete list of 304 more, go to CCSVI. org http://www.ccsvi.org/index.php/component/search/index.php?option=com_search&task=search There you will find many many studies that support the theory. Please know that people’s lives with MS hang on the balance and CCSVI has been the only thing to give them real hope and not hype. Please be more thorough in your research as Ann Livingston has. Journalism influences public opinion, so you have a duty to be as diligent as possible in search of the truth. By the way. I tried the latest drugs and had no placebo effect, though I certainly was expecting something. Tried CCSVI and had great long lasting placebo effects (is it placebo if it lasts for years?). So good that I would gladly pay out more of my money to have it done.

  57. Many vascular surgeons and interventional radiologists present studies, results with important numbers and images alone are worth a thousand words, and they all agree that CCSVI exists. But why then and still deny its existence?

    CCSVI, as pathology or better as vascular anomalies has always been associated with multiple sclerosis, a disease of neurological expertise that no one has ever wanted to discredit or ignore.

    As part of this terrible disease, which affects many young people who could be our children given the age (of us doctors), it was found in parallel with a high frequency of vascular abnormalities in vascular drainage system (ie venous) from brain and spine to the heart and lungs.

    As Vascular Surgeon, University of Milan, formed in one of the most famous and skilled italian schools with excellent professors, I’ve always been devoted to the vascular diagnostic, venous and arterial, and I take care of this since 1982, not recently.

    CCSVI came into my vascular diagnostic experience mid June 2010, initially in a mixed state of skepticism and curiosity. This condition is essential to also have the boost in wanting to understand and grow as a doctor. Deny a priori only detrimental.

    Back in 2007 I had published, together with other colleagues, a work about the unusual frequency of deep venous thrombosis in patients with multiple sclerosis, presenting the results in several occasions at international conferences. Probably the sufferers of this disease have a predisposition to venous disorders.

    At this point the curiosity and desire to understand CCSVI has become an automatic sequence of examinations in two and a half years has led me to evaluate more than 1,500 MS patients, of which just over 600 undergoing venoplasty procedures. Some results of this study were presented in october 2012 at the national congress of the Italian College of Phlebology held in Naples as part of a session dedicated to this vascular disease.

    The results I obtained from these examinations, always carried out in the absence of conflicts of interest, have led me to believe that CCSVI is a vascular abnormality present in approximately 90% of patients suffering multiple sclerosis. Not only that, I could see, by direct evidence, that a high percentage of patients could benefit from treatment with venoplasty of specific venous parts that had these abnormalities. Unfortunately, I could also see that the best results occur in patients who have a “young” disease as they have been less effective in those situations where the disease had years to do damage.

    Personally I don’t consider to be a visionary, and I think I can objectively define a “diagnostic expert” and so I really struggling to understand why the results of some studies are diametrically opposed to my and numerous other national and foreign specialists who have results similar to mine, also experts and not visionary.

    I even find it hard to understand why so little importance is given to the numerous testimonies of patients who report that they had benefited from the “hemodynamic corrections ” obtained after venoplasty. Yet these people should have more say and be heard.

    I find it hard to understand, and with me the many testimonies of the patients, why a healthy and constructive collaboration between specialists is so complicated, not to say impossible.

    Science world has always presented clashes of opinions and disagreements, but I think this time we have missed a golden opportunity. It’s a shame.

    Eventually, as is increasingly the case, will be the patients who will decide and will (or should) have the last word.

    Cure is a sacred right and everyone should be able to do where he wants, with whoever he wants and, more importantly, when he needs it.

    I personally believe that CCSVI exists and is part of a terrible disease such as multiple sclerosis, but gradually, is developing the idea that it is also present in other progressive neurological diseases. The chapter is still open, still a lot of curiosity, the patients are always too many and their quality of life isn’t sufficiently adequate.

    To my first question, “Why?” I think I’ve given a personal response and rather rich, everyone the freedom to interpret it as they see fit in accordance with the work of individuals.

    We now hope that Dr. Zamboni has recognized the equality of opportunity to complete the Brave Dreams Trial which unfortunately was delayed. The road is still long, but the “disease” can’t wait.

    Pietro Maria Bavera, MD
    Vascular Surgeon
    Pietro Maria Bavera, MD
    Vascular Surgeo

    • Thank you for this Dr. Bavera!

    • It is very enheartening to hear form someone who has treated CCSVI. I appreciate Dr Bavera for taking the time to respond to this badly researched article.

  58. Hi Mr. Cosh,

    have had the CCSVI procedure done in 2011 and I am well since then.I was wondering about this, in my view poorly researched article. The only thing that was liberated for me were my two jugular veins. At one compared to the MS drugs unbeatable price (once € 2.000,- for the treatment to € 18.000, – for MS drugs per year), with a previously foreseeable improvement of my MS symptoms.

    Do you know anything about the risk of CCSVI procedure Compared to the
    risk of Certain drugs used in MS (Tysabri, Gilenya and so on)?

    Whold they tell us now with your article, such as that I have to go once again to Frankfurt to make close my veins again. To then take drugs that do not solve the problem of MS but may exempt pharmaceutical companies from the fear that your medications become slow sellers.

  59. Mr. Cosh, please open you eyes.
    This is the acknowledgement statement (including conflict of interest and funding sources) of the Texas study:
    The study was supported by the National Multiple Sclerosis Society (RC 1019‐A‐5) with limited personnel support provided through our local Center for Clinical and Translational Sciences funded by the National Center for Research Resources (UL1 RR024148, TL1RR024147 for the T32 program; KL2 RR024149 for the K12 program). The content is solely the responsibility of the authors and does not necessarily represent the official views of the NMSS, NCRR or the NIH. None of the investigators have financial interest in the outcome of the study. ADB: Research support from the National Institutes of Health, and National MS Society. SAB: Consulting agreements or
    speaker for Bayer HealthCare, EMD Serono, Genzyme, Pfizer, Questcor, Teva Neurosciences and research or contractual support from the Clayton Foundation for Research, EMD Serono, Pfizer and Questcor. TB & KT: Nothing to declare. JJ: Research support from the National MS Society. LAK: Research or contractual support from
    the National Institute of Drug Abuse and National MS Society. AMC: Consulting agreement for Medcomp. JWL: Consulting agreements or speaking for Biogen, EMD Serono, Pfizer, Teva, and research or contractual support from the Clayton Foundation for Research, Teva, National MS Society, National Institutes of Health. FN: Consulting or
    speaker for Bayer HealthCare, Biogen Idec, EMD Serono, National MS Society, MS Association of America, Novartis, Sanofi, Teva Neurosciences, and the University of Massachusetts Medical School and research or contractual support from the National Institutes of Health, Novartis and Sanofi‐Aventis. PAN: Consulting agreement with
    Acorda and research or contractual support from the Department of Defense, National Institutes of Health, and Sanofi‐Aventis. JSW: Consulting agreements or speaking for Astellas, Bayer HealthCare, Celgene, Consortium of MS Clinics, Eli Lilly, Hoffman LaRoche, Medscape CME, Novartis, sanofi‐aventis, Serono Symposia International
    Foundation, Texas Neurological Society, Teva and Teva Neurosciences, royalties from Millipore [Chemicon International] Corporation, and research or contractual support from the Clayton Foundation for Research,
    National Institutes of Health, National MS Society and Sanofi.

  60. Did no one warn you of the backlash you would get from the pro-CCSVI persons? They are a formidable group and do not like to hear anything that may put CCSVI in the proper light. It is human nature to grasp for anything when dealing with a disease with no cure. Science takes a back seat!

    Good for you for your diligence! It is appreciated by all of those with MS (including myself) to hear a voice of reason.

    • The big problem with this OPINION piece is that due diligence was NOT done. You can choose not to have treatment for CCSVI but everybody should have the CHOICE to have angioplasty if they want it.

      My choice was to continue to deteriorate until I die or angioplasty–so glad I made the right choice–my quality of life has skyrocketed!

      Walk a mile in my shoes

      http://www.youtube.com/watch?v=yrH9GH0N4ck

    • Maryann,

      Guess you still believe the fairy tale that you heard in your neuro’s office that MS meds prevent progression…..despite the longitudinal studies that the don’t. http://jama.jamanetwork.com/article.aspx?articleid=1217239 How can a “voice or reason” continue paying for expensive drugs for a disease of unknown aetiology. I know hundreds of people now with MS, and I’ve never spoken to one who was ever cured or found improved quality of life from the drugs……especially not those in the progressive forms.

    • We are a fierce group because we are fighting for our lives and the lives of our families and our right to access a treatment for a vascular condition; whether or not it has anything to do with MS is irrelevant. Unfortunately, this issue has never been about science but about money and the groups who live off MS have a piece of a very lucrative MS Industry – $10 to $15 billion a year – and they are fighting not to lose their cash cows. The negative studies are coming from neurologists who have a lot to lose and their conflicts of interest are legendary. They have chased an unproven autoimmune theory for decades and still cannot even guess what causes MS. I was treated for CCSVI in July 2011 and I will do it again in a second if need be. I also no longer take the ineffective drugs that neurologists prescribe for MS.

  61. Who is Mr. Cosh anyways. I can chime in, like so many others having CCSVI treated that it was the best thing I ever did for myself. My quality of life is so much better without the day in, day out chronic fatigue that robbed me for so many years. My memory continues to improve even now 1.5 years after treatment. The poison I injected for 6 years did nothing to change my rate of relapse and cost me & insurance about $30k per year x 6 years = $180K, wow….. I guess the $7k spent to get treatment out of country was not so bad. Too bad no one is interested in tracking those of us who got treated so we could actually gather data. We’re not going anywhere in case MacLean’s would like to hear from those who braved this storm, instead of those sitting back and judging us.

  62. Wow! So many of my friends here who have shared in vast improvements with Liberation Procedure as I have. Mr. Cosh, I think you need to take up the offer from Denise who would like to be interviewed BEFORE her procedure this week and then again AFTER. You could very well learn something from her results. My procedure was almost 3 years ago now and I have not regretted having it or spending the money to have it. As well as saving the province of NS $20,000 a year because they paid for my meds, I am feeling and have been feeling like I’ve gotten my life back. This article definitely sounds like the same crap that we’ve been hearing from neurologists since all of this started. Which one of them paid you to do the article?

  63. And the desperate will remain gullible in the face of any evidence counter to their beliefs. Just pay for your irrational beliefs out of your own pockets, not the taxpayer’s.

    • Actually, billions have been wasted on ineffective medications. Haven’t you heard yet….MS is not autoimmune. And on top of that, interferons don’t prevent progression….despite the billions of dollars people pay for them through government-assisted programs. http://jama.jamanetwork.com/article.aspx?articleid=1217239 So if you want to save a few billion, you should be telling governments to stop paying for meds that don’t work. Futile is what they are, futile. http://www.independent.co.uk/life-style/health-and-families/health-news/ms-drug-trial-a-fiasco-ndash-and-nhs-paid-for-it-1991104.html

    • They’re gullible, because they’re desperate. And they’re all the more vulnerable when a government agrees to study something that should not have even made it to stage 2 trials. It becomes even less ‘irrational’ when people like MP Dr. Carolyn Bennet advocates for covering the cost out of political avarice. So, perhaps blame tose that fanned the flames, not the desperate whe reacted to the positive messaing…

    • That’s exactly why we are leaving this country for the treatment–Canada will use this procedure for cardiac patients, chronic renal condition patients, and many others, but discriminate against people with MS–they won’t even let us pay for it ourselves in Canada.

      I would have thought that a so-called compassionate country like Canada would be bending over backwards to give its vulnerable citizens this chance but other “powers” are just too powerful!

      My latest video: You be the judge!

      http://www.youtube.com/watch?v=dUZJRF2ukj0&feature=youtu.be

  64. “Liberation” is alive and well…just not how you think!

    The themeof “liberation” and MS are two concepts that go hand in hand ever since MS was defined in 1868. As a disease of still unknown aetiology, it is fertile ground for medical scams.

    Based on a faulty auto-immune theory known as EAE, a laboratory induced animal form of MS, the large pharmaceutical industry has been “liberating” governments and insurance
    companies of billions of dollars over the last several decades. Patients were
    experimented on with immunosuppressant and immunomodulatory therapies, that did
    not bring their “liberation”, but which liberated bank accounts of governments
    and insurance companies in hopes that it would halt progression of this
    merciless disease of young people. Knowing that these medications provided
    about 30% improvement, patients were left with the sobering reality that a
    liberating placebo pill would have provided similar relief.

    The new generation of medicines, still focused on immuno-suppression/modulation, have
    liberated hundreds, but not in the way one would think. The lives of the victims
    of these drugs were sacrificed and these people now rest in graves as nameless,
    faceless statistics. All the while, MS Societies and the large pharmaceutical
    industry worldwide continue to lead MS patients on with the promise they will
    END MS soon, thus providing eventual “liberation” to tens of thousands of
    Canadians.

    Awaiting the promised “liberation”, Dr. Zamboni, a vascular surgeon from Italy, used the word “liberation” when restoring proper blood flow to those who had drainage
    problems from the output veins of the brain. He never said that patients would
    be “liberated” from MS. Only the media used that term, at first properly, and
    then it was misconstrued as meaning people would be “liberated” from MS. In a
    perverse, bastardization of the original meaning of the word, Mr. Colby Cosh
    has once again found a way to belittle some of society’s most vulnerable in
    penning an article titled “The only thing liberated was their wallets”.

    Mr. Cosh, for your information, “desperate” and “vulnerable” are not synonymous. I am
    vulnerable because I have lived with this devastating disease since I was 24
    years old. I’m 45 now, and I was treated for CCSVI in May of 2010. Yes, my
    treatment came at great financial cost to my family. I don’t regret this
    expense; in fact I got exactly what I paid for.

    There was little scientific basis for me to take immunomodulatory or immunosuppressant
    “therapies”, since it has never been proven that MS is an auto-immune disease.
    As Dr. Freedman, one of Canada’s top neurologists has said about CCSVI and
    venous abnormalities, “Why fix something if it’s not broken?” Well, to that I
    respond, “Why modulate or suppress something if it’s not autoimmune?” Science
    led me to be treated for vascular abnormalities in May of 2010. Yes, there is
    indeed more science behind the theory of CCSVI than there is in the fairy-tale
    belief that MS is an auto-immune disorder. But of course, you fail to see this
    because you have a one-sided view of the evidence and limited your scope of
    research to what was convenient for trash-writing your article.

    I take great offense at your belittling of the MS/CCSVI community. As a close-knit
    group we have been the subjects of this type of behaviour from some of the most
    “brilliant” neurologists in Canada, and worldwide. (I guess intellectual prowess and bedside manners are not mutually inclusive).

    If you, Mr.Cosh, are diagnosed with a condition that will leave you debilitated or could
    cause great decline in your own personal health, you will be left with a choice
    – to seek treatment or to refuse it. This is a deeply personal matter. I made
    that choice in a family meeting, and I sought treatment for CCSVI. This is a
    choice that I am NOT ALLOWED to have in Canada because I have MS.

    I would like to congratulate you because your wallet and your tax dollars will continue
    to be “liberated” in the years to come as you will indirectly fund MS
    treatments through government programmes. I just hope that the next twenty
    years will allow more MS patients to be “liberated” from their MS prison than
    the last twenty in which MS researchers continued to follow the yellow-brick
    road of auto-immunity. There was no gold at the end of the road, only deep
    disappointment in clinical outcomes, and failure to prevent progression.

    As CCSVI treatment continues to receive acceptance in other nations like France and
    Australia, where it is performed in PUBLIC hospitals, two truths remain. First,
    the status quo in MS research continues to divert public opinion and as a
    result governments continue to finance the largest scam in the history of
    medicine….the unproven autoimmune theory of MS. Second, your defamation and
    disdain of MS patients shows truly how sub-human you really are.

    I suggest next time you write an article, that you chose a topic which you know something
    about.

  65. Thank you very much to the doctor from Italy for his most eloquent post and for all his compassion and dedication for people who suffer from improper drainage of de-oxygenated blood from the brain.

    Mr. Cosh, you probably spent half an hour researching CCSVI, so you shortchanged your employer, but more importantly, you actually shortchanged suffering people which is quite unethical, in my opinion. Maclean’s editors caved into the pressure put on them by their big-pharma advertisers, and you wrote the hack piece you were told to write. But now you’re reviled by millions of MSers, their caretakers, and family and friends around the world–not an enviable position. I almost feel sorry for you, but you chose your career and your employer.

    MSers face an uphill battle against the deep pockets of big pharma, heavily entrenched neurologists with their reputations based on the unproven autoimmunity theory, and MS association highly paid executives–all three groups are so intricately intertwined that the situation would be laughable if MS wasn’t such a devastating condition.

    You see, the neurologists greatly benefit financially, and otherwise, when big pharma pays the neurologists who prescribe the DMDs exhorbitant speaking fees and pays them to attend conferences held in exotic locales with all expenses, including golf fees, included. And the executives of MS associations find lucrative jobs with big pharma–in one case, the president of the NMSS was hired by a big pharma company to become its VP of North American sales. The conflicts of interest are so thick and deep that I believe even you could have found them if only you had bothered to write a balanced article rather than this uninformed and heavily biased *opinion* piece. Btw, where did you graduate from college if you don’t mind me asking?

    Did you ever learn how to properly critique a medical study? How to see through the spin used by authors of studies? Did you pass any statistics classes? If yes, you certainly aren’t using any of those skills here. Do you even understand CCSVI? An example for you: The valves of an MSer’s jugular veins are fused in the closed position, so the old, de-oxygenated blood refluxes back up into the brain and must find another way down to the heart. Sometimes collateral veins will form to help do this job, other times other existing drainage routes will be used and overtaxed. What would you do if your jugular vein valves were blocked? Whatever your decision, I bet you’d then do proper research.

    Do you know that Tysabri has caused over 300 cases of PML in MSers, and those who haven’t died are left with horrible neurological symptoms? Do you know what the awful side effects are from the DMDs? Did you do any research at all? The economics of the DMDs are staggering. Biogen made over $8 BILLION from their DMD sales last year. For the life of me, I don’t understand why the insurance companies are going along with this. unless there are greed-driven executives with hidden conflicts of interest. pure, evil greed, what explains this crazy, backward, upside-down, and inside-out state of affairs?

  66. A remark noted by Chris Alkenbrack…and I agree “Mr. Cosh has the right to publish what he wants (well even if it is incorrect), but those of us who live and breathe MS every single day….have the RIGHT to RESPOND and CORRECT him”. That sums it up pretty much. Well said Chris! BUT I also think patients with MS or any other diseases like Cancer, Parkinsons, Heart disease, etc, should have the RIGHT to make the choice on whatever treatment works best for them based on correct & accurate facts and information given to them regarding a treatment.

  67. I was treated in Bulgaria, October 2010. Was walking with a cane 100% of my days before I got treated, 1/5 of my day after Treatment. However, I was back to needing my cane all day, every day – 10 days after treatment. I sufferred a MS attack 25 days after treatment, followed by an attack roughly every 3 months after. I tried. I went. I’ll try again.

    • thank you for sharing honestly and truthfully Michelle!

    • Yes thanks for sharing Michelle!

  68. Macleans have been open minded and even handed about CCSVI until today… I am so disappointed in this article. There is ample historical evidence that MS lesions are located around a vein and that in simple terms means that something is not right with the circulation in the brain. Here is recent evidence of this, researchers found that blood circulation is slower in people with MS:
    http://www.ncbi.nlm.nih.gov/pubmed/22357894

    It is about time that the wellbeing of people with MS was taken more seriously than the money the pharmaceutical companies make out of fairly useless and quite simply risky drugs.

  69. With no accurate research done on facts and information on this subject = no valid opinion…. that holds anyway in this case of Colby Cosh. You can’t form a valid opinion on a subject you lack knowledge or education on …..2 1/2 years later and I am so glad I had it done and did not go broke getting it done either…. only positive results and a team of Dr’s/staff who answer any medical questions or concerns I have in less than 24 hrs. As a result I have not had to take any medications for my MS in over 2 1/2 years. Maybe not everyone benefits from treatments that come along but you are hardly in any position to write on this subject. Maybe you should consider writing attack campaign ads for political parties instead?

  70. hey Mr. Cosh

    have you read the research connected to CCSVI? http://ccsvi.org/
    have you talked to MS patients who feels better? there are many ten thousands out there
    have you talked to doctors doing the CCSVI procedure?

    how do you plan to spend your 30 pieces of silver?

    ccsvi.blog.hu

  71. This procedure was done 6 to 7 times in Canada on MS patients until the Government stopped it. How many people have died of PML or Cancer which has been linked to DMD drugs. My husband has MS and CCSVI and was treated twice I know that this is not a cure but the drugs made him feel worse. Its hilarious in 5 years these so called neurologist can’t even tell him the type of MS is has? We will fight for better quality of life anytime. No DMD can even come close to making this claim.

    Until you live in a life that has MS as a part of it whether you have it or a spouse, child or other loved one you will never understand what it means to fight and you have no right to critise those who fight for their lives.

    What this journalist is doing is ultimately calling sick people stupid. WOW can you believe it. I don’t see his opinion on the drugs. Or has he come up with a CURE we don’t know about.

  72. The April issue of the Journal of Vascular and Interventional Radiology, for example, contains a report of a Texas study of 276 MS patients and 70 healthy controls: ultrasounds of their necks produced “findings consistent with CCSVI” in four per cent of the MS group—and in seven per cent of the non-MS group. Examples of results like this could be compounded ad nauseam: the Texas paper is not even the only negative CCSVI-Zamboni result in that issue of that journal.

    This article is not an opinion piece. This quotation is not the author’s opinion. It is a statement of fact (not an expression of opinion) in a recognized medical journal. If you had the procedure, and your health improved, fantastic. I am very happy for you. The subsequent research shows that there is no valid medical explanation for why some patients experienced improvement. That is a fact. It is not just the author’s opinion.

  73. Varied results, true but that is not a reason to dismiss the theory that’s a reason for further research. Some results are amazing you just can’t dismiss that. On another note your ignorance is astounding in not doing your research beforehand on Zamboni’s use of the term liberation!

  74. Perhaps Mr. Cosh you would have benefitted by reading Anne Kingston’s well-researched articles on CCSVI and MS over the past few years, or even by contacting the people she referred to in her articles! Mr. Cosh, for your next related article I am sure there would be many volunteers that would share their stories …if you would just ask. This treatment is not a cure for MS – for some it greatly improves their quality of life and it should be THEIR CHOICE!

  75. Wow an entire comment section filled with anger and placebo effect. Cosh’s article is excellent and well-researched. ‘Liberation therapy’ has probably gotten people killed. MS is an autoimmune dysfunction how the hell was improved circulation supposed to fix that?

    • Please provide your evidence that MS is autoimmune–that THEORY has NEVER been proven even though the neurologists and pharmaceutical companies want people to believe it.

  76. What are this Colboy fellow’s credentials other than a clear intoxication with the exuberance of his own verbosity…”The authors go point by point through Zamboni’s proposed criteria,
    showing how he repeatedly misinterpreted earlier literature on vein
    behaviour and confused abnormal blood flow events with harmless typical
    ones….” WHAT AUTHORS? why is this so outspoken personage who is clearly NOT a medically accredited individual incapable of specifying the Doctors and clearly he is IGNORANT of all the procedures that have been done… Like in the UK and BTW the entire Kuwaiti MS community for example,.. Why has he not( to my knowledge) been remotely intrested in the FATAL side-effects of TYSABRI and the unpleasant non fatal but extremely usuccessful alternative offerings by the Pharmaceutical companies. DId this jourbnalist coh why am I even wasting my energy writing about this trouble-maker who I suspect has not written his article for free???
    Please have a look at http://www.vital-now.org Mr Colby you could pick up some knowledge before you open your … laptop case

  77. I just had my CCSVi treatment on May 1; the improvements were IMMEDIATE and many I noticed while the procedure was being done – I asked if someone had turned on another light because the room got brighter and I started crying on the table because the headache I have had for over thirty years ‘dissolved’. See For yourself…
    Here is me before: http://www.youtube.com/watch?v=XVsPtn4wtjc
    Here is me the next day: http://www.youtube.com/watch?v=gdB0E8qw8mE
    Here is me just 5 days after treatment in 30C temperatures: http://www.youtube.com/watch?v=zHF3C4PV1cI and http://www.youtube.com/watch?v=cm7x52a6d2c
    Here is me a few days after that: http://www.youtube.com/watch?v=Zp8I0l0W1CU
    I was at the point I was ready to buy a wheelchair before I was treated, now less than a week and a half after being treated I’m ready to buy a bicycle instead! Not bad for a procedure that doesn’t work, wouldn’t you say? No it wasn’t cheap, but it was the best investment I have ever made!!

  78. 11 yrs with ms, sp for last 6. tried all meds including chemo. edss 6.5. bilateral support outside the home and chair as only possibility for day trips or walks. last 3 yrs was dragging myself to part time job to continue to contribute to my family, this took all my energy so rest of time had to sleep. ccsvi procedure changed everything. i still have ms but can now walk nearly 2km with just a trekking pole, balance, dizziness, headaches greatly improved as is fatigue and vision crisper. 10 mos. in noticed slight decline and doppler found ijv on right side narrowing. before this time however there were days i wondered if the past 11 yrs had really happened, like a bad dream. now obviously i am feeling the symptoms more. we need a way to keep veins open and keep research going. ccsvi may not be the entire key but it’s role is enormous, at least for a large percentage of us. the last study here in italy trying to discredit ccsvi was managed by a neuro with heavy conflict of interest and lifelong sponsorships from pharma companies, nonetheless the italian ms assoc. gave the study to him also using donation money given in good faith. this guy had even initially threatened that any neuro backing ccsvi would be discredited by the italian assoc. of neuros, he was pres. at the time. he should not of been head of the ccsvi study.

  79. 11 yrs with ms, sp for last 6. tried all meds. bilateral support outside the home and chair as only possibility for day trips or walks. last 3 yrs was dragging myself to part time job to continue to contribute to my family, this took all my energy so rest of time had to sleep. ccsvi procedure changed everything. i still have ms but can now walk nearly 2km with a trekking pole, balance, dizziness, headaches greatly improved as is fatigue and vision crisper. 10 mos. in noticed slight decline and doppler found ijv on right side narrowing. now i am feeling the symptoms more. we need a way to keep veins open and keep research going. ccsvi may not be the entire key but its role is enormous, at least for a large perce of us. the last study here in italy trying to discredit ccsvi was managed by a neuro with heavy conflict of interest and lifelong sponsorships from pharma companies, nonetheless the italian ms assoc. gave the study to him also using donation money given in good faith. this guy had even initially threatened that any neuro backing ccsvi would be discredited by the italian assoc. of neuros, he was pres. at the time. he is free to do and say what he wishes but someone else should have been chosen for that ccsvi study.

  80. I just read this article and was offended for the undeserved credibility it extends to Dr. Zamboni and his liberation therapy. It was never a theory, but rather, a silly hypothesis appealing only to the desperate and the hopelessly gullible. Blame never was hard to identify:
    politicians willing to trade lives for votes and agree to whatever is popular,
    a scientific/medical community to willing to play along,
    a media that will print any sort of garbage so long as it sells (and nothing sells so big as cold, heartless doctors and scientists against the poor and sick), and yes,
    Dr Zamboni for engaging in junk science.

    The article also fails to mention the most important way in which Liberation Therepay lives on. The lives lost for lack of money–money taken away from useful medical applications to research nonsense.

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