MS liberation: the trial I'd like to see - Macleans.ca
 

MS liberation: the trial I’d like to see

Colby Cosh on why Dr. Paolo Zamboni should be the next reality TV star


 

Alberta Health Services, the centralized corporate behemoth that runs the province’s healthcare system, disappointed advocates of “liberation therapy” for multiple sclerosis last week by putting out an amazing discussion paper [PDF] surveying the relationship between MS and “chronic cerebrospinal venous insufficiency”. It summarizes clinical knowledge in an accessible way and raises points that even CCSVI skeptics have overlooked. One simple example: “If proven, the association between MS and CCSVI may actually be explained by MS causing CCSVI.”

Given the logical and empirical problems with Dr. Paolo Zamboni’s theory and the special risks of venous angioplasty and stent insertion, Alberta politicians can feel comfortable in taking a hands-off attitude toward Saskatchewan Premier Brad Wall’s aggressive push for more trials of liberation therapy. If members of the Stelmach cabinet still want to pay for some risk-free research, though, I have a completely serious suggestion: why don’t we test Zamboni himself? We could do it live on cable TV. Actually, since CTV’s flagship W5 program (with synergistic assistance from the Globe & Mail) played such a large role in creating the furore over Dr. Zamboni’s theories, it’s possible the network would like first crack at the broadcast rights.

Zamboni claims to be able to tell MS sufferers apart from healthy individuals with virtually perfect accuracy just by looking at suitable medical images of the neck veins. There is no reason why the world should settle for his mere assurance that he can do so, since this ability ought to be simple to prove. And if he can do it he has no reason to be afraid to demonstrate it. It does not make much sense for the world to perform countless multi-million-dollar trials of his treatment before we check out the most basic, inexpensively verifiable element of his claims. (It certainly does not make sense to let people buy MRIs and other scans for “venous insufficiency” until we know whether that phrase has any practical meaning.)

So why not let Dr. Zamboni declare what images he requires, take 50 sets of snapshots of MS patients and 50 sets from healthy controls, and let him have at the pile of 100 file folders? Invite him to Alberta. Pay his expenses. Give him as much time as he needs. Have clinicians (and, preferably, some conjurors) present to establish proper, bulletproof double-blinding. The cost would probably come in at well under $100,000 and we would have our result instantly. Either he identifies the MS patients at a rate much better than chance or he doesn’t. If he scores close to 100%, as he has implied he can, then we would have strong reason to believe that vein structures are associated with MS. And we could justifiably move on toward establishing the proper direction of the causal arrow that those crotchety killjoys at AHS are so concerned with.


 

MS liberation: the trial I’d like to see

  1. The sooner we get this figured out, the sooner we can get on to serious research into crystal therapy.

    • If proponents of crystal therapy can get a peer-reviewed research article with statistically significant results into the pages of a journal such as the Journal of Vascular Studies (where Dr. Zamboni's work has been published) then that might be something. :)

  2. I understand your righteous uber-skepticism towards the Zamboni theory, however it might be worth considering recent history. The last time Canada rejected the practical application of a Zamboni idea nearly led to an international embarrassment for our country. We were shown to short-sighted, unprepared and cheap. We are indeed fortunate that in the end, Zamboni was gracious enough to overlook our poor behaviour and helped to save the day with his innovation.
    http://ca.sports.yahoo.com/olympics/vancouver/spe

    • Sir, one internet for you.

    • LOL. Nicely done!

      I think the lesson here is that we should have trusted the "Zamboni" name for ice resurfacing, because of its proven 60-year track record.

      I'm not so sure we should trust the "Zamboni" name for problematic, highly speculative medical theories, which is why the bulletproof double-blind trial proposed by Cosh is such a good idea.

  3. Another excellent post Colby.

  4. I so hate it when I agree with you.

    You bastard.

  5. Don't let up on this one, Colby. Reason and common sense desperately need your commentary on this.

  6. It would be unfair to Dr. Zamboni because how does he know or we know the Doppler Ultrasounds were taken with the proper protocol. Maybe if we have Dr. Sandy MacDonald's staff do the Ultrasound we would know that Doppler Ultrasounds would have been taken with the proper protocol. I had my veins scanned in Barrie and it showed both jugulars were blocked. I had it done again in Newmarket and they showed no stenosis. I went and to Albany, New York and had antioplasty done to my jugulars veins and I am now on the road to recovery. You can not convince people who have had the Angioplasty that this is a scam. We have seen the improvements and can testify to it.

    • I agree with Marlene. Proper protocol is needed when diagnosing. My wife and I just returned from Mexico after the CCSVI Treatment. We say that the Doppler showed signs of reduced blood flow in the jugulars, but it wasn’t until she was under the fluoroscope can you see the true picture. Some individuals my have a blocked azygos vein which cannot been seen with MRI or Doppler as was the case with one patient while we were in Mexico. She had no blocked jugulars but the azygos vein was twisted.

      • As I say, Dr. Zamboni would be free to ask for whatever images he wants, prepared in any way he can describe. It would be preferable to have independent radiologists take the pictures–if a scientific theory can only be validated by a few select ninja wizards who possess occult powers, then it's not scientific (and this whole notion is something that should already have set off your B.S. radar). But if there is a reliable means of blinding the radiologist/technician as well as Zamboni from the knowledge of which patients have MS, we can use anybody you like.

        • I am still confused by the call for a hucksterish performance. Dr. Zamboni has done this research and it was blinded. (The later endovascular treatment trial was unblinded, but the earlier imaging research was blinded. He was seeing something, he found ccsvi in the MS patients and not in the control group in a blinded testing using transcranial doppler ultrasound.) He's now beginning a blinded randomized endovascular treatment trial. While it might be of entertainment value or convincing to people who don't take the scientific publications at face value, it really doesn't make any sense as a way for a scientist to operate. He's done his part: he did the research and put it out there, now it's up to other researchers to replicate it or not, and it's generated enough interest that the researchers are following up on it.

          • Skepticism on the quality of the blinding is not necessarily out of place.

            He's done his part: he did the research and put it out there, now it's up to other researchers to replicate it or not, and it's generated enough interest that the researchers are following up on it.
            Absolutely correct. But Premier Wall's gun-jumping in Saskatchewan is unforgiveable from a scientific and moral point of view. And the hucksterism inherent in encouraging those suffering from MS to flock immediately to this "miracle" is vile.

          • Just so I have this straight: you've followed this story, and the obvious, dirt-cheap, double-blind test suggested above is the first thing that made you say the words "it really doesn't make any sense as a way for a scientist to operate"?

      • She had no blocked jugulars but the azygos vein was twisted.

        How much did the Mexicans charge to convince the patient that the azygos vein had anything to do with blood draining from the brain?
        http://en.wikipedia.org/wiki/Azygos_vein

        I might like to ask for my pesos back.

        • The azygos assists with the blood drainage from the spine. The spinal cord is involved in many people with MS. A spinal lesion is often far more devestating than a brain lesion, because of the mobility loss.

          • Thank you for that. Has Zamboni cited "twisted azygos" as having anything to do with the spinal affectations of people suffering from MS? Has anyone?

          • Yes. He named the condition CEREBRO-SPINAL precisely because he saw that there were also venous malformation that involved the azygous vein and spinal circulation. Subsequent to his publications, he has also seen problems in other veins that are involved in spinal circulation.

          • And thank you for that. Next question, to those more intimately involved (than I) with the data generated so far. Has Zamboni any evidence that surgically "untwisting" the azygous vein is superior to a sham (placebo) operation in relieving the spinal manifestations of MS?

          • I am not aware of "twisting" being a characteristic malformation. Without specifically looking this up, my recollection of the set of malformations that cause reflux that Dr. Zamboni and others who are providing treatment are finding include: missing segments of veins such as the azygous, "webs" in the vein that impede flow, defective valves, constrictions caused by muscles, arteries and in some cases bone structures pressing against the veins.

            These are all believed to be malformations which occur in early development, I recall the figure, at around 3 months gestation.

            This is all at such an early stage that it is unlikely that we know all the possible problems that can cause reflux. It would certainly seem possible that "twisting" is a possible cause of impairment to blood flow in the veins and one which could cause reflux. I haven't seen it mentioned anywhere and have no idea whether it is something that can be fixed. We know there are problems that can't be fixed by simple angioplasty or stenting.

          • And thank you for that.

    • I had my veins scanned in Barrie and it showed both jugulars were blocked. I had it done again in Newmarket and they showed no stenosis.

      Marlene has, probably unwittingly, just exposed ultrasound-diagnosed CCSVI to be even less convincing as a useful concept.

      Glad to hear you are recovering, Marlene. But on what grounds (that may be identified by rational thinkers as founded) would you go to Albany to plast your angios when Newmarket showed that your angios didn't need plasting?

      • The Barrie scan can only show stenosis in the jugulars. The Newmarket scan was done by someone who does not have the proper protocol. The Angio done in Albany was first tested by a venogram (GOLD STANDARD of testing) the azygos vein can only be seen 100% by the venogram. If you do not follow protocol you will get incorrect information. PROTOCOL, PROPER TESTING is what confirms stenosis. PERIOD.

    • You can not convince people who have had the Angioplasty that this is a scam. We have seen the improvements and can testify to it.

      Marlene has, probably unwittingly, offered up a perfect demonstration of what happens when the placebo effect kicks in.

      Glad to hear you are recovering, Marlene. But no one should try too hard to convince you that it is a scam. The whole point of science is to attempt to disprove a theory; one's data may succeed or fail to disprove it. Failure to disprove may or may not (depending on the seriousness of the attempt) offer greater confidence in the theory.

      If it's not a scam, no one needs to convince anyone that it's a scam. If it is, you are too far gone, but it behooves serious people to convince everyone else. What is missing is the objective evaluation of the is-this-a-scam question, and Colby offers a helpful suggestion above.

  7. That was a good post. I don't agree with your politics but I do agree with your skepticism (And the great writing).

  8. Colby, you do realize that once the research rules this treatment as a flop, the hardcore MS types will simply claim "conspiracy" or nit-pick with the methodology of the studiesand continue to flock to Mexico.

    My spouse has already been accused of being "brainwashed by big-pharma' because she's not jumping on a plane to get the procedure…

    The next person that tries to tell her it's a miracle cure will discover there ARE side effects.

    • THIS IS NOT, I REPEAT THIS IS NOT A 'CURE'. The only people who keep say it's a 'cure' are the nay sayers. Not ONCE has it been mentioned by anyone who has been researching this that this is a 'cure'. So …. nay sayers stop saying things that are not true.

    • I wonder if you are the one keeping her off that plane…

      • I wonder if you have a valid argument, or prefer to imply that I'm an abusive husband…

        But thanks, now we can add "terrified wife" to the brainwashed accusation. You're not furthering your cause, you know. Frankly, if I were you, I'd be more afraid of her than of me. She does not suffer fools gladly.

        • Valid argument is a funny thing to say, since you clearly don't have one. And from what I'm reading FROM YOU, I would say -useless, negative husband- would be more appropriate. Unlike you, I have sympathy for the sufferers, even if I cannot except your "wifes opinion". You don't have any proof this is useless, neither does your wife. You just have opinions and flawed studies. You have no point. All that you argue that pro-CCSVI lacks, you lack as well. I won't go so far to say abusive husband, but a will say you are one miserable person. Really, when people are walking after this procedure, your words mean nothing. Placebo is just an excuse rather then a reason 'why' it is working. Give it a rest. No one said cure, no one said it was perfect, but to hear someone so strongly against this -with NO decent proof- clearly for your own bitter motives. You and your wife can choose to stay on expensive drugs, that is your choice, though it is everyone else's choice to SEE this has merit, get it a chance and ignore your grade school science.

          • James, you're resorting to personal insults to make a point. You no longer have a point to make. Posts like this make it difficult for people with MS to disagree with the loud voices championing CCSVI. But your definition of :proof" and mine are very different. Let's just agree to disagree, shall we, and tamp down the anger?

          • mostlycivil, you are no better.

    • MostlyCivil, I invite you to read my response below–written by someone who actually knows about the research studies in question. Nit-pick a medical study? Goodness, why wouldn't you want to know about how the study was conducted if it may affect your health or the health of a loved one? There has not been a single journalist who looked into the studies themselves–they have just jumped on a headline without doing the proper research. Did you know that research subjects who had one blockage in their veins were actually categorized as negative instead of positive for CCSVI? That's just one point of many that I welcome anyone to refute.

      No one thinks your wife is being brainwashed. Personally, I wish her all the best. You together as a couple can make decisions about how you wish to treat and manage her illness; no one is forcing her to be tested and treated for CCSVI.

      And no one is calling this a miracle cure, either. More research needs to be done. We need proper testing protocols and standards for the procedure. We need to study patients over time. Many questions still merit answering.

      And yes, as with any medical treatment, there are side effects. Did you know about Tysabri's side effect? A fatal brain infection? Thus far 28 patients on Tysabri have developed PML, yet it continues to be prescribed.

      • Hi Dawn, the actual figure for PML is now at least 57. I believe that is how many have died as a result of PML so far from enjoying Tysabri as their med of choice. :( Sad really

        of course people should make up their own mind if they are fearful of getting a simple venogram to see how their veins are working. Equally if they are afraid of angioplasty that is done many times a day, they should definitely not get looked at for CCSVI. PLEASE if you are frightened for GOD Sakes' don't get a venogram. I know its very scary for some of you.

        • Thanks, Judy. I had heard higher than 28 but could only find that particular figure. I can't believe it's risen to 57. I will be staying far away from Tysabri.

    • My side effects are 90% less brain fog & improving, 90% less primary MS fatigue, good balance, no more vertigo, feeling rested when I wake up, having energy, loss of spasticity in my muscles, proper blood flow, seeing veins in my arms, legs & torso which were invisible before, straightened toes, gaining back the ability to do yoga… I'll take those any day!

  9. Oprah watchers who take their kids to the doctor suspecting cancer every time they sneeze driving public policy and scientific research, is the androphile response here. The integration of women in the workplace inevitably leads to hysteria-driven snake oil seeking "research" – remember, this is the gender that believes in astrology and tarot cards.

    • This is pretty out there, even for the internet.

      • True dat. Desperation knows no gender bias.

        And guys? We're the gender that seems to have selective perception. A footlong hot dog is a foot. Other measurements, done in inches, are often…inaccurate. Artificially inflated, if I may use the term.

      • I bet this guy rocks out on the bar scene.

    • The integration of women in the workplace inevitably leads to hysteria-driven snake oil seeking "research" – remember, this is the gender that believes in astrology and tarot cards.

      Odd, that. At the mall, the other day, some of the weaker sex were obviously so ashamed of their irrational thinking that they were very convincingly disguised as men lining up at the lottery ticket booth.

    • Haha, wow. You knew how to find the 'Post' button. I. AM. SHOCKED.

    • Proper Conservative? That's not the right label for you. I dub thee Proper Misogynist. It's so much more accurate.

  10. It's true that the treatment need not have a comprehensible pretext or theoretical grounding to be potentially useful. But a) at the very least we need to know if there's any point to all this expensive imaging–we could dispense with it if there's ultimately no verifiable difference between MS and non-MS subjects, which is the finding in two follow-up studies that landed about a femtosecond after my original post; and b) "liberation therapy" doesn't need to be anyone's conscious "scam" at all in order to be useless or harmful.

    • Indeed. Scientists, even self-styled ones, can be just plain wrong sometimes. No scam. No conspiracy. Just wrong.

    • Admittedly I am only following this second-hand (through your posts and other stuff that pops up to the CBC-ish level.)

      Still I find it surprising that some arms-length assessment of the treated patients has not surfaced. I am making two assumptions 1) that most or at least many of the MS patients going overseas for treatment would tell their doctors and 2) that there are standardized tests for assessing the stage and severity of symptoms of MS.

      It strikes me that while a doctor's impression of a patient before & after may not be a proper double blind study, it still would either add confidence or doubt as to the efficacy of the procedure.

      • If you do it retrospectively, examining patients who have volunteered themselves because the procedure appeared to work well for them, then there's really no information to be gained. (MS is a disease already known to have a roller-coastery natural history, with random relapses and long periods of well-being.) If you do it prospectively, then you're doing exactly what's called a "clinical trial". Some of those are surfacing now.

        • So colby, you too have forgotten about us MSers who are primary or secondary progressive-we have no periods of well-being, no roller coaster, no randomness…yet we too are helped by clearing our blocked veins. if placebo means wiggling my toes for the first time in 10 years, i'll take it.

          Stop calling it a treatment for MS and call it what it is…venous angioplasty-a treatment for blocked veins…available to anyone in Canada except MSers

          • Sure. But a lot of people in your position have higher expectations than that, and don't like to hear the placebo effect discussed at all or don't think it is real.

          • Placebo is real, no doubt. And those that just measure improvement saying 'my feet feel warm', i am suspicious of. However when a person goes from a wheelchair to a walker, trust me, that's not placebo…

          • Exactly. it's not JUST placebo.

            What it is is placebo, plus relapsing-remitting or secondary progressive MS.

            Because you know, as well as I, that the classifications of MS are fluid, and mostly guesswork.

          • However when a person goes from a wheelchair to a walker, trust me, that's not placebo…

            Maybe it is and maybe it isn't. But to assert what I have pasted here shows you have a lot to learn about the placebo effect.

          • well everyybody can always learn more-no doubt-but I have 5 degrees, i didn't just fall off the turnip truck-and by god, if its placebo that gets me out of a w/chair, and allows me to become less of a future drain on society (let alone my own finances), allows me to teach again…i repeat, i'll take it. I don't expect that, but I'll take it.

            ps I actually do know quite a bit about placebo effect

  11. Great job Stewart!

  12. Incidentally, the italics are not mine.

    • My apologies, I can see that now. The italics are not your font.

  13. Maybe we should get James Randi involved?

  14. So the suggestion is that Zamboni or another scientist prove his theory by replicating his data? Setting aside the notion of it being done as a televised stunt, his data has been replicated by Dr. Haacke of Buffalo University. While the degree of association is not yet determined precisely, Zamboni with his ultrasound methods and Haacke with his MRIs both found statistically significant degrees of stenosis in the jugular veins of MS patients several times greater than that found in control patients. So the replication that is called for in this article has been done. Not in a huckster on tv way but in a controlled scientific fashion. The next step is to perfect the technique (which is not so simple), determine 'best practices' or how and when and with what type of catheter balloons at what type of diameters using what type of imaging, and put it to the test in randomized controlled treatment trials. Some such trials are already being planned. If CCSVI is real, it will prove out. As of now more research is needed and I hope everyone involved will treat each other with respect.

    • I would exclude "hucksters on TV" too, but I think we can all agree that that ship has sailed (commander on the bridge: Lloyd Robertson). And do you have a problem recognizing the existence of the new European studies that failed to reproduce the results you describe? http://www.theglobeandmail.com/life/health/experi

      • Yikes…do the research my friend. Those studies consisted of 20 patients or so in each and were published in the annals of NEuROLoGY…(oops bad fingers)…the very same neurologists who decry Dr Z's study of 65 patients saying the sample size is too small. Do you not smell just a bit of a stink here? In addition, the protocol used in the Doppler is not what was recommended in the Zamboni work. Talk to dr Sandy Macdonald in Barrie ON…please.

        • Between the two studies in question there were 77 MS patients and 41 controls.

          • You know, in the end, every person decides for themselves. Blocked stenosed veins are no good on anyone. if I did not have MS, i could get venous angioplasty in Canada…and I guess thats what is so frustrating. I did not come to my decision lightly, I am not a risk taker by nature…but this just feels right in my gut…ya know? Not desperate, no high expectations, i don't expect to walk again….just maybe stop the progression….so we'll agree to disagree.

          • There is absolutely no evidence that veins undergo "stenosis" analogous to arteries; they are not subject to atherosclerotic change and are naturally collapsable and distensible. Even in proposed CCSVI, the veins are not blocked, and there is at best some degree of unquantified "reflux" with no obvious clinical significance. Any physician recommending or performing an invasive procedure without any evidence of benefit is behaving unethically.

          • IRs performing this procedure are reporting that they are finding 50-100% blockages in jugular and azygous veins. This can be a result of backwards valves, aplasia, basically all the things that can go wrong with veins in the lower half of the body (chronic venous insufficiency, budd chiari disease) that have never been looked for in the chest and neck veins. As a result of the blockage in the jugular veins, the blood pools and refluxes; the reflux is the blood going up toward the brain instead of down away from it and can be seen on the transcranial doppler. The procedure itself is minimally invasive although not without risk. Any doctor must decide with his patient if the known risk outweighs the known benefits of a procedure. In the case of CCSVI, the U.S. doctors who are treating it have decided with their patient that it is to their benefit to have unblocked and unrefluxing blood flow of the deoxygenated blood away from the brain.

          • Which IRs? Where have they published? Evidence for "backwards valves"? Aplasia? Congenital malformations generally do NOT appear in isolation from one another, and there is absolutely no evidence of anything congenital about CCSVI. Budd-Chiari syndrome arises from the thrombotic occlusion of hepatic veins. Not even Zamboni is suggesting that venous thrombosis is related to this.

          • The international union of phlebology put out a consensus document stating that CCSVI was a result of truncular congenital malformations:

            Lee BB, Bergan J, Gloviczki P, Laredo J, Loose DA, Mattassi R, Parsi K, Villavicencio JL, and Zamboni P: Diagnosis and treatment of venous malformations Consensus Document of the International Union of Phlebology (IUP)-2009. Int Angiol. 2009 Dec;28(6):434-51. Montecarlo September 4th 2009 [uip09]. PMID 20087280. PDF$ Google Scholar
            Division of Vascular Surgery, Department of Surgery, Center for Vein, Lymphatics, and Vascular Malformation, Georgetown University School of Medicine, Washington, DC, USA.
            Info
            A Consensus Conference on Venous Malformations – headed by Prof. Byung B Lee from Georgetown – and experts from 47 countries – studied the evidence and unanimously voted in favour of officially including the stenosing lesions found in CCSVI in the new Consensus document and Guidelines.

            My information on IRs comes from watching the videos of the recent CCSVI symposium held at Kings County Hospital in Brooklyn NY.

          • The consensus document from the international union of phlebology that I posted about also mentions Budd Chiari as a vascular malformation of the hepatic veins. You can get the same budd chiari result from thrombosis as you mentioned or as a vascular malformation; it is the latter of the two that I was referring to.

          • I can't say for certain but I think it's a problem in the imaging technique. There is still much debate about which imaging techniques are best for finding CCSVI (transcranial ultrasound doppler as Zamboni used, MRI of the veins as Dr. Haacke has used, transcranial ultrasound doppler under valsalva conditions as one of the European studies used, invasive catheter venogram as is used clinically, or intravascular ultrasound used during a catheter venogram which makes it pretty hard to miss anything). The MRI shows lack of blood flow, but it has artifacts and may appear like there is a blockage higher up but the narrowing may actually be a result of low blood flow caused by a blockage lower down. Transcranial ultrasound doppler shows flow impressively but in the US it's a pretty obscure technique. I think the best research will be done using the invasive catheter venogram with or without intravascular ultrasound in the hands of a skilled operator.

          • You "think" so? What expertise do you have in this area? And who will pay for cath lab time devoted to such venograms?

          • Insurance pays when any blood vessel in the body is stenosed over 50%.

          • Absolutely false. Carotid endarterecetomy, for example, is performed only when a carotid artery is at least 70% stenosed, and the benefit as regards major stroke prevention is not that high.

          • Regardless in the US people are getting their insurance to cover the ccsvi treatment. Interesting about the carotid endarterectomy, I was not aware of that.

          • Carotid endarterecetomy: is that what was shown a decade or so ago to ever-so-marginally improve survival, but only if you ignored the ones who never escaped hospital alive following the procedure? If so, has its scorecard improved since then?

          • The benefit comes mainly for patients who have experienced a non-disabliing stroke or TIA which can be attributed to a vessel at least 70% stenosed. In such cases, the benefits more than outweigh the risks, but the benefits exist only for certain subgroups in the asymptomatic patient population – I don't have the exact numbers on me, unfortunately. It's notable to mention that this is an open procedure done with continuous EEG monitoring.

        • If there exists a "dramatic association" (as Zamboni claims) between CCSVI and MS, sample sizes of that magnitude are sufficient. In fact, we should expect that nothing less than CCSVI in 90+% of MS patients and none at all in controls. And there should be no need for some kind of "special" protocol; Doppler ultrasound of blood flow in the neck is not a novel idea (especially not for the arterial side!).

      • One of the two European studies used a Valsalva maneuver (hold your breath, turn your head and "push"…it helps expand the jugular vein as it closes off the escape routes) which is the opposite of how Dr. Zamboni tested for CCSVI (he specified that ccsvi can be imaged when it is not under Valsalva conditions).

        It's like someone saying, "Hey, I found treasure on Nonvalsalva Island!" and another researcher sails to Valsalva Island, does not find treasure, and declares the first guy wrong. Sailing to Valsalva Island will do nothing to determine if there is treasure or not on Nonvalsalva Island. (No insult to intelligence intended with this analogy.) :)

      • Well, the European studies you point out counted those patients who tested positive for a blockage in one jugular as "negative." And they did not study the azygous vein at all. Perhaps you should look into the facts of the studies before using them for your argument.

        • Or we could go ahead and conduct the test I suggest above, since any failure to confirm Zamboni's work is likely to be met by methodological objections from lay insta-specialists, and his theory is starting to seem awfully non-falsifiable just on the basis of this comment thread. You are energetically proving why it is useful to start with the most basic question: does Zamboni have a purely vascular algorithm for detecting MS? No evil neurologists or other nefarious conspirators against the truth need be involved at all.

  15. I will try to give you a hand dear Joan.

    "….well…that's interesting. His page wouldn't take my comment. Here it is–

    There is too much misinformation to cover in one reply. I would direct you to http://www.ccsvi.org for the published research and fact-based information. The Alberta pap…er is not correct. MS cannot cause truncular venous malformations- which are congenital. These malformations are detected by interventional radiologists in 90-100% of all pwMS around the globe. Doctors are finding web-like structures, cysts, missing and malformed veins in 90-100% of pwMS when tested with the gold standard venography. Dr. Zamboni does not "look at pictures". He utilizes doppler ultrasound technology (which was required by the medical ethics committee in Italy to justify usage of the gold standard invasive venography) to study blood flow. Please come to http://www.ccsvi.org to learn more. Joan Beal"

    • 'Dr. Zamboni does not "look at pictures". He utilizes doppler ultrasound technology (which was required by the medical ethics committee in Italy to justify usage of the gold standard invasive venography) to study blood flow.'

      Which is to say, he looks at pictures. They're not pictures taken with light, but they are certainly pictures, and I would hope he looks at them as opposed to sniffing them.

      • Perhaps you could be more open-minded, Colby. Maybe the images are in a sealed envelope placed on the Great Zamboni's forehead. Surely we would have no problem with that?

  16. Thank you Arne for posting MS Beal's reply. She is correct.
    The German paper used a different protocol to test than zamboni did.
    The diverted from Zamboni in 3 critical ways, upper jugular, vs lower, parallel probe position rather than transverse and use of valsalva maneuver vs, no valsalva, as Zamboni directs. Apples and oranges.

    Is there some meaning perhaps in the breakneck speed with which these papers were rushed to press? (6 weeks later with no peer comment period) The editor in chief of the journal best mispronounced where their papers were published has been quoted widely (WSJ,NYT, LA Times) attempting to discredit CCSVI. Rebuttles have been written and submitted to him, let's see if he's man enough to publish those. He shut down the venous theory in the 1980's, before Zamboni proved Franz Schelling correct. He won't stop it this time. Neither will you, Colby. The truth is winning. the delays just add to the suffering, whose side are you on?

    • Yes, that is definitely a reasonable, not-at-all-hysterical way to put the question. Rest assured, you don't sound anything like a fanatic drunk on indignation, conspiracy theories, and bogus certainty.

    • He won't stop it this time. Neither will you, Colby. The truth is winning. the delays just add to the suffering, whose side are you on?

      Ah, yes. Just the sort of reasoned, evidence-based, scientific progress we have all been looking for.

    • THANK YOU CAROL. ALL my CCSVI symptoms are due to blood circulation. ALL of them. That is what so-called MS is. POOR BLOOD FLOW AND CIRCULATION. NO brainer. Nay sayers too bad you are not lucky enough to be in our shoes for a week. I have been living this for a longer period of time and why am I so angry all the time now? BECAUSE as Carol said this was knowledge presented in the 80s and the nay sayers did not want to or were too lazy (nah not it) to even discuss the find. They knew about this even years before but thanks to no INTERNET we would not find this out. I could have been relieved of this most frustrating and at times unbearable condition and I would not be ranting right now. NO THANKS TO ALL THE NAY SAYERS WHO HAVE NO CLUE UNLESS YOU LIVE THIS.

  17. I do wish that those intent on attacking Dr. Zamboni and his theories would do two things – take the time to actually read his work, and then explore the ideas presented in there with the intent of trying to understand the implications for individuals with MS, their families and society as a whole. It's easy to take the facts that support your case and present them as if you and they were the true authorities; less easy to do the necessary research to present a more balanced point of view. But then I suppose it's not considered necessary to base opinion on research, and it's so much easier and more fun to be sarcastic and cutting. Facts might get in the way of a good opinion.

    • Do you have some comment specific to the material posted above, or is that just something you cut-and-paste into all comment threads on this topic?

      • Do you have some comment specific to the material posted above, or is that just something you cut-and-paste into all comments that question the basis of your opinions?

        • But you haven't questioned it. I suggested a legitimate, simple, statistically powerful way for Dr. Zamboni to confirm his theory and you wrote about "those intent on attacking" him. I plead not guilty: what have I written that he (as opposed to his cult following, with its tiresomely familiar they-laughed-at-Einstein Mad Libs) could regard as an attack?

    • Margaret, if a scientific theory is valid, it should have no trouble standing up to these skeptical taunts. The research is NOT THERE yet to support this theory, so those suffering with MS deserve better than to drag themselves and-or get pushed into this trap of desperate straw-grasping. A true scientist will attack his or her own theory most mercilessly, because if the theory survives intact after every experimental assault, it is thus strengthened.

      Zamboni claims to be able to tell MS sufferers apart from healthy individuals with virtually perfect accuracy just by looking at suitable medical images of the neck veins. That's not science. That's snake-oil calibre bravado.

      • Zamboni makes no claim such as this, that is your claim, so you can say the stupid things you do so well.
        Ha, Ha, Made YOU look!

        • Well, it actually isn't my claim. See the italics trick, there? I'm quoting Colby. Go ahead, look way up at the post. But thanks for your classy choice of words. Really adds to the conversation.

      • If you want to know if a scientific theory is valid, it might be good idea to examine the theory itself, not quote someone else's opinion of it. Also to read what the scientist themselves had to say about future research, not make assumptions about what they did say.

        • Did you not read the linked document compiled by Alberta Health Services?

          • Yes, it appears to be an information paper based on an assessment of the possible implications of Dr. Zamboni's findings, I would assume by staff, and consultations with neurologists as to their opinions. It generally suggests that MS and CCSVI may be related, but many neurologists do not think so, and that people who are interested should do their own research and be very skeptical. It also seems to suggest that without scientific trials we can't know if the results are real or what the risks really are, but does not support doing studies. I suspect the same (we can't know how effective the treatment is or its risks) could be said about most drugs when they first come to trial, the difference being that the companies that produce them are both equipped and ready to do the necessary studies that will bring them to market – and to the people who hope they will help.

  18. So why not let Dr. Zamboni declare what images he requires, take 50 sets of snapshots of MS patients and 50 sets from healthy controls, and let him have at the pile of 100 file folders?

    I am sure that if he requires videos of the doppler-flow ultrasound, you the Albertan taxpayer would be ok with forking out for a 42-inch HDTV?

    And to test the hypothesis of better-than 50% acuracy versus the null hypothesis of 50% accuracy, under the assumption that the actual accuracy is close to 100%, I am not sure you would even need as many as fifty subjects per group for more-than-reasonable power. Hmm, where's a math geek when you need one…

    • Well, consider if you performed a coin toss 10 times and got 9 heads to 1 tail – that'd be enough to suggest that you were tossing a biased coin, right?

  19. Rather at this stage there is accumulating anecdotal evidence that there are positive outcomes for patients who undergo the treatment. The treatment is a surgery and not completely risk free, (I thought I had heard of one associated death but wasn't able to find the report.) The centres performing these treatments are dispersed (Mexico, India, Europe) and patients including Canadians are flocking to them.

    If you want to run with anecdotal evidence, Montreal is a lot closer for many Canadians than is Mexico, India or Europe. http://www.saint-joseph.org/

  20. I suspect that the detailed pathways through which Vitamin D helps prevents certain cancers will be a fertile ground for research for decades yet. I still take a pill every morning all winter.

    You take a pill a day every winter because it is cheap, it attempts to correct a scientifically-confirmed deficiency for sun-missing Canadians, it comes with scientifically virtually-guaranteed no side effects, AND it might help reduce the higher risk of some disorders seen in northern latitudes, and maybe other disorders, too. As of this point, Zamboni does not come within a hockey rink of that level of confidence.

  21. So you're prepared to demand that other people present "balance" and do their background research, while professing not to have heard of any "logical and empirical problems" with the Zamboni theory or health risks involved with the treatment? And you challenge other people's understanding of science while dismissing questions about double-blinding as insolent and unfair, displaying no knowledge of why stage magicians are sometimes consulted on research, and boasting of "promising" unpublished results? (It almost sounds as though we can tell the good "science" apart from the bad, a priori, by the degree to which it reproduces the desired result.)

    There can no reasonable grounds in principle for any objection to the test I've proposed. You're squirting squid ink.

    • I referred to the word "conjuror" in that portion of your article because it is a word that implies that the treatment suggested is on the level of a conjuror's trick and could be dismissed as an illusion. I don't recall commenting on the idea of double-blinding.

      Nor did I say I had not heard of any 'logical and empirical problems' or health risks – I asked you what they are, and if this was a good basis for dismissing the theory as a whole.

      As for doing background research – well, you're the journalist, right? I'm just someone who thinks about what they read and investigates the things they're interested in.

      As for proposing scientific double-blind studies, that's probably best left to the scientists, not made into a reality show. And they're working on them.

      You'll notice that my comments are to your arguments, and not aimed at you personally.

  22. THIS MUST BE DONE RIGHT NOW!!!! I will even contribute to the outstanding expense !! j k Thank you Colby and what would the Nay Sayers argument be now? This is doable and we certainly have plenty of people to do this NO PROBLEM. Lets g…et going on this. Testing can probably done in 2 months. NOT LIKE THE MSSs who want this to drag out for YEARS. Please, this is simple as is the finding of CCSVI. Reality is biting and boy do I want to scratch it!! EASY AND SO SIMPLE.

    P.S. I believe MS is caused if you DO NOT get angioplasty treatment. Then MS develops to the point that the nureo has to figure out how to repair the damage. Yeah right. Took them approx 6 decades to find out that they know nothing about MS. Good luck on finding out that they now have to get another job. SHAME. SHAME.

  23. Oh my God. What is wrong with our Government, PIG Pharma and The Multiple Sclerosis Societies who say poor blood flow and poor blood circulation is good for you? I do not understand why they seem to think my poor blood flow is no big deal. Really, that is what their response is. How come? Please tell me why is this a good thing for me? Approximately 75,000 people in Canada have this problem and the rest of the population do not have this problem. I call this discrimination causing repairable issues denied. Hmmm I call it attempted murder. If a nay sayer was in my shoes he would say nothing different that I have said.

    • What is wrong with our Government, [Big] Pharma and The Multiple Sclerosis Societies who say poor blood flow and poor blood circulation is good for you?

      Got any quotes where they say it's great? Those 75,000 people with this alleged problem (presumably of the CCSVI flavour): would you kindly share with us the epidemiology that shows the harm it causes? Or, if you meant that 75,000 have MS, then never mind; no further evidence from you is requested.

      Or are you equating hesitation (in the absence of proof that it's dangerous) as some sort of relief (that it's actually good for you)? That would about meet the scientific standard of many comments on this page, mind you, but still…

  24. So, in other words, your *fourth* opinion finally found some evidence of "reflux"? I'm sorry to say, but I think you've been misled. Certainly for the arterial side, MRA is pretty much sufficient to assess blood flow in the head and neck, but you wouldn't necessarily proceed with that following a negative Doppler study looking for carotid stenosis.

  25. @MostlyCivil Wow, you are one sad spouse. Miracle cure? That's ridiculous, possible huge step forward in thinking and treatment, It may very well be, and YOU have no proof otherwise. Neither do the 2 POOR studies (both testing incorrectly and one with LESS patients then Zamboni's first) and all the supporters that bulls**t that it is a scam.
    What is ridiculous here is that many people with MS HAVE had it done and it HAS been successful. There is something to this, no matter if it only helps (EVEN SOME), aside from if it cures. You are one seriously lousy person for not at least having some feeling for your wife's future (and being cautiously optimistic) and sticking to the side of dinosaur thinking claiming to know 100% what is false. What a joke these comments are, I guess its easy to sit in your chair and watch others suffer due to whatever bitter views your personally hold.

    There is ABSOLUTELY something to this treatment, no matter what nonsense position you hold, people do not walk again from the placebo effect. Oh, but sure, I bet the lies come from the patients who post success on YouTube and not the companies and societies that have money to lose. Yea, you people are real clever.

    • I don't think it's a scam. James. I think Dr. Zamboni has yet to prove anything. I look forward to proper research to prove it works. Or doesn't. Then my wife will have all the information she needs to take whatever step she wishes to.

      For you to suggest I'm enjoying other people's suffering, and more specifically, "not at least having some feeling for your wife's future" is where you take your argument beyond the pale. I invite you to leave me a contact g email, where we can arrange a face to face meeting. I don't believe you would ever say those words to my face, so you may wish to rethink using them in an anonymous forum.

      Should you ignore this request, I shall no longer respond to any of your posts.

      • Oh I'd say them to your face alright. But let's face it, you wouldn't show and this is all internet bravado. Stop being a tough guy and start sounding a little more cautious, rather then negative and pessimistic.
        Your comments are lousy, so deal with the reaction. I truly, truly hope you are not the person you seem to be.

        I could really care less about your continued response, as I see on here, most people are sane and giving this a chance. It just a shame you come on here, and voice your 'all-knowing' opinion to dishearten. Take care, and one day you'll live up to your name.

        • Our little spat is a waste of time. We'll never meet, we both know it. We have some seriously differing opinions, and when it comes down to it, I really don't care about this fight. This is only about helping MS patients. They aren't attack you, stop attacking them.

          It all comes down to allowing MS patients to continue to explore an option which has already proven useful, without negative commentary from people who have never been there. Whatever choice each makes is their own, but casting doubt (out of fear or just plain pessimism) is weak. I'm sure all MS patients can respect your wife's choice, so respect the ones who choose to follow CCSVI. Their experience may eventually lead to the help your wife needs. I know we don't see eye to eye, so I'm going to leave it at that.

  26. You are being ridiculous. I heard Dr. Zamboni interviewed on the radio and he seemed very credible.

  27. Just thank God everyday Colby, that you do not have MS and have to go through what thousands are going through every day. From a personal perspective when I see my wife not able to get up from bed, collapse from standing a mere few minutes during the day, not able to get the sense that she is just as great a mom as the average to our son……and on and on…..any hope, no matter how little or politicaly spun, is better than nothing.

  28. As a physician who has watched the health of MS sufferers fade away, I am very intrigued and heartened by the work of Dr Zamboni. He has dedicated his work to find something that we can do for MS patients like his wife. The fact that MS patients have iron deposits in their brain like that found in the legs of people with sluggish venous return was a stroke of insight (as probably only a vascular surgeon might notice – surgeons are not usually involved in treating this 'medical' condition.) His work and results are too convincing to ignore even if it is only half as effective as he claims.

    • It is interesting to note that doctors have known for years that MS patients have had abnormally high levels of iron in their brains, but they never had an explanation….until Zamboni came along.

  29. The problem is mainly financial in that there will be a tremendous cost if the health care system embraces this protocol for all MS patients. A Doppler ultrasound of the neck on every patient is one thing, but then add an expensive MRI of the venous system. Also, many MRI's centres do not have the software nor the radiologist with the experience to look for venous problems in the chest (where most of these lesions have been found) . Even if these do not show a constriction, these patients still need a 'gold standard' venogram to be sure, not to mention that they will still need the surgical procdure after this. No wonder the health care systems are trying to slow this down. The problem is MS patients do not have time for all this posturing. I say – Go straight for the money and do a venogram on all MS patients. This is where the money is – the most definitive investigation to test the theory of D. Zamboni. It will soon be found out to be effective or not.

    • Dr. Phillips, let's not forget the cost of expensive MS drugs that might be ameliorated if this treatment proves effective. The CRAB drugs run from about $20,000 to $35,000 annually, with the new drug for walking–Ampyra–costing about the same. (Interesting to note that Amypra had only a 40% success rate in clinical trials, but it's still being prescribed.) That's costing the health care system $40,000 to $70,000 annually for just one patient. And there are several other drugs an MS patient may need. For instance, clinical depression is another common symptom of MS.

      Also, let me correct you on the statement above "where most of these lesions have been found"…you mean "where most of the blockages have been found." Blockages in the azygous vein can lead to lesions in the spinal column.

      • Yay Dawn :)

    • I am trying to figure out how there will be a tremendous cost if they fund Tysabri, Copaxone or Avonex for all for life. How much is Tysabri per month? How about add it up for 3 months? THAT is a cost. Take drugs, spend lots of money . .why treat a possible cause of the problem? A real way to stop formation of lesions. Sometimes I feel like I am in a book of Stephen King with people who do not think with sound reasoning.

      What you are saying makes no sense whatsoever. How much are DRUGS? Keeping people drugged?

  30. This would be easily answered by doing venograms on 1000 MS patients and 1000 controls!

  31. If atherosclerosis causes the coronary arteries to undergo narrowing and thereby producing symptoms of angina and stents are an approved treatment then I do not see why CCSVI caused by MS cannot be treated with stents and thereby help alleviate whatever symptom that arise as a result of the CCSVI.

    • Veins are not subject to atherosclerosis and arterial stents cannot travel downstream. They are not comparable.

  32. I've never seen the placebo affect help someone swallow again, so they no longer needed a feeding tube. Nor have I heard it help a person go to the bathroom normally, so they no longer needed a catheter. And the ability to move previously paralyzed limbs? I don't think placebo is possible in such a case.

    I'll give to you the fact that placebo might be associated with self-reported, subjective improvements like pain, brain fog or fatigue. But the number of MS patients who have had the procedure and now have lower EDSS scores (disability rating–0 being healthy and 10 being death) than their doctors have measured in years is staggering. If it's all placebo, it would be the biggest example of such in history.

  33. But you see Jacob, based on Colby's astute reasoning, it would be "angina causes atherosclerosis."

  34. Colby, this must be the most commenting you have ever had. Why else would you keep putting up garbage articles about such an important subject. Stop being so pathetic and use your powers for good.

  35. Although not in a published study, Zamboni has recently been quoted as saying that the new testing study has done over 500 blinded tests, with 90% of pwMS having detectable CCSVI as compared to 2% of the general population. All very interesting, but completely irrelevant to treatment.

    An even simpler and cheaper study than Colby's, which would advance the debate, would be to get 100 consents from Canadians who have gone abroad for treatment, compare their current EDSS scores from a post surgery neurology exam against the EDSS scores pre-surgery. Get the neurologists already paid to do the work to provide the 2 numbers to the spreadsheet – add and divide by 100. On average, pwMS get worse over time, i.e. EDSS goes up, if the average over 100 people is that people get better, then some clinical benefit of the TREATMENT is established; justifying further trials on the TREATMENT. Unlike Colby's study, my study involves no unnecessary medical treatment, merely consents to the use of existing anonymous medial information – 2 EDSS scores.

    I am pro-CCSVI, but I think it is disingenous to say that only anti- CCSVI people call this a cure.

    Occam's Razor. CCSVI is characterized as being a generally congenital disorder, similar problems occur in veins around the body. The redundant venous system is stressed in people with MS and fails over time. Instead of varicose veins and skin ulcers, when the cerobrospinal system has a venous insufficiency problem which is permitted to become chronic, MS is one of the possible results. I might be wrong, and my opinion is irrelevant.

    The Canadian study proposed by the premiers may also be irrelevant (except that some of the people in the study get to be treated), as there are studies on the treatment underway in a number of places and the preliminary results presented at the CCSVI Symposium at SUNY in July are very promising – overwhelmingly so.

    Fingers crossed not only for people who have or might get MS, but also as a possible research path for similar diseases, like TM.

  36. I agree let him come to Canada and do the tests, people are waiting for the treatment, and the hope that it works, and put it to rest…either it works or it doesn't….and move on this peoples lives are at steak HERE…..LET'S FIGURE THIS OUT!!!!!!

  37. What a ridiculous article .. do the tentacles of Big Pharma reach all the way into MacLeans ??

    Here's a easy test …. call say 100 people who have had the treatment , or 1000 even . How many feel better ? how many don't ?… write down the answer and publish it on the internet ..

    Angioplasty is a cheap and proven technique and if it helps MS so much the better .

  38. There is a discrimination lawsuit in the works to help bring the liberation treatment to all Canadians.

    Please visit: http://www.angioplastyforall.com/

    Join us.

  39. @Stewart_Smith who stated:
    "There is plenty of anecdotal evidence of a positive effect, I have not seen any for a null or negative effect on those undergoing the treatment."

    In these 15 pages, you will see that not everyone has had a "miracle" recovery. The staunch devotees still say they'd try it again….hope does spring eternal.
    http://www.thisisms.com/ftopic-12342-days0-ordera
    http://www.thisisms.com/ftopic-13020-days0-ordera