Thursday, June 24, 2010

The CCSVI mythology

Thank you for visiting my blog. If after reading this page, I hope you will have an opportunity to scroll back up here to the top and follow this link to another page that I think has valuable information:

"I worry that, especially as the Millennium edges nearer, pseudo-science and superstition will seem year by year more tempting, the siren song of more sonorous and attractive."

- Carl Sagan

How fitting I found this quote of Carl Sagan's to be especially relevant to the subject in this posting. And on this subject I know this posting is going to upset many people in the MS community that are looking for an easy solution to cure MS. But sometimes the truth (or in this case, the facts) hurts. This page reflects my opinion along with some rational scientific interpretation about CCSVI since this is currently all the rage in the MS community. If you have a sensitive disposition and are unable to listen to other points of view, please stop reading now. I don't mind if others have a different opinion. I'm not going to try to force my opinion on anyone else that does not agree with me. If you have MS, are only looking for the cheap & easy cure solution (a stem cell transplant is neither), please don't read my blog. You'd be better off going somewhere else to get your info because I like to use science as my tool for finding a cure. And as a scientist, chasing the latest "fad" cure is not something that I do.

So for those that don't know about CCSVI, it stands for "Chronic CerebroSpinal Venous Insufficiency." A term and theory invented by Dr. Paolo Zamboni (not the same guy that invented the ice scraper). Zamboni is an Italian vascular surgeon, and as the story goes he was looking for a way to cure his wife of MS. So he decided to fall back on his area of expertise (which has nothing to do with immunology) and look for a "vascular" cure for MS. He purportedly theorized that MS is caused by a lack of blood drainage from the cranium resulting in an excess of Iron contamination of the nervous tissue which thereby causes cellular damage. So his easy (and less expensive) solution to the problem has been to do outpatient angioplasty (or alternatively a stent insertion) of the jugular return vein from the cranial cavity and thereby lessening the Iron exposure to the nerve tissues.

Here's a description. . . .

This treatment is also euphemistically called "the Liberation Procedure." But it won't liberate anyone from multiple sclerosis. The only thing it will liberate is money from your wallet for an ineffective and possibly dangerous procedure (people have died in the course of receiving this treatment).

But don't take my word for it. . . . . The top Germany NGO on MS has already issued a statement on the subject of CCSVI; "In our case, the lack of scientific Zamboni et al. study results did not present a sound scientific methodology and are therefore worthless and even ethically questionable." Ouch! Additionally, the Multiple Sclerosis Society of Canada (MSS) was quoted to say “. . . . . at the present time there is insufficient evidence to suggest that this phenomenon is the cause of MS.” According to Dr. Paul O'Connor, a neurologist at Toronto's St. Michael's Hospital "There is not a shred of real evidence anywhere that messing around with these veins does anything to help MS patients." The United States National Multiple Sclerosis Society (NMSS) has not yet issued a definitive statement on CCSVI because, I believe, they don't want to risk interrupting any funds from disaffected donors. Probably a wise business move for
thier own benefit.

This first report succinctly lays out the facts of the fallacy. . . .

Massive study disputes Zamboni theory of multiple sclerosis

"David Hafler, professor and chair of the neurology department at the Yale School of Medicine, said it’s “shameful” so much attention and investment is being placed on an idea that is simply not true in light of findings about the immunological roots of the disease."

Zamboni MS vein theory debunked by study

Concerns about controversial MS [CCSVI] treatment (BBC)

". . . . . seven published studies by independent researchers have failed to back up Zamboni's findings.

Some of those research teams have suggested that what he interpreted as abnormalities were in fact normal and harmless anatomical variations found in everyone."

And a BBC follow-up video:
Concerns about controversial MS [CCSVI] treatment (BBC)

"A new study provides more evidence that multiple sclerosis (MS) is not caused by a blood vessel condition [CCSVI], as some research has suggested."

"Based on those findings, Marder's group said MS patients should not undergo surgery to open up those blood vessels."

And a recent informational article based on info from the well respected Annals of Neurology. . . .

New Studies Question 'Venous Congestion' as a Trigger for Multiple Sclerosis

BOSTON -- August 2, 2010 -- Two new studies challenge the controversial hypothesis that venous congestion -- chronic cerebrospinal venous insufficiency (CCSVI) -- contributes to the development of multiple sclerosis (MS). This theory has resulted in many patients with MS receiving experimental endovascular angioplasty, an MS treatment unproven by clinical trials. The studies refuting the CCSVI theory with the first negative medical evidence on the subject are available today in the August issue of Annals of Neurology. . . . .

. . . . . These 2 papers should add a note of caution for MS patients and physicians who are contemplating interventions for possible venous abnormalities based on the findings of Zamboni. . 

. . . . . "Our results call into question the existence of CCSVI in a large proportion of patients with MS," said Dr. Doepp. "We did not find supporting evidence that cerebral venous congestion plays a significant role in the development of MS. . . . . 

. . . . . A second study by researchers at Umeå University in Sweden also concluded that CCSVI does not contribute to the development of MS. . . . . "Our study found no support for using endovascular procedures such as angioplasty or stenting to treat MS patients," Dr. Sundström affirmed. . . . . .

MS genetic discovery casts doubt on [CCSVI] vein theory

"It is now clear that multiple sclerosis is primarily an immunological disease. This has important implications for future treatment strategies.". . . The findings also cast doubt on the recent theory proposed by Italian vascular surgeon Dr. Paolo Zamboni that MS is related to blocked neck veins.
One study published this week in the Archives of Neurology found no significant difference in venous abnormalities between MS patients and healthy controls.

And also the following news articles summary as reported in the health sections of both the Wall Street Journal and the BBC. . . . .

Studies Cast Doubt on New MS [CCSVI] theory (WSJ)

Here is a great article from NPR that quotes one of the biggest medical profession's participants in the whole world of study of CCSVI (having earlier collaborated closely with Dr. Zamboni). And if Dr. Robert Zivadinov of the Buffalo Neuroimaging Analysis Center in New York says it, then this must have important meaning.

Doctor Challenges Cause Of MS And Treatment

"Meanwhile in Buffalo, Zivadinov says his research on CCSVI already shows a clear picture emerging. "CCSVI is not the cause of MS but might be a consequence or a contributing factor to progression, and I think that has to be studied," Zivadinov says."

And from a very important scientific standpoint I think this investigational result from Wayne State University clearly indicates that it is the immune system's T-cells (and their corresponding wayward epitope repertiore) that cause the underlying MS disease progression and relapses. These medical researchers could not have possibly produced this defiinitive concrete data result if the cause of MS were CCSVI:

Researchers publish results settling multiple sclerosis debate

"This work is significant because for the first time we are able to definitively establish a cause-and-effect relationship linking the marked T cells to the development of relapses and show unambiguously that it was the same T cells that mediated relapsing cycles."

And. . . .

Discovery of new genetic risk factors for multiple sclerosis confirms that the disease is of immunological origin [not vascular]

And here is a CBC news segment on the subject of CCSVI treatment people are getting that clearly indicates the procedure is nowhere near risk-free (an abysmal risk/benefit ratio since there is no reproducible demonstrated benefit to be seen here, just the chance of injury or death). . . . . .

Here is a brief lecture on CCSVI from
Dr. Klaus Schmierer, a consultant neurologist at Barts and The London Hospital and Queen Mary's University of London. I especially like his talk because he aptly brings in the issue of The Scientific Method in evaluating CCSVI as a (lack of) cause of MS.

CCSVI - Big Idea Little Evidence [actually, NO direct supporting evidence]

New Genes Confirm Immune System 'Intimately' Involved in MS

 Vascular Theory Takes a Hit - On the basis of this new research, it is clear that MS is "primarily an immunological disease. This is the way to nail this disease and get on top of it," Dr. Compston said. There is also evidence of "an interplay between genes and the environment," he noted.

And I found a blog website written by a highly experienced vascular surgeon (Dr. Colin Rose) that goes into far more detail regarding the myth of CCSVI:

The Zamboni Myth: Why “CCSVI” is Surreal

One of my favorite passages from this site. . . . . .

There are a number of cardiac conditions, such as tricuspid insufficiency and constrictive pericarditis, in which central venous pressure and jugular pressure are markedly elevated over long periods. Never has MS been described as a complication of these diseases.

But the MS Society of Canada has now been intimidated by desperate patients into funding a trial of the Zamboni procedure. I will be surprised if any of these grant applications are approved by a scientific review committee. . . . . If “CCSVI” is causing brain pathology, it must do so via some mysterious, unmeasurable, un-disprovable “reflux”, not amenable to the scientific method.

Zamboni’s myth is not science; it’s a surreal artistic creation in that this process can never be reproduced by other investigators. But all this is really irrelevant anyway because such flow patterns can never damage the brain without causing an increase in cerebral capillary pressure. Any MS patient with a large enough increase in venous pressure to cause red cells to leak out of small veins would have a head that looked like a leg with severe varicose veins; his eyes and tongue would protrude and his face would be very swollen and blue. So, there is no point in even funding a trial of the “liberation treatment” because it is impossible to know what Zamboni actually did and the basic science says that there no point in even trying to figure out what he did. When one doesn’t even know how to reproduce a test, how can one do a clinical trial of it? No more money should be wasted on the Zamboni myth.

We will keep our readers updated on the expansion of the Zamboni myth and it’s inevitable implosion. When it does implode, I would hope Dr. Zamboni will indemnify all patients and insurance plans who wasted money on imaging for “CCSVI” or “liberation.”

CCSVI treatment as a cure for MS is really just junk science that has yet to withstand any valid scientific scrutiny. What started me really thinking about this is the question "for people with hemotomachrosis (a genetic abnormaility that results in EXTREMELY high Iron in the blood), why do they not experience MS at rates greater than the normal population?" Additionally, if MS is a vascular disease then why do immunomodulators (interferon, glatiramer acetate and tysabri) have been proven to slow down the disease for several hundreds of thousands of people taking these drugs around the world who are afflicted with MS? These drugs should otherwise have no positive effect at all if the cause of MS is "vascular" in nature. The answer is because MS is not a vascular disease and is not caused by high Iron exposure to nerve tissue (as CCSVI purports). The putative mechanism of cure for CCVSI treatment and that of hematopoietic stem cell transplantation (for now the only scientifically demonstrated cure for the majority of people that choose to receive the procedure) is completely different. And these very dissimilar treatments can't both be correct. Another particularly interesting supportive piece of evidence that MS is not vascular, but is instead an autoimmune disease is that pregnant women that also have MS that are in the third trimester of pregnancy do not experience MS relapses. This is because the human female body suppresses her own immune system so as not to reject the growing baby from her body. The side effect being that the MS disease activity is suppressed during that same time, as well.

And in addition to all the scientific results already established in the stem cell transplant clinical trials, I now know that a stem cell transplant cured me because of my lack of clinical progression (and clinical symptomatic reversal, as well). I've taken the time to ensure it's definitive, not just a placebo effect.

A friend of mine (fellow MS'er that also has a scientific mindset) astutely made the following rational comments that add a plausible explanation for the existing CCSVI bood flow study results out of New York. . . .

The University of Buffalo published the first U.S. study of
the link between CCSVI and MS earlier this year. The
patients in the study were volunteers, so it's not the ideal
of a truly random sample from the general population, but
it's better than Zamboni's sample. All were examined
concurrently and the examiners were blinded with respect to
the patient's MS status. The result: Among the MSers, 56.4%
had CCSVI, 10.2% were borderline CCSVI, and 33.4% did not
have CCSVI; Among the healthy controls, 22.4% had CCSVI.
Now, this is a strong correlation, but it is far, far from
being cause and effect. And, the results have not been
examined for other contributing factors such as lifestyle.

Let me suggest a hypothesis I find a lot more plausible than
"CCSVI causes MS"; that is, the sedentary nature of many MSers
causes CCSVI. Think about those bulging veins you see on
body builders; I bet those people don't have CCSVI. The ratio
of 2 to 1 CCSVI in MSers vs. healthy controls might just be
the ratio of sedentary people in the two populations.

This supports the "correlation is not cusation" concept.
There are years of work ahead in examining CCSVI and it's
relation to MS. Right now, I wouldn't give a plugged nickel
for the chances of CCSVI being even so much as a minor
contributing factor in MS.

To continue. . . . . there has been no 'valid' clinical study of any type showing any form of lasting patient clinical benefit (other than a temporary placebo effect) for the CCSVI procedure as has been shown in several scientifically-valid clinical trials for stem cell transplantation (which has finished all FDA stage II trial patient treatments and the stage III trial is now in full swing here in the US). Zamboni's initial biased "study" (I hate to even call it that) was performed on a small group of MS patients that had the relapsing form of MS. And because he only included people that were in the middle of a relapse episode, even if no action were taken the MS patients would have improved, regardless. In other words, by design there is no way Zamboni's flawed "study" could have failed. Zamboni erroneously attributed the improvement to his agioplasty "treatment." But it is no mystery that the patients improved because they would have improved no matter what, even if they went untreated! I'm reasonably sure that truly scientific testing results will eventually bear out the flasehood of CCSVI treatment efficacy and disprove the purported merits of CCSVI as a cause of MS.

What this really comes down to is not Dr. Zamboni, or even CCSVI itself. This really is all about the whining constituents of the MS community that are looking for an easy, cheap, fast & painless cure for thier MS. However, such a cure does not exist. MS is not a vascular disease, it's a hematologically-rooted autoimmune disease (just like Rheumatoid Arthritis or Scleroderma). So there is only one clinically-lasting beneficial treatment for MS; it is a procedure that halts the body's underlying autoreactivity that effectively stops the immune system from attacking one's own body and restoring immune self-tolerance. And as of today only a hematopoietic stem cell transplant can do this.

And by the way. . . . for all you paranoid conspiracy theorists out there that think I'm against CCSVI because I'm somehow in cahoots with the drug companies. . . . WRONG!. . . like everyone else receiving a hematopoietic stem cell transplant I have been completely and 100% freed from ever having to again take any immunomodulatory drugs to treat my MS. After 15 years of use I'm now off all MS drug treatment since my stem cell transplant cure. In fact, if the conspiracy theorists were actually correct in their irrational assertion that somehow big pharma is trying to supress a cure for MS, then the pharmaceutical companies would be dead against a stem cell transplant as a cure (which I have seen absolutely no evidence of this) becuase it frees people from continued use of expensive immunomodulator drugs. Making a logical extension of this concept, it's not a conspiracy that is holding CCSVI treatment back as a cure. It's more fundamental. . . CCSVI treatment physically does not work as a cure. Bottom line. . . Even if some people with MS do have veins with ristricted flow patters, that does not mean that it causes MS. Correlation is not causation.

Now don't get me wrong. . . . . I wish that the medical community and researchers could find a quick & easy solution to cure MS. Unfortunately such an easy solution is not here yet (and perhaps never will be). I thank god that I had the opportunity to choose to be cured of MS with a stem cell transplant, hard & expensive as it was. At least I feel I worked for my cure. And that makes it all the more valuable to me.


From: Allen
Subject: re: CCSVI
Date: Friday, June 25, 2010

Hi George,

Thanks for your post on CCSVI. It's always good to hear from both sides. I just stumbled upon your blog and look forward to reading more about your stem cell procedure. I've read some vague accounts in the news so it will be good to get more in depth info.

I'm curious what your thoughts are on the only scientific study on CCSVI (at least that I'm aware of):

"CCSVI prevalence was 56.4 percent in MS subjects and 22.4 percent in healthy controls.

In this large MS cohort, the presence of CCSVI did suggest an association with disease progression"

I feel like there's a lack of evidence to disprove or prove CCSVI, and given this study it is probably something worth more research.


From: George Goss
Subject: re: CCSVI
Date: Friday, June 25, 2010

Hi Allen,

Thanks for your e-mail and insightful comments. I appreciate hearing from someone that can look at both sides of the issue without getting hostile.

And thanks for reading the blog. If you would like to read the beginning, it gives a fairly good summary of what the stem cell transplant cure is all about and overview of what I did. This is the first post (at that time I didn't know for certain that it would cure me. But it has worked out wonderfully for me and cured me, as it does for more than 80% of those undergoing the procedure.). . . . .

Also, your comments regarding CCSVI are very astute. I'm glad to see someone that looks at the information objectively instead of a visceral emotional and irrational reaction that many people in the MS community have. It's troubling to see people treat CCSVI as if it were curative dogma since nothing as such yet exists. (Not even a stem cell transplant.)

Regarding the subject of some correlation between CCSVI and MS. I think you are correct that there may indeed be some relationship between the two. However, the way I look at it it's a matter of "the dog wagging the tail," or "the tail wagging the dog." I believe that it is conceivably possible that there may be some factor of blood flow that is the result of an autoimmune disease, but unlikely to be a causative factor. Looking at the fundamental etiology, it is quite difficult for me to reconcile the already-established causality of autoimmunity for MS and the features of what CCVSI is purported to be by it's advocates.

It would be fantastic if I were wrong. But the already-existing data on autoimmunity as a cause of MS is so very much overwhelming, it's difficult to imagine that all those man-years and clinical trials already expended (and ongoing) to be proven wrong. If that did happen, it certainly would turn science on it's head.

Regardless, you have brought up great questions and it has made me think about this since so many people desire more detail (and actually "answers" that don't yet exist). I will enjoy to look into the specific details of the UB study to dig further. In fact, after I look at it more I think I will even give Dr. Robert Zivadinov at UB a call to ask him some questions myself.

I'll definitely let you know if/when I find out some more info that might be relevant.

Best regards,


Follow up comments by George Goss on June 26, 2010:

No need for me to dig into this any deeper. I read the study design, protocol and results. There is no doubt it was a properly conducted study. But by design the study does nothing to associate "causality" of MS via CCSVI. So all the study indicates is that more study is required. It provides no additional hope of a CCSVI cure beyond the unsubstantiated claims already made by Dr. Zamboni.

Bottom line of the study result summary. . . . . people with clinically definite MS are roughly twice as likely to have narrowed (or slightly restricted) jugular veins compared with people without MS. But the study did nothing to address the understanding or underlying reason of why this occurs (which is the additional study required). And also, why do 22% (a very large and significant number) of people in the study that have resistricted veins not also have MS? I go back to my consistent previous contention that it is more likely that CCSVI has a non-causative association with MS, and is not itself the cause.

So even if CCSVI as a cause of MS were proved correct, based on the results of this
trial only about half of all people with clinically definite MS could be cured. That is far lower than the 80%-85% of MS patients that have already been shown to be cured with a stem cell transplant. So which one is the cure?

Food for thought. . . . . there is a substantially stronger correlation between T-cell loading and MS disability progression than there is with CCSVI and disability progression (which is why immunomodulator drugs have a significantly positive impact at reducing MS progression). So if weighing these CCSVI study results in the most favorable light versus the pharmacological studies of immunomodulators, the preponderance of evidence still stacks up overwhelmingly in favor of MS being an immunological (autoimmune) disease.

Just so I'm not beating-around-the-bush. . . MS cannot be cured by CCSVI treatment, and the latest clinical trial does nothing to dissuade my thinking in this respect.

By the way. . . I'm all for more research on CCSVI. There is clearly some relationsip between MS and restricted jugulat vein(s). I'd really like to know why. More knowlege, not less is always better. It's just troubling to see so many people understandably looking for a remendy for thier MS and and then irrationally jumping on the CCSVI "cure" bandwagon with absolutely NO scientific evidence that it has any positive impact on MS, as is the case today.

From: Rose
Subject: Why say hoax?
Date: Monday, June 28, 2010, 2:19 PM


I came across your blog in my endless search for Internet knowledge and was drawn to your post because of your choice of words. Now, that may be why you used that word but I find it interesting that there are a few people (or perhaps more-I know I don't have all the info) out there that keep arguing against CCSVI calling it a hoax, more specifically to the treatment and its effectiveness. I think CCSVI is not a hoax but an expansion of previous ideas and research by many other people. Some of the research has not been connected to each other and I am unsure how much of it all that Zamboni et al have even reviewed. I do know that it is known in the vascular world that stenosis in the vasculature, anywhere in the body, is not good and needs to be corrected.

I have come across a lot of research and case studies done that points to a link between vascular stenosis and neurological damage. I do not argue for the MS-CCSVI causual link, I have a feeling it is more complex than a simple stenosis issue; but I do see a certain validity to the underlying vascular issues. Especially since so many interventional radiologists are now pulling blood clots from MSers veins.

Of course this raises the question, what was their diagnosis status? Mine is solidified by only 2 of the 3 requirements, I have no lesions. Does that make my diagnosis questionable? Unsure. But many MSers have been diagnosed based on less than what I have been. How many MSers truly have MS? Without perfectly strict rules, it is impossible to say. The McDonald Criteria for diagnosis have been changed over the years and are, well, a bit on the flexible side for diagnosing patients.

Getting back to the hoax issue, what about the diabetic and cancer patients that experience neurological damage symptoms when it is discovered they have developed clots or stenoses in their veins because of long term catheters used for their treatments. Once those veins were cleared, their neurological symptoms were alleviated. These issues are not hoaxes but then they are not linked to MS. (I have that research somewhere, just have to dig it up...if you are interested.)

There is a 2007 paper "The Differential Diagnosis of Multiple Sclerosis" (Rolak & Fleming) that lists as an option for partial diagnosis "Table 2. #11. Cerebrovascular disease" and in "Table 4. #2. Arteriovenous malformation." So here we have another potential for a vascular issue with neurological symptoms and an issue with diagnosis.

There is also the argument for or against the autoimmune part of MS. A 2004 paper "Multiple Sclerosis is not an autoimmune disease" (Chaudhuri & Behan) puts up a convincing argument against. But I am still on the fence as far as which it is or isn't but as new discoveries are made the more we will know.

This 1999 neurosurgery paper "Endovascular Recanalization with Balloon Angioplasty and Stenting of an Occluded Occipital Sinus for Treatment of Intreacranial Venous Hypertension: Technical Case Report" (Neurosurgery, April 1999, Vol. 44, Is. 4, ppg. 896-901) is an extreme case, but shows that such stenoses do cause neurological problems. Would it not be safe to say if such a stenosis were gradual, say over a period of years even decades they could also create such damage and symptoms?

Basically, why say hoax when it really is an issue of disease relationship. Perhaps Italy is right in separating CCSVI from MS? There is still so much to learn and discover in all of this.

I enjoyed reading your post, I hope my terribly longwinded response did not bore you too much.


From: George Goss
Date: June 29, 2010

Greetings Rosie,

Thank you for you message. All of your comments are lucid, relevant and make complete sense to me.

And first off. . . . thank you for highlighting my use of the word hoax. Now that I have thought about it the word got close to my intent, but was not precise enough. I have changed the blog title to reflect a more precise nomenclature. I use the word mythology because there is absolutely no curative data for CCSVI treatment of MS, but there seems to be so much irrational belief in it in it anyway. It really makes me wonder why would so many people put their faith into a procedure that has absolutely no demonstrated curative benefit when stem cell transplantation shows such good curative results?

And regarding your note of vascular causes of neorologic problems. I agree, I'm certain there are a great number a syndroms associated with vascular stenosis (such as diabetes). I just feel confident that MS is not one of them. And for one reason. . . . there is so much immunological clinical trial data developed so far that squarely puts autoimmunity in the spotlight as a cause (or "action," if you will) for MS. Combined with the dearth (non-existence, actually) of CCSVI causal data, this makes me defer to what has already been shown with "real" curative stem cell end-point data. CCSVI does not fall into that category whereas stem cell transplantation does. It appears to be a serious uphill battle if CCSVI is to displace the immunological model as the etiology for MS. And that means beating an 80%-85% cure rate that stem cell transplantation has already demonstrated in multiple scientifically clinical environments around the world.

Best regards,


From: Rose
Subject: CCSVI
To: "George Goss"
Date: Wednesday, June 30, 2010, 8:53 PM

You make a good point on the etiology issue. I am pretty convinced that there is just not enough data to put CCSVI at the top of the causal list for MS. Or even in the top ten; but that remains to be proven definitively.

I think stem cell therapy is a great option, it just has a long way to go and a huge conservative religious right to overcome here in the US. Mind you, I am not one of those people. I have found that no matter how much you argue that stem cells can come from other sources that are not embryonic, many of these individuals will not allow such things to sway their opposition. They believe that any stem cell research can create a path to embryonic...and well, the argument has no end and I usually just find a reason to get out of the conversation. :)

I must also say I have an issue with the term "junk science" for Zamboni's work; but perhaps that is how all different opinions and out-of-the-box research is described until there can be a significant amount of verifiable corroborating evidence. What about the Australian pair that discovered a bacterium as the source of peptic ulcers?

"His work was not received enthusiastically. In Marshall's words, "When I was criticized by gastroenterologists, I knew that they were mostly making their living doing endoscopies on ulcer patients. So I'm going to show you guys. A few years from now you'll be saying, 'Hey! Where did all those endoscopies go to?' And it will be because I was treating ulcers with antibiotics."

Should be an interesting next few years of research for and against CCSVI.

I wonder, how do you feel about all the hubbub in regards to MSers who have had the angioplasty and are experiencing significant changes to their MS symptoms? Do you also feel that the personal experiences are a result of the placebo effect? If so, what does that say about our MS symptoms that they can be fixed with a placebo and not the drugs that we take daily? Or is it all just smoke and mirrors?

I have to admit, I am quite amused by the next stage in BNAC's study involving the 'fake' angioplasties they are reporting they will include in their study. How exactly do you fake a catheter going through someone's body and inflating a balloon in their neck? We have heard, and see, so many accounts of the angioplasty procedure that we are completely prepared in what to expect. I think a medical procedure such as this one cannot possibly be faked. We shall see what happens next.

On another note, my father is from Chile and he tells me they are doing great things down there with stem cell research and treatments. This he learns from his sister who still lives there.

How exactly did you receive stem cell therapy? And please forgive me if you have posted details in your blog, feel free to let me know and I will dig deeper into your posts.


From: George Goss
Subject: CCSVI
To: Rose
Date: Thursday, July 1, 2010, 11:04 AM

Hi Rosie,

Having a discussion with you is nice because you have so many great points. I hope you won’t mind terribly much if I bounce some of my observations and opinions off you based upon your comments. . . . . . .

- Stem cell transplant therapy, just like all medical therapies, does have a way to go before it is finally accepted as putative. However, it's just now in the final stages of FDA phase II trials with phase III trials planned. Based on an extrapolation of this schedule, I believe it's entirely possible that a stem cell transplant will become standard curative therapy for MS within ten years. At that point insurance should cover the cost of the (cure) procedure. For now, it has to be paid out-of-pocket. And unfortunately it's not an inexpensive procedure.

- Interesting that you mention embryonic stem cells and the tumultuous controversy surrounding them. Other people also brought up this subject when I told them I was getting a stem cell transplant. But actually, with an autologous stem cell transplant the patient is only getting their own stem cells back. The stem cells do not come from another donor or any embryos. So there's not a lot of controversy here. Interesting that to my knowledge, there is not a single disease currently curable by embryonic stem cells.

- I believe that I appropriately use the term "junk science" to describe Zamboni's original study. The "study" was designed and executed by Zamboni so that it was impossible to fail (meaning that the results are meaningless). That is not science. And in the words of the European science establishment I also believe it was completely "unethical."

- And I'm also familiar with the discovery of Helicobacter pylori as a cause of gastric ulcers. Remarkable work done by the original investigators and my hat's off to them for their perseverance in the face of then-dogma. But even though they were going against the putative beliefs of the time, I'm not aware of anyone calling their discovery junk science. In fact, it is their following of sound scientific principles that eventually led to the acceptance of bacteria-as-a-cause of gastric ulcers. But I think Zamboni's theory and the theory resulting in the H. pylori cure is not comparable. Making Zamboni a martyr does not make CCSVI more real as a cause (or cure) of MS.

- I am also looking forward to CCSVI study results over time. Even though I think it will never result in a cure, I am interested in knowing more about CCSVI's association with co morbidity factors.

- If people with MS seek and receive CCSVI treatment, that's OK with me since it's an individual decision. However, I think any improvement is more likely a placebo effect, than otherwise. And yes, the placebo effect is real, but it's not a cure because it's not lasting. Most people with MS will continue to degrade over time, with or without CCSVI treatment. For those that do get CCSVI treatment, that is setting a lot of people up for some serious disappointment (and waste of their money).

- So far today only a stem cell transplant (also sometimes called a bone marrow transplant) has consistently shown greater than an 80% cure rate for MS (and for several other autoimmune diseases, as well). Any placebo effect has been excluded from those studies. All the study info is public for review. You can see some of the data on my stem cell references page:

- There are two major types of stem cell therapies that are vastly different from each other. The only one that will cure MS is by first harvesting stem cells from your own body and then destroying the bone marrow with high dose chemotherapy. Following this your own stem cells are then re-infused back into your body and then this results in re-growing the bone marrow and having a "reset" immune system that no longer attacks your body. This is what I did and for me it worked fantastically well. I'm definitely cured. However, the other form of stem cell therapy takes stem cells from your own body, and then without destroying the bone marrow the stem cells are re-infused back into your body. This type of "stem cell therapy" is worthless and has no demonstrated clinical benefit at all. There are many companies all over the world offering this treatment to patients just to get money. Sad, but many desperate people go for this treatment looking for a cure, just the same reason I believe people get CCSVI treatment. They hope it will cure them even though there is zero evidence it has any long term benefit.

- A stem cell transplant (the type I received) is a hard procedure (makes you quite sick for a week). But it's not an impossible procedure to endure. Also, it's quite expensive. So how much is a cure for
MS worth? That's a personal decision for each individual.

- You can find out about my stem cell transplant procedure by reading my overview page here:

I'm not pushing this stem cell transplant on anyone even though it is the only cure available today. If you have any questions or comments, I'm always glad to receive your e-mail.

Thanks & regards,

- George

No comments: