This Is MS Multiple Sclerosis Knowledge & Support Community

MarkW wrote:
Malden and Lyon try to mislead by asking if the same symptoms are found in the general population. So what. This is not relevant to pwMS, who have restricted major veins.

I don't see how that's misleading.

I think what Mark and Cheer are talking about is the need to focus on the patient’s position. It is quite reasonable to take the view that you require more proof as Malden and Lyon and others do. (although I don’t share that view.) The misleading bit is to insist that proof of greater prevalence of CCSVI in patients with MS than in normals must precede testing of the treatment.

Suppose that after two years the 7 trials funded by the NMSS all find no evidence that supports the theory of CCSVI. The total number of subjects in those trials is about 550. At current rates by that time over 10,000 people will have had the treatment, maybe over 20,000. If the evidence from people who have had the treatment conflicts with evidence from the trials do you really think anyone will take notice of the trials?

MS sufferers want treatment and they want to know how effective it is, how safe it is and whether it is likely to help them. The choice they need to make has to be based on the evidence that exists relating to treatment. The best solution to this problem of course is to allow treatment trials as is now just starting to happen.

I can see some advantage in waiting 12 months to see the results of these trials but to follow the dreadful advice persistently given by the authorities in Canada to wait for the outcome of their 7 studies is completely crazy to me. Scientists may still be interested in those results. But whether they confirm Zamboni or not I can’t see anyone else will.

I think the message is simple: make your decision on evidence which relates to treatment don’t get misled by waiting for studies which may well prove nothing.

AMcG wrote:

Suppose that after two years the 7 trials funded by the NMSS all find no evidence that supports the theory of CCSVI. The total number of subjects in those trials is about 550. At current rates by that time over 10,000 people will have had the treatment, maybe over 20,000. If the evidence from people who have had the treatment conflicts with evidence from the trials do you really think anyone will take notice of the trials?

.Scientists may still be interested in those results. But whether they confirm Zamboni or not I can’t see anyone else will.

I guess in the case of CCSVI anecdotol results are way more important and reliable than ones that are objective. So yep you are correct but only in the case of CCSVI. You hit on one of my points from yesterday. What are the point of the clinical trials if no one cares about the objective evidence? It seems that the only thing that objective results have produced in the past is more ammunition for the skeptics. I do not know what we will learn in the next two years even if that many people do get 'liberated". The way the situation is now no clinical trial can prove anything about CCSVI. Anytime evidence points away from CCSVI another "fact" is fabricated to explain it.

CCSVIhusband wrote:It has been proven.

See Buffalo's (blinded study) results where it was greater than 2 people with MS that had CCSVI to 1 without MS that may have CCSVI.

Thank you. You can agree with me now and edit your comment to reflect that proven fact.

I'm not sure what your point is but unless EVERYONE in that blinded study was tested with venous catheter your point was moot anyway.

MarkW wrote:Malden and Lyon try to mislead by asking if the same symptoms are found in the general population. So what. This is not relevant to pwMS, who have restricted major veins.

What you are saying is misleading. I don't know what your definition of "symptoms" is but I have never asked "if the same symptoms are found in the general population".

On the other hand I have repeatedly said that it's essential to determine through equal and accurate testing whether or not the same rate of stenosis affects the general population as people with MS (at this point venous catheter). Athough lots of people are convinced that a specific relationship between MS and stenosis has been shown, it's obvious that the majority of the medical community begs to differ.

MarkW wrote:asking if the same symptoms are found in the general population. So what. This is not relevant to pwMS, who have restricted major veins.

I'm not sure of your reasoning but finding that everyone is equally affected with stenosis would be a game breaker for the theory of CCSVI. Otherwise would be no different than Zamboni saying that "I've noticed that 100% of people with MS have fingernails!" which seems to be pretty pointed evidence until a skeptic points out that there really isn't a specific relationship between fingernails and MS incidence because EVERYONE has fingernails.

I know my comparison seems so obvious as to be foolish, but realistically would anyone seriously consider fingernails to be the cause of MS with it in mind that everyone has them? Then why should anyone continue to think that stenosis has anything to do with MS if it is eventually shown that everyone, MS and general population alike, is equally afflicted with stenosis?

AMcG wrote:It is quite reasonable to take the view that you require more proof as Malden and Lyon and others do. (although I don’t share that view.) The misleading bit is to insist that proof of greater prevalence of CCSVI in patients with MS than in normals must precede testing of the treatment.

To clarify my position, it's not as simple as saying that I'm either for or against immediate clinical trials of CCSVI.

I can't think of a more accurate way to state my position than saying that I'm personally convinced that the cart has gotten so far in front of the horse that there is no choice but to proceed with CCSVI clinical trials.

Reasoning? The theory of CCSVI has already gone viral world wide and there are so many people who have their hopes pinned on CCSVI that there will be hell to pay if clinical trials aren't done post haste. It's also probably fair to say that I'm convinced that things have gotten to the point that, regardless of the results and objectivity of the clinical trials, unless they "prove" the theory of CCSVI, there are a good number who won't accept the results.

Admittedly that is very different than saying that clinical trials of CCSVI are scientifically justified.

I'm convinced that, if it weren't for the world wide web and certain people using the WWW, namely thisisms to extol the virtues of CCSVI LONG before supporting evidence existed, the world wouldn't and shouldn't have heard of the theory of CCSVI until it had proven the tiniest bit of scientific merit by minimally showing a difference in incidence through equal and accurate testing between controls and the general population.

It all really is so simple. Again and again and again it's agreed that venous catheter isn't perfect but is the gold standard, most accurate test available at this time.

Again and again and again we've seen just how fallible the other tests are, yet those most fallible tests are all the controls have been dealt and most often the positive findings of CCSVI ultimately end up being "proven" by venous catheter. That unequal testing method is about as far from "objective science" as possible.

An even easier question we should all ask ourselves....what kind of results should be expected from unequal and inaccurate testing methods because at this point that is the foundation....the "science" behind the theory of CCSVI.

*edited to fix a slew of typos.

Lyon

Your point that normals have not been investigated by catheter venography is a fair one and it is entirely relevant to the question of the link between CCSVI and MS. And scientifically pursuing that relationship may cast a lot of light on the validity of Zamboni’s thesis. That all makes sense and you have made the point many times.

But I have two problems with that point of view. First I don’t trust the scientists who have been funded to do a fair job of that research and I think I have good reasons not to. Second the liberation treatment itself is a bit of an enigma. It was always a bit of a shot in the dark. I think probably even Zamboni was shocked when he found it worked as well as it does. Zamboni has provided in his hypothesis a skeleton of how he thinks this works: how CCSVI effects the brain but there are a lot of details which are not yet there. Amongst other things precisely how Liberation gives some people almost immediate results has not at all been clarified. There have been plausible explanations posted here but none have been investigated. There is clearly still an awful lot to learn about this treatment. That being the case I dare to wonder “What if it turns out that Zamboni’s hypothesis is wrong but Liberation works for a completely different reason?” If that was true then it would be a major blunder to abandon the therapy because the theory wasn't convincing. Proving a link between CCSVI and MS is one thing. What about proving a link between CCSVI and Liberation? And then what about proving a link between Liberation and Improvement of symptoms in MS?

I am not making these points because I think they are true. I think Zamboni will ultimately be vindicated. My point is that at this time there is no necessity to predicate one thing on the other. Lets investigate CCSVI sure. But whether or not there is a convincing link between CCSVI and MS the Liberation treatment should be investigated in itself. For a PwMS the link between Liberation and improved symptoms is the thing they really need to know about.

The group of mainly neurologists which we all know and love who have been instrumental in stopping/delaying treatment and treatment trials in North America and the UK were not being scientific when they set things up the way they have. I know we have differences but I believe Scorpion, Lyon, Malden and the rest of us all want to get at the truth. I don’t believe this group does. They think they know already and they aim to sink Zamboni by any means they can. It is they who are insisting that treatment trials cannot go ahead until they have finished their investigation of CCSVI. They created that link. Yet it is abundantly obvious that there is no good reason for that assertion.

PwMS are not (necessarily) scientists. The details of how CCSVI may or may not figure in the aetiology of MS are irrelevant to them. For PwMS the issue is treatment and how it might help their MS, this is what Mark and Cheer are saying.

So what about the group of neurologists? I don’t think the issue to them is a scientific one. It is simply politics. They have position, power and influence and they are determined not to let Zamboni threaten it.

AMcG wrote: So what about the group of neurologists? I don’t think the issue to them is a scientific one. It is simply politics. They have position, power and influence and they are determined not to let Zamboni threaten it.

Although you and I don't see eye to eye on this, I'm completely comfortable that you've stated your position honestly and sensibly and, were I in your position, maybe I'd see things exactly the way that you do.

It would be awesome if, in the meantime, a very effective and non-subjective imaging process were developed that would eliminate our need for questioning because, although the desire is great for CCSVI to be proved valid in the name of hope, at base I think we all just want to know the truth.

I suppose that previous statement could, but wasn't intended to sound as if it's already certain that CCSVI will fail.

AMcG wrote:...I think the message is simple: make your decision on evidence which relates to treatment don’t get misled by waiting for studies which may well prove nothing.

That's the big problem for me. What evidence which relates to treatment (good as bad) to take as subjective, what as objective, what as false, what as true? Doctors doing procedures also don't have a traced clue... the best we get from them was famouse "rule of third". How to "don’t get misled", as you say so, with all that mess? I am not "Just Do It!" generation ;)

I think that to flippantly dismiss these negative results is to engage in the same tactics about which we complain. If we cry for science we can't whine about the results or make excuses. I guess for no other reason than good sportsmanship and fair play

Make no mistake, I am a CCSVI proponent, but I want the science to be done - fairly and thoroughly. There is no getting around the fact that these results cast doubt on Zamboni's theories. In his study, 100% of the MS patients had CCSVI, and none of the controls (such as they were). Either he did not describe CCSVI clearly and sufficiently enough to allow his experiment to be repeated, there was some fudging of the results, or he came upon a freak streak of MS patients and 'normals'.

Even so, I believe that the Buffalo study also found a much higher prevalence of CCSVI in MS patients. This result also can't be ignored and it
was significant enough to warrant further study. I also draw support from the reported effectiveness of liberation treatments. It may be a case of having an answer to a question you haven't quite figured out now how to ask.

While this may be a thread about the study at BNAC, I've noticed many people citing their preliminary results as if they were the final word. This seems a bit premature. The jury is most certainly still out deliberating. Moreover, I think that it's important to take into consideration the results of the Kuwaiti study in addition to BNAC, Zamboni, et al.

http://www.ccsvikuwait.com/Details.aspx?d=4

Control group N=100 patient without MS

Kuwaiti: non Kuwaiti % ··· 48:52
Male: female % ·············· 25:75
Age min-max ················· 23-57
mean ±SD ····················· 39.7±7.8
Positive Duplex ·············· 7%
Normal Duplex ··············· 93%


Study group N=100 patient with MS

Started colour Doppler screening of neck veins as protocol of Prof. Zamboni

Kuwaiti: non Kuwaiti % ··· 100
Male: female % ·············· 48:52
Age min-max ················· 22-57
Positive Duplex ·············· 87%
Positive MRV ·················· 96%

All successful Angioplasty with satisfactory post balloon dilatation
No complications
All patients reported improvement ( 1 month) :
Improvement or disappearance of Numbness
Loss of Fatigue and increased energy
Improvement of power (foot drop)
Improvement visual acuity (No blurred vision)
Reduced electrical sensation
Memory improvement

NHE

NHE wrote: Moreover, I think that it's important to take into consideration the results of the Kuwaiti study in addition to BNAC, Zamboni, et al.

Of course the term "organized medicine" is a general and uncertain term but I haven't heard and would be interested in what organized medicine thinks of the results released from Kuwait so far.

Personally, I'm far from an expert but it seems to me to be the equivalent of what we usually consider an initial safety study, which is fine, but really is more geared to determine blatant unsafe situations on a small number and isn't designed to test efficacy and data may only hint at possible efficacy

Kuwait wrote:They had only clinical assessment, without, a proper neurological assessment i.e. Document of severity of MS symptoms before and after the procedure with EDSS-FSS- and MSIS.

I've looked and looked and can't find where their information states specific procedures used on controls. If venous catheter hadn't been used on the controls this info is just the same hash on a different plate in addition to sharing the other shortcomings of an initial, small study designed, at best, to hopefully show a tendency towards efficacy.

Others can and will do what they want but, for me, a suitable American comparison is that a friend of mine did a small (5 MS patients, no controls) safety study using swine whipworm ova against MS. Before even starting he told me that if it didn't prove safe or didn't tend to show efficacy he wasn't going to waste the time or money on a phase II.

Point being that in this case of whom I know to be a responsible researcher, initial results tending to show a possible trend towards efficacy and isn't really the kind of information you would broadcast from rooftops.

If the point is nothing more than the Kuwaiti information supports the need for further efficacy studies, I'll agree with that. Reason for high fives, probably not.

Lyon wrote:Of course the term "organized medicine" is a general and uncertain term but I haven't heard and would be interested in what organized medicine thinks of the results released from Kuwait so far.

Oh no doubt, the results will be described as the Kuwaiti study, just as Dr. Zamboni is usually referred to as the Italian doctor. This is the calibre of the "science" amassed to refute CCSVI.

Kuwait wrote:CCSVI: & M.S  ---Conclusion
There is strong link between CCSVI and M.S.
control individuals had only 7% CCSVI (negative in 93%)
MS patient had between 81-96% (with Duplex and MRV)
 
 
MS patients with CCSVI (other studies)
Zamboni 100%
Zivadinov 55% -62%
Mamoon 84%
Simka 95%
Kuwait 96%

Based on these provisional results and the lack of any reported harm from venous angioplasty, efficacy and safety have been demonstrated to the point of warranting clinical trials in my view. These are not the results of a tiny provisional study on a few subjects by a single researcher.

Jugular wrote: Based on these provisional results and the lack of any reported harm from venous angioplasty, efficacy and safety have been demonstrated to the point of warranting clinical trials in my view. These are not the results of a tiny provisional study on a few subjects by a single researcher.

For better or worse, beauty is always in the eye of the beholder.

There isn't any argument that these results warrant further studies by these researchers but it remains to be seen whether these results and their methods draws the interest needed from other researchers.

I honestly don't think so because, for all the talk, it remains to be proven that people with MS are more affected with stenosis than people without MS.

Once that's proven believably, people with throw money at CCSVI research and clinical trials.

I DON'T RECALL TRIALS FOR OPEN HEART BYPASS SURGERY OR A TRIAL FOR FOR STENT PLACEMENT IN ARTERIES??? OR FOR ILIAC VEINS NEEDING STENTS OR ANYWHERE ELSE.

STOP TRIALS AND JUST CORRECT MALFORMATIONS/DEFECTS FOR THOSE WHO ASK FOR IT!!!!!!!!!!!!

IF YOU DON'T HAVE MS AND HAVE CCSVI - WELL, THAT WOULD NOT MAKE A HAPPY CAMPER. WHAT IS IN STORE FOR ME??? ALZHEIMER, PARKINSON, BRAIN TUMORS, ANY PLACE IN BODY WHERE BLOOD IS DEPRIVED IS SUSCEPTIBLE TO TRAUMA - NO BRAINER!!!!!!!!!!!!!!!!!!

BASIC HUMAN PHYSIOLOGY/ANATONY.

THANKS FOR POSTING FACTS - SIMKA'S RECENT STUDY SHOWS 97.1 IN THOSE WITH MS THOSE ARE VERY HIGH NUMBERS -


WHY ARE YOU SCORPION ARGUING AGAINST FIXING -MANGLED VEIN!!!!!!

JUST TREAT THE DYSFUNTIONAL VEINS - PATENT RIGHT AND CHOICE!!!!!!!