Politics, not science, pushing MS treatment

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby CaptBoo » Wed Dec 22, 2010 11:57 am

"While human intelligence is sometimes capable of soaring in it's creativity and expressiveness, much human thought is derivative, petty, and circumscribed."

...Ray Kurzweil
<div>There be no dragons   ...Reese Palley</div>
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Postby malden » Wed Dec 22, 2010 12:21 pm

CaptBoo wrote:"While human intelligence is sometimes capable of soaring in it's creativity and expressiveness, much human thought is derivative, petty, and circumscribed."

...Ray Kurzweil

No more Schopenhauer?
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Postby EJC » Wed Dec 22, 2010 12:42 pm

What is this thread?

Neurologists united in hope of keeping their careers alive?

We get the fact you don't believe in the theory of CCSVI, rather than continue the theoretical (and philosophical) claptrap we're having the procedure on Monday coming....We can then post a little first hand fact.

I have no doubt that all the results will be labelled "Placebo effect" by the usual suspects.

I'd be the first person delighted to see a serious clinical study...but before that even starts, whoever is running it needs to know what they are doing..that's been the problem so far. In the meantime I'm comfortable paying for my partners treatment for a debilitating condition if it improves her quality of life just one iota.

A lot of people in CCSVI need to get their heads together and set a standard procedure, the thing is, I'm not entirely sure they are at that stage yet, they're all still learning.
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Postby malden » Wed Dec 22, 2010 12:46 pm

EJC wrote:What is this thread?

Neurologists united in hope of keeping their careers alive?

We get the fact you don't believe in the theory of CCSVI, rather than continue the theoretical (and philosophical) claptrap we're having the procedure on Monday coming....We can then post a little first hand fact....

Can't wait for 'a little first hand fact'...
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Postby scorpion » Wed Dec 22, 2010 1:45 pm

EJC wrote:What is this thread?

Neurologists united in hope of keeping their careers alive?

We get the fact you don't believe in the theory of CCSVI, rather than continue the theoretical (and philosophical) claptrap we're having the procedure on Monday coming....We can then post a little first hand fact.

I have no doubt that all the results will be labelled "Placebo effect" by the usual suspects.

I'd be the first person delighted to see a serious clinical study...but before that even starts, whoever is running it needs to know what they are doing..that's been the problem so far. In the meantime I'm comfortable paying for my partners treatment for a debilitating condition if it improves her quality of life just one iota.

A lot of people in CCSVI need to get their heads together and set a standard procedure, the thing is, I'm not entirely sure they are at that stage yet, they're all still learning.


EJC you are right on with that comment. If they would follow Zamboni's intial protocol they would have no trouble. Remember Zamboni identified CCSVI in EVERYONE that he treated. Why can he not just tell everyone how he did it and we can move on??? Wow editing is in overdrive today!
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Postby Billmeik » Wed Dec 22, 2010 3:23 pm

underneath this discussion is teetering on a replication arguement which is just stupid. The article site the 2 %worst replications and ignores a dozen others that score much higher. I mean outside simka and buffalo there are the new tests by haake (over 90?%) and some other high numbers.There are lots of good repications, and it's hard to imagine costa rica or bulgaria getting a low score on that front too. I think replications are last years news, onto something intelligent.
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Postby concerned » Wed Dec 22, 2010 4:17 pm

Billmeik wrote:underneath this discussion is teetering on a replication arguement which is just stupid. The article site the 2 %worst replications and ignores a dozen others that score much higher. I mean outside simka and buffalo there are the new tests by haake (over 90?%) and some other high numbers.There are lots of good repications, and it's hard to imagine costa rica or bulgaria getting a low score on that front too. I think replications are last years news, onto something intelligent.


Have these results been published in a peer-reviewed journal?
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Postby CCSVIhusband » Wed Dec 22, 2010 4:38 pm

Can we please get clarification from all parties involved on just what it will take to be "enough" to convince some that CCSVI is legit?

There are too many "rules" and loopholes and points that will NEVER be satisfied it seems ...

I'm serious ... what would it take in your opinion until you see what 96% of this forum's audience sees ...

Clinical trials? of what? Venoplasty has gone through trials ... and has long been proven to be safe.

That CCSVI causes MS? I don't know how that will EVER be proven unless you treat babies or do gene altering to either give CCSVI to babies and watch them develop MS ... or by mouse models (which are coming).

Then that CCSVI needs x treatment? Stents? Angio only ... something non-existant yet ...

Then will it not be enough that CCSVI isn't the same for EVERYONE? (remember there is no all) ...

That CCSVI won't work for SOME people with MS?

I mean, seriously, when will it EVER be enough?

And tell us what that enough is ... PLEASE. Tell us what you'd like to see demonstrated, tested, proved ... and how? If you had your druthers ...

You can't just keep pounding the same nail if you have no suggestions or recommendations ... otherwise it just becomes background noise ... a constant itch that just has to be scratched from time to time - but it's always the same itch ... because we get no suggestions, nothing new, just the same old same.
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Postby concerned » Wed Dec 22, 2010 4:47 pm

I would like to see a multi-center study that gets published in a reputable peer-reviewed journal that shows "liberation" is a viable treatment for MS.

Has there been anything besides the initial Zamboni study that has been published in a reputable peer-reviewed journal?
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Postby CaptBoo » Wed Dec 22, 2010 4:54 pm

I sincerely hope you get that wish Concerned, I really do. I also really think that it will come in time. Many of us with aggressive MS have satisfied ourselves as to the safety of the procedure and choose to be proactive with our disease process and not sit around waiting for people who don't have the disease to determine our fate.

Edit typo
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Postby CCSVIhusband » Wed Dec 22, 2010 4:57 pm

concerned wrote:I would like to see a multi-center study that gets published in a reputable peer-reviewed journal that shows "liberation" is a viable treatment for MS.

Has there been anything besides the initial Zamboni study that has been published in a reputable peer-reviewed journal?



OK ... what if we're not treating MS ... but symptoms that have been lumped in under MS?

What if we're just opening up veins ... with CCSVI ... and it happens to improve "MS" symptoms along the way? Are the centers testing "MS" ... or are they testing whether opening veins impacted symptoms?

Because obviously opening veins impacts symptoms ... not just in "MS" patients, but in general. That has already been proven.

EDIT to say ... what if by the time you have "MS" it's too late to "cure" it? I don't believe that's necessarily true. But the longer the damage, the more likely CCSVI will not necessarily be a cure, but maybe a stopgap potentially. But what IF CCSVI was treated before "MS" happened ... is that proof? And at what point does that statement become ridiculous, because do you test EVERY person in the country for venous problems (and at what age?)


So let's say an MS patient has May-Thurner. And a swollen painful leg due to clots or just a stenotic vein (iliac). Should venoplasty not be performed on that person because we don't know how venoplasty will impact their "MS" symptom of pain? And is it "anecdotal" when the report a relief in "pain" after venoplasty?


regarding published: most trials last well over a year, then the time to write and edit. CCSVI is about 18 months old (at most) ... the first "clinical trial" in the US was Dr. Mehta ... that started less than 3 months ago. Unless you count Kuwait ... it's going to be a while until you get those results ... but they're sure to come.
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Postby Blaze » Wed Dec 22, 2010 5:46 pm

concerned wrote:I would like to see a multi-center study that gets published in a reputable peer-reviewed journal that shows "liberation" is a viable treatment for MS.

Has there been anything besides the initial Zamboni study that has been published in a reputable peer-reviewed journal?


That is exactly what Dr. MacDonald is proposing to do with IRs, vascular surgeons, neurologists and hundreds of patients. Yet, he can't get approval or funding to do so.

The powers that be insist randomized double blind trials are needed. Here, we have a responsible, compassionate and determined physician with decades of vascular experience ready to go with a professional team. But, he's prevented from doing so.

That makes it far too easy for the naysayers to claim the need for randomized double blind trials while resisting one being done. It's a vicious circle. And very similar to what happened to Dr. Schelling over three decades ago.

The difference this time is public knowledge and advocacy won't let what happen to Dr. Schelling happen again. Let's get on with it!
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Postby BELOU » Wed Dec 22, 2010 5:49 pm

Is Sandy really being prevented to do his study or it's just a lack of funding. I don't think he has applied to an IRB in Canada right?
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Re: .

Postby concerned » Wed Dec 22, 2010 5:59 pm

BELOU wrote:Is Sandy really being prevented to do his study or it's just a lack of funding. I don't think he has applied to an IRB in Canada right?


If all the canadians breaking the bank put their money with Dr. MacDonald rather than sketchy medical tourism companies, I'm sure the money would be there, although I don't think that patients should have to pay to be part of a study.
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Re: .

Postby Blaze » Thu Dec 23, 2010 6:11 am

BELOU wrote:Is Sandy really being prevented to do his study or it's just a lack of funding. I don't think he has applied to an IRB in Canada right?


Dr. MacDonald is seeking both IRB approval and funding. Here is the latest directly from him as of late last night.

"We are in the final stages of an IRB approval and hope to have this hurdle completed in one month. Once completed, we will need money."
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