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Archive for the ‘liberation’ Category

Canadian Government Promises to Fund Junk Science to Appease Zamboni Cult

Posted by Colin Rose on June 29, 2011

from the CBC

It was inevitable that the federal government and its advisory committee would cave into the incessant political pressure of the Zamboni cult. The government is trying to appease the Zamboni zealots who have mercilessly intimidated politicians to fund “liberation” treatment, which is nothing more than high-tech faith healing. Unscrupulous politicians like Libby Davies and Kirsty Duncan have exploited the internet presence of the cult and the public’s sympathy for desperate people for political gain to make the government look uncaring and aloof when it was just trying to pursue the time-honoured scientific method of determining truth.

All that has changed since the advisory committee first recommended not to fund clinical trials was the introduction of a private members bill to mandate clinical trials. Obviously this spooked the government because it would have been forced to vote against the Zamboni cult and lose political capital with no political benefit. Scientists and politicians alike are being viciously slandered by the Zamboni cult using the tools of the internet. A neuroradiologist, Dr. Rubin, on the advisory committee even admitted that he remained unconvinced that Zamboni’s “CCSVI” existed but he still voted for trials of “liberation”. Clearly, the decision was politically motivated. The real scientists were tired of continuously being accused of pandering to pharmaceutical companies and threw in the towel.

Normally a staunch resister of blackmail, intimidation and appeasement in other areas, Prime Minister Stephen Harper should know better. Appeasement of totalitarians, terrorists and  self-righteous zealots signals weakness of resolve and only empowers them. Zamboni zealots want nothing less than publicly funded “liberation” on demand. Promise of trials will not satisfy them. When well-blinded controlled trials eventually show that “liberation” is useless, the cult will still demand public funding by claiming that the trials were biased and influenced by Big Pharma. They have a religious faith in “CCSVI”, revealed, scientifically absurd truth from their saviour, Paolo Zamboni, and nothing will persuade them otherwise. I have tried and have been mercilessly attacked on blogs and Facebook. Absolute faith in revealed truth will tolerate no criticism.

There is now ample evidence that Zamboni’s “CCSVI” does not exist as a disease and that “liberation” is a cruel hoax bilking desperate people out of their life savings. See blogs for details of the junk science behind “CCSVI”.

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

https://medicalmyths.wordpress.com/2011/02/04/the-perfect-crime-ccsvi-not-leaving-a-trace-in-ms-liberation-is-a-hoax/

At any rate, it is doubtful that any good well-blinded controlled trial of “liberation” will ever get done, at least in Canada. When the Saskatchewan Health Research Foundation asked for grant applications for trials of “liberation” it received only one and even that one didn’t meet the scientific standards of the Foundation. No true scientist is going to make him or herself a laughing stock by attempting to treat a nonexistent disease and go down in history as another fool who believed the Zamboni myth.

Posted in ccsvi, junk science, liberation, Zamboni | Tagged: , , | 106 Comments »

“The perfect crime? CCSVI not leaving a trace in MS” – “Liberation” is a hoax

Posted by Colin Rose on February 4, 2011

Just published today, is a report of the first independent investigation by Christopher Mayer, et al from Germany with no connection to drug companies that attempts to use Zamboni’s Doppler technique for diagnosing “CCSVI” but in a rigorously controlled and blinded manner.

Conclusion: “This triple-blinded controlled study does not support insufficient extra- and intracranial venous flow in MS. Together with two other recent studies, this constitutes compelling evidence against a significant contribution of CCSVI to the pathogenesis of MS. As interventional procedures such as transluminal angioplasty are derived from the non-confirmed CCSVI concept and can result in serious adverse events, we strongly discourage the use of these procedures on the grounds of the present evidence.”

At least four blinded studies using magnetic resonance venography came to the same conclusion.

This is what we predicted in November, 2009 when Zamboni’s “breakthrough” was first announced by the scoop-hungry media. The absurdity of the concept was quite obvious but emotional YouTube videos of instantaneous improvement in symptoms overwhelmed rational thought.

Face it, true believers. No blinded study using any technique has been able to reproduce Zamboni’s data. Zamboni succumbed to irrational self deception in a futile attempt to cure his wife’s MS. “CCSVI” doesn’t exist. All “liberation” factories should be shut down, now. Any doctor who continues to do “liberation” should lose his or her license to practice.

If nothing else of use results from the Zamboni fad, which has cost patients, charities and governments at least $one billion, we should have learned a number of lessons:

  • the absolute necessity for careful blinding of clinical trials before a paper on them is accepted by any medical journal.
  • the necessity for regulation of surgical procedures in the same way as drugs are regulated.
  • the necessity for ethical doctors to increase their presence in the internet social media to counteract patient hysteria and the venality of some members of their profession.
  • before media reporters are allowed to report on medical and scientific topics must take a course in assessment of the validity of publications in journals.
  • in this internet age, high school science education, in addition to the standard curricula, needs to teach skills in the assessment of the validity of data and conclusions drawn from them, using the Zamboni fad as a classic example of what not to do.

The fad has also put a focus on the powerful effects of faith healing on the symptoms of MS as seen in this video.

Exactly the same instantaneous “cures” are shown in numerous post “liberation” videos. Faith in modern technology, pseudo-science and surgeons is replacing faith in the traditional saviours. The psychology underlying faith healing in MS needs investigation. Because of the intermittent and prolonged nature of the disease, MS patients are particularly prone to faith healing, when they are given some hope for the future. There seem to be a lot of MS patients whose symptoms are to some degree subconsciously self-inflicted out of depression or to attract sympathy who could be helped with the right form of psychotherapy.

Posted in ccsvi, faith healing, liberation, multiple sclerosis, Zamboni | 68 Comments »

MS patients have normal intracranial pressure-Zamboni’s “CCSVI” does not exist, “liberation” is futile

Posted by Colin Rose on February 3, 2011

Paolo Zamboni must be getting just a little nervous over the continuing failure of any other investigator to find the slightest evidence for “CCSVI”, his purported venous “reflux” that could only damage the brain by causing an increase in intracranial pressure. The latest is a report by Rolf Meyer-Schwickerath, et al., using the elegant, noninvasive technique of measuring venous occlusion pressure, who showed that intracranial pressure in MS patients is perfectly normal, but increased in patient with known causes of increased intracranial pressure. These observations confirm previous studies using magnetic resonance venography showing that MS patients have the same wide variation in head and neck venous anatomy as normal people. As we have explained in our original post on “CCSVI” even total occlusion of both internal jugular veins does not result in increased venous pressure of increased intracranial pressure due to the extensive venous collateral circulation from the head.

Their conclusion:  “In summary, there is no evidence of an increase in intracranial venous pressure in our MS patients due to a CCSVI mechanism in MS. Our findings do not justify operative procedures.” In other words, Zamboni’s “liberation” treatment for MS is useless.

To date, at least $one billion has been wasted on Zamboni’s seductive myth. When will the medical profession start policing itself and shut down all the venal charlatans deceiving desperate MS patients and their families into depleting their savings to have “liberation”?

Posted in ccsvi, liberation, Zamboni | 1 Comment »

Paolo Zamboni-Medical Con Man Supreme-Patenting a Disease

Posted by Colin Rose on January 26, 2011

When I first heard about Paolo Zamboni’s miraculous surgical “cure” for multiple sclerosis, I had supposed, that in addition to his desire to treat in wife’s MS, he was motivated by the delusion that he could earn a place in the medical pantheon, alongside Jenner, Salk, Banting etc. Only after viewing various internet postings has it become clear to me that Zamboni  plans to make himself a billionaire by patenting a disease, “CCSVI”, and the means to diagnose it. He realizes that he can’t patent the “liberation” procedure which is now done by dozens of avaricious, unscrupulous surgeons around the world but he can patent the machinery to diagnose the condition for which “liberation” is the treatment.

In 2008 he applied for a US patent for a “System for Diagnosing Multiple Sclerosis”.  Note that there is no mention of his employer, the University of Ferrara anywhere in the application. If the University had considered “CCSVI” to be a significant innovation it would surely have insisted on applying for the patent as is its right. Also, note that he does not claim just to be diagnosing “CCSVI” or just neck vein abnormalities. Apologists for Zamboni often claim that he is only diagnosing “CCSVI” and only secondarily MS. To quote: “An embodiment of the invention is a system for diagnosing multiple sclerosis based on the determination of the rate of reflux, increased indices of resistance in the cerebral veins for providing clinical data useful for diagnosing multiple sclerosis.”

At the same time Zamboni is acting as a consultant to Esaote, a Genoa-based manufacturer of ultrasound equipment which is selling the only machine approved by Zamboni for diagnosing “CCSVI”. No doubt Zamboni envisions this machine being bought by the thousands, if not tens of thousands by radiology departments in hospitals around the world to screen for “CCSVI” in everyone under age 40 so that they can  be treated for “CCSVI” by his “liberation” procedure and presumably prevent MS. Curiously, the description of this machine only appears in the site of the Bulgarian purveyor of “liberation” not in Esaote’s own site. I suspect that Esaote doesn’t want to publicize the use of transcranial Doppler for studying intracranial veins with the Zamboni machine because this technique has never been validated and is not used in legitimate ultrasound labs. Transcranial Doppler has a few uses for looking at cerebral arterial blood flow that do not include trying to image venous flow which would be hard to distinguish from arterial flow, as recommended by the US Agency for Healthcare Research and Quality.

“Settings in which transcranial Doppler ultrasonography (TCD) is able to provide information and in which its clinical utility is established.

  1. Screening of children aged 2 to 16 years with sickle cell disease for assessing stroke risk (Type A, Class I), although the optimal frequency of testing is unknown (Type U).
  2. Detection and monitoring of angiographic vasospasm (VSP) spontaneous subarachnoid hemorrhage (sSaH) (Type A, Class I-II). More data are needed to show if its use affects clinical outcomes (Type U).”

TCCS: “transcranial color-coded duplex sonography”, ECD: “extracranial EchoColor-Doppler”. These two forms of imaging are somehow combined by the special software in the  PC to diagnose “CCSVI”. In other words, this disease can only be diagnosed with Zambonis machine. Zamboni is attempting to patent a disease.

Of course, the only way one can learn to use the Zamboni “CCSVI” machine is to take special training from the master himself or from one of his franchises. The Hilarescere Foundation is Zamboni’s charity, the scientific committee of which doles out money to him and his friends.

Unfortunately for him, Zamboni is unlikely to make much from his machine. Most of the charlatans around the world doing “liberation” don’t bother to do transcranial Doppler to document “reflux” in intracranial veins. Too much hassle. Like Marian Simka in Poland, the scammers just do a fast scan of neck veins with  regular Doppler that shows pulses on the screen and makes swishing noises which seems  to be enough to convince the desperate patient that he/she needs “liberation” @ $10,000. Note that Simka is not doing transcranial Doppler, just neck scanning with a small portable Doppler machine. And there is certainly no computer in sight  to analyze the data as required  by the Zamboni patent application. This patient is even demanding to have stents inserted [more money], so fearful is he of having a “restenosis” and not being able to afford to return to Poland for another “liberation.”

Here is a Zamboni machine that isn’t a hoax.

Posted in angioplasty, ccsvi, junk science, liberation, multiple sclerosis, Zamboni | 4 Comments »

Zivadinov proves Zamboni’s “CCSVI” does not exist

Posted by Colin Rose on January 15, 2011

Almost a year ago at a much heralded news conference Dr. Robert Zivadinov, a Buffalo-based early disciple of Paolo Zamboni, claimed to show some difference in the presence of venous flow patterns in the heads of MS patients compared to controls using special Doppler ultrasound techniques that had never been validated. He never published the details of this study and has apparently abandoned ultrasound in favour of MRI venography which gives an overall picture of venous flow patterns in all head and neck veins. Zivadinov has now published a well-blinded study using MRV in MS patients and healthy controls which shows no difference in venous flow patterns in the two groups. There are almost blocked internal jugular veins in some MS patients and some normal people. But such blockages are insignificant because of the extensive collateral veins and the emissary veins connecting intra- and extra-cerebral venous circulations, as I described in my original response the Zamboni hypothesis.

I quote from the Discussion section of the paper: “We did not find significant differences between MS patients and HC subjects or between RR and SP MS patients in regard to collateral circulation. This is indeed an important finding because it does not support collateral circulation as a compensatory mechanism of CCSVI.” Such “abnormal” collateral flow was a crucial part of the Zamboni hypothesis.

As I said in response to Zivadinov’s first “study” of “CCSVI”, real scientific discussion is not conducted by news conference. Those who thought otherwise should now be convinced that only publications in respected journals following the time-honoured format for scientific communication are worthy of consideration.

With this paper and at least three others showing the same result, we now have overwhelming evidence that “CCSVI” is a fantasy, concocted by Paolo Zamboni, a varicose vein surgeon who convinced himself that he could “liberate” his wife from MS by dilating her neck veins. To date, at least $one billion has been wasted on this myth by desperate patients, granting agencies and governments. No further attention or money should be directed at this farce. All MS patients should refrain from paying for “liberation”, a very profitable scam based on the “CCSVI” myth.

Posted in ccsvi, ethics, liberation, multiple sclerosis, professionalism, randomized trial, Zamboni, Zivadinov | 12 Comments »

Zamboni is incapable of doing or unwilling to do legitimate research into his own “CCSVI” and “liberation” fantasy

Posted by Colin Rose on December 19, 2010

Dr. Alain Beaudet is President of the Canadian Institutes of Health Research and has been trying to navigate between the incessant demands of politicians pressured by desperate MS patients to authorize “liberation” on demand while doing “trials” and the scientific evidence to date showing that “CCSVI” doesn’t even exist.

Apart from exposing more of this political pressure in the Committee hearings, the testimony of  Dr. Beaudet revealed the true nature of Zamboni’s mentality. It is very interesting that Zamboni has effectively dissociated himself from large controlled studies of “CCSVI” diagnosis in Italy by demanding that only he can interpret the images and that he hasn’t received ethical approval or funding for a controlled trial of “liberation”. If Zamboni can’t get ethical approval for “liberation” now, why did the University of Ferrara approve the ethics of Zamboni’s initial testing of “liberation”, even on his wife?  It seems that Zamboni is incapable of writing a successful grant application and that even the Italians are getting a little suspicious of his hypothesis and techniques. I doubt that Zamboni himself will ever do a controlled trial of “liberation”. Why should he? He has gained transient fame and probably fortune by generating world wide hysteria with the tantalizing mirage of an instantaneous surgical cure for MS supported only by YouTube videos of anecdotal miracles. He was very fortunate that his only clinical publication on his hypothesis, an unscientific  concoction of hallucinations, was published, albeit in an obscure journal. He has indirectly compelled real scientists, like Dr. Beaudet and many other legitimate researchers to divert their time and money into dealing with the scientific absurdity of “CCSVI”. So why should Zamboni risk proving himself to be a fraud? When he is proven to be so he will be liable for compensation for the hundreds of millions of dollars wasted on his scam by patients, doctors and granting organizations. Zamboni will eventually  join the ranks of the great medical con men of history in the company of the likes of Dr. Walter Freeman, the ice pick lobotomist.

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Subcommittee on Neurological Disease – Evidence from Alain Beaudet – December 7, 2010

Dr. Alain Beaudet:

I think this is an important point. First of all, Dr. Zamboni was originally part of the very large association studies that involved I think around 20 sites in Italy, and he withdrew from the study. The scientific director of the Italian MS Society told us that he withdrew because he asked that all the images from all the sites be vetted by his own laboratory, which obviously the committee didn’t feel was appropriate. Dr. Zamboni, however, is also applying for a therapeutic trial, a trial this time to investigate the treatment. As far as I know, the study doesn’t have all the funds necessary to be fully carried out. He did receive a bit of money from the province where his lab is, but I don’t know about the status of the ethical approval of this study. He was supposed to receive ethical approval at the beginning of December. I don’t know whether he did receive it.

Do you know? We don’t know.

The last time we spoke to Dr. Battaglia, the scientific director of the Italian MS Society, Dr. Zamboni still hadn’t received the ethical approval for his studies. It was pending, and we were told the beginning of December. What we know, however, is that right now the funding from the province that he’s receiving for that study is not sufficient to carry out the type of study that would be necessary to prove or disprove the efficacy of the treatment.

Posted in alain beaudet, ccsvi, ethics, junk science, liberation, multiple sclerosis, professionalism, randomized trial, Zamboni | Tagged: | 7 Comments »

Majority of Canadians believe Zamboni’s “CCSVI” and “liberation” scam; science education is pitiful

Posted by Colin Rose on December 15, 2010

There is no better example of why the general population should have a good grounding in the basic principles of scientific investigation than this poll. It is a given that when the politicians digest these results and realize the thousands of votes they could gain by appeasing the majority, they will start throwing  hundreds of millions of dollars at Zamboni’s scam regardless of the junk science upon which it is based. Why would they care? They are already throwing money at bariatric surgery, an equally scientifically absurd scam. What’s a few more hundred million to keep the population happy in their world of surgical fantasies. So, prepare to see more of your tax dollars flushed down the toilet of surgical scams.

A Toilet Money Award to all Canadians who think "liberation" treatment for MS is beneficial.

Clearly our primary and high school science courses are failing the population if they readily accept an obviously suspicious, instantaneous cure for a chronic degenerative disease and can’t ask the right questions about Zamboni’s hypothesis and the reason for the  improvement in subjective symptoms in the YouTube videos of some of the MS patients who have been “liberated.”

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Canadians support liberation treatment trials: survey

CTV.ca News Staff

Date: Wednesday Dec. 15, 2010 6:48 PM ET

A vast majority of Canadians believe the federal government should support clinical trials of the controversial “liberation treatment” for multiple sclerosis, and say it should be available in Canadian hospitals for patients who request it, according to a new survey.

In an online poll of 2,011 Canadian adults conducted Dec. 13 to Dec. 15, polling firm Angus Reid found that three quarters of respondents support government-funded clinical trials, while 82 per cent support making the treatment available to Canadian patients.

The poll found that 37 per cent of respondents had seen, read or heard something about the procedure, while another 13 per cent said they were well-informed about the treatment.

Half of respondents had never heard of the procedure.

The so-called liberation treatment has sparked a great deal of controversy over its founder’s claims that MS is not an autoimmune disorder, as most experts believe, but rather a vascular problem that can be treated with balloon angioplasty.

The theory and treatment were developed by Italian vascular surgeon Dr. Paolo Zamboni, whose research suggests that the majority of MS patients have blockages in veins in their necks that prevent blood from draining from the brain. According to Zamboni, these blockages cause toxic levels of iron to build up in the brain, which triggers MS symptoms such as fatigue and paralysis.

Zamboni called the condition cerebrospinal venous insufficiency, or CCSVI, and began treating it with balloon angioplasty to open blocked veins.

Despite Zamboni’s research, and successful follow-up studies conducted at the University of Buffalo, experts have remained skeptical of the treatment based on other research that has failed to prove the liberation treatment’s benefits.

Earlier this year, the Canadian and U.S. MS Societies announced that they will offer $2.4 million in research grants for studies on Zamboni’s theory. But the federal government has said it will abstain from funding clinical trials until further research is completed.

Meanwhile, patients buoyed by Zamboni’s findings are travelling to foreign countries to have the liberation treatment, at great personal expense (and at great personal risk). Some patients have reported complications since returning home. One patient died in October after developing a blood clot around a stent that was put in during a procedure in Costa Rica.

The Quebec College of Physicians has warned patients that further research must be done on the treatment to prove its effectiveness and advised them not to seek treatment at overseas clinics.

But many Canadian patients have returned from outside Canada reporting a vast improvement in their symptoms. And the Angus Reid survey found that many Canadians believe the patients over the experts.

When asked which side of the debate over the liberation procedure they agreed with most, 61 per cent said they side with MS sufferers who have had the treatment and claim it has provided relief. Twelve per cent support the doctors who claim the treatment is unproven and risky, while 27 per cent said they weren’t sure.

The survey was conducted online between Dec. 13 and Dec. 15 and has a margin of error +/- 2.2 per cent, 19 times out of 20.

Posted in ccsvi, liberation, multiple sclerosis, Zamboni | 6 Comments »

University of Maryland solicits donations from desperate MS patients to support Zamboni’s “CCSVI” and “liberation” scam

Posted by Colin Rose on December 5, 2010

A Toilet Money Award to the University of Maryland

The temptation was too great. American and Canadian professional fund raisers and catheter-wielding interventional radiologists around the world have been drooling over the ability of foreign clinics in places like India, Poland, Mexicao, Costa Rica, Bulgaria and Egypt to rake in hundreds of thousands of dollars per week flogging the Zamboni “CCSVI” and “liberation” scam for “treating” MS patients. So fund raisers at the University of Maryland, following the example of those at the University of British Columbia, convinced or, more likely, were convinced by Dr. Ziv Haskal, an interventional radiologist who stands to make many millions of dollars doing “liberation”, to ride Zamboni’s “CCSVI” hysteria to fatten the endowment of the University while giving legitimacy to the scam. UBC is using the scam to raise funds for a new MRI machine that will probably be used for other purposes than trying to diagnose “CCSVI”. But U of M is using the bait of implying that Haskal will actually be doing “liberation”. If so, this will be the first university-sanctioned use of “liberation” other than Zamboni’s University of Ferrara. Neither university is in the top 100 of the world’s universities. Ferrara isn’t even in the top 500.

Perhaps we should not be too surprised. After all, only 40% of the US population accepts the theory of evolution as the explanation for the variety of life on the planet, the most important scientific concept in history; presumably, the majority, 60%, believe in some form of creation or “intelligent design”. If one can believe the latter, one should have no reservations about accepting that internal jugular veins can cause damage to the brain without raising intracranial pressure and even if it did raise intracranial pressure could cause damage selectively to the  slowly-metabolizing, myelin-producing cell of the white matter BEFORE damaging the much more sensitive rapidly-metabolizing cells of the grey matter of the brain. Interventional radiology, while requiring a certain degree of manual dexterity, certainly doesn’t require more than a superficial knowledge of physiology and metabolism and doesn’t preclude a belief in creation.

“CCSVI” is junk science and its “treatment” by “liberation”, dilating presumably blocked neck veins to “cure” MS, is one of the greatest surgical hoaxes in medical history. Performing any medical procedure with no scientific evidence of benefit but with potential risk is grossly unprofessional and contrary to the Hippocratic Oath.

“CCSVI” is the crack cocaine of surgical scams. It has been estimated that at least three BILLION dollars will be spent next year by MS patients pursuing the Zamboni’s mirage, dwarfing other recent surgical scams like “bariatric” surgery.

 

Posted in ccsvi, ethics, liberation, multiple sclerosis, professionalism, surgery, Zamboni | Tagged: | 35 Comments »

Zamboni’s “liberation” scam for MS can kill

Posted by Colin Rose on November 19, 2010

No one would be denied treatment in Canada for a real jugular vein thrombosis if it were causing any specific symptoms such as pain or swelling in the neck. What I gather from the news report is that the only indication for IV thrombolysis was worsening of his MS symptoms which were ASSUMED to be due to a clot in the stent. If one has spent $30,000 on a treatment that one is convinced must be a cure, one is reluctant to accept that it doesn’t work and that relapse must be due to restenosis requiring more “liberation”. Inserting stents into normal thin-walled veins is hazardous. If the vein were torn it would be very hard to repair. Marcial Fallas, the Costa Rican doctor now claims he didn’t want to use a stent. So why did he? Is there the slightest evidence that a stent would have given Mostic “his life back?” How much extra did Fallas charge for inserting a stent?  Is this professional behaviour?

Mostic obviously bled to death internally. Without an autopsy one can never know from which vessel. My guess would be that the stent tore the IJV or the subclavian vein and that he bled into his chest, possibly when clot that might have been blocking the tear was dissolved with thrombolysis.

I predicted such tragedies a year ago when CTV announced this “breakthrough” in MS treatment. Those advocating unrestricted “liberation” on demand now have blood on their hands.

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Man dies after controversial MS treatment, doctor says

By ADRIAN MORROW
Globe and Mail Update

Patient had returned to Canada, but went back to Costa Rica after blood clot developed

A Canadian man with multiple sclerosis who travelled to Costa Rica to undergo a controversial procedure in June died from complications during follow-up surgery, his doctor said Thursday.

Mahir Mostic, a 35-year-old resident of Niagara Region, went to Clinica Biblica in San Jose last June to be given “liberation therapy,” a procedure in which neck veins are opened up, in hopes of improving blood flow from the brain.

The treatment is based on an unproven hypothesis advanced by Italian doctor Paolo Zamboni that MS is caused by poor blood circulation from the central nervous system, leading to buildups of iron. The procedure is not performed in Canada.

Mr. Mostic’s Costa Rican doctor, Marcial Fallas, said he tried unsuccessfully using balloon angioplasty to open up his patient’s vein, before resorting to inserting a stent, a riskier procedure.

“We are not okay with the idea of a stent,” Dr. Fallas told the Globe and Mail. “But he was desperate, he wanted his life back.”

Mr. Mostic, who had been diagnosed with MS three years ago and had difficulty walking, thought it over and opted for the stent, Dr. Fallas said.

At first, Mr. Mostic showed improvement, but his MS symptoms eventually returned. An ultrasound showed his stent was 80 per cent blocked, Dr. Fallas said.

The doctor said Mr. Mostic returned to the clinic in October, and he was injected with medication in a bid to dissolve the clot. The day after the procedure, his blood pressure began to drop and Dr. Fallas suspects he suffered internal bleeding. Doctors tried to find the source of the bleeding, but to no avail. For religious reasons, his family requested that his body not be autopsied, Dr. Fallas said.

Mr. Mostic’s family declined to comment.

Dr. Zamboni’s hypothesis – called chronic cerebro-spinal venous insufficiency, or CCSVI – is highly contentious. While the medical community generally regards MS as an auto-immune disease, many sufferers have undergone the procedure, crossing borders to do so.

Some have reported blood clots similar to those Mr. Mostic suffered, but have had trouble getting follow-up care in Canada, said Diana Gordon, a Barrie woman who was given the treatment at a clinic in the United States in June.

“When [Mr. Mostic] got back, he should have been allowed surgery after-care, it should have been no problem,” she said. “People don’t have the funds to travel to other countries.”

Researchers in Canada and the United States are studying CCSVI, while Saskatchewan has offered to fund a clinical trial to test the effectiveness of the vein-opening procedure.

Posted in ccsvi, liberation, multiple sclerosis, professionalism, Zamboni | Tagged: , , | 16 Comments »

Brad Wall, Saskatchewan Premier – Good Politician, Bad Scientist

Posted by Colin Rose on July 28, 2010

A Toilet Money Award to Brad Wall

It was inevitable. Some Canadian politician was bound to give in to the pressure from the true believers in Zamboni’s surreal “CCSVI” and “liberation” treatment for MS and throw hard earned taxpayer dollars at this seductive myth. Wall wants to do trials to treat a condition which exists only in the imagination of Zamboni and his acolytes. No one else has ever been able to show that “CCSVI” even exists. Thankfully, most Canadians (and Americans) have a better appreciation of the scientific method than the Italians, Hungarians, Poles, Bulgarians, Kuwaitis, and Indians. When was the last time a Nobel Prize in any area of science was awarded for work done in those countries?

I’m glad I live in Quebec and won’t have my taxes wasted on charlatanry.

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Patrick White

From the Globe and Mail

Published on Tuesday, Jul. 27, 2010 3:27PM EDT

Last updated on Wednesday, Jul. 28, 2010 7:17AM EDT

In a striking departure from his political counterparts across the country, Saskatchewan Premier Brad Wall says his government will finance clinical trials of liberation therapy, a contentious experimental procedure for multiple sclerosis patients.

“There isn’t unanimity on the issue, I understand that,” Mr. Wall said on Tuesday. “But … the province of Saskatchewan is willing to play a funding role.”

The move shunts Saskatchewan to the forefront of Canadian efforts to introduce a treatment that has researchers, politicians and the MS community divided over the roots of the mysterious nerve-wasting disease and the pace of Canadian medical research.

While Mr. Wall’s comments serve up an uncomfortable nudge to political leaders elsewhere who have largely avoided the emotionally charged debate, it comes as soothing news to those living with the disease.

“I’m ecstatic,” said Lori Lumax, a 44-year-old Regina resident who was diagnosed with MS seven years ago, shortly after her entire left side stopped working. She has regained use of all her limbs, but her co-ordination and eyesight fail her if she becomes fatigued.

“It’s not an easy disease to live with. For us, you’re considered lucky if you can live a long life in a wheel chair. This creates hope we can do better.”

Liberation therapy has been hotly debated among MS patients since Italian doctor Paolo Zamboni published results of a recent study that posits MS as a vascular disorder caused by vein blockages that lead to a buildup of iron in the brain rather than an autoimmune disease.

By opening constricted veins, he reportedly improved the condition of 65 patients.

“All these years, we’ve been getting an electrician to do a plumber’s job,” said Ms. Lumax. “I’m not saying the neurologists are doing anything wrong, but I don’t want to be on my $2,000-a-month medications forever. The angioplasty could be a way to get off the medication.”

The study results gained instant and fervent traction among MS patients worldwide, many of whom directed their enthusiasm into campaigns to have the procedure adopted by government health agencies.

While Hungary, Poland, Bulgaria and several other countries now offer the surgery – attracting several Canadians at roughly $10,000 per angioplasty – health officials insist the research is still too meagre to warrant full-blown clinical trials.

“This procedure has clearly captured the public’s imagination,” said Paul Hébert, editor of the Canadian Medical Association Journal and a critical-care physician. “But we have very little data to move forward. If this were anything else, any other procedure, we would say that we simply don’t have enough information to allocate people to this potentially risky procedure.”

And that’s what makes Mr. Wall’s comments unique, a very public declaration that Canada’s snail-paced medical bureaucracy should unleash the purse-strings for a procedure that holds the potential of improving thousands of lives. Research funding has been granted to explore Dr. Zamboni’s theory, but clinical trials would signal a clear acceleration in the normal pace of medical study.

“Yes, there is an unusual element here in that one procedure for one disease is being requested by a Premier,” said Dr. Hébert. “He obviously wants the best for his patients and he can’t go it alone. He is effectively calling on the federal government and the provinces to kick in money. And that to me is great.”

But the optics could trip him up. Fast-tracking a specific avenue of research for a specific disease could give a skewed perception of medical priorities, said Dr. Hébert.

“I applaud Premier Wall because he is saying let’s step up evidence-based care and research in the country,” said Dr. Hébert. “But he must remember that there are countless diseases we need research for. If you open the door here, Mr. Wall, we hope you will promote the need for all clinical research all over the country.”

Saskatchewan has the highest rate of MS in the country, making the issue somewhat personal for the Premier.

“There isn’t anybody who doesn’t have a family member or friend who is battling it,” Mr. Wall said.

Even among MS patients, opinions on the radical technique are split. During recent Multiple Sclerosis Society of Canada board elections last month, a voting faction arose with stated aim of closing out candidates who wanted resources increased for research into the Zamboni technique.

Those Canadians who have flown overseas for the procedure admit that, while promising, the angioplasty is not a cure-all.

“I still have patches of numbness, those things won’t go away,” said Duncan Thornton, a Winnipeg resident who travelled to Poland for the surgery in March. “But I have more energy than I’ve had for 20 years. I can play with my kids, I can stand up and do dishes, I can live life like a normal parent.”

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