Canadian experts & MS Society dismiss CCSVI therapy

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

Postby fogdweller » Tue Aug 31, 2010 3:19 pm

scorpion wrote:Once again the reason they are calling for a hold on trials is because people much smarter than you or I see problems with Zamboni's theory. No one is calling for an end to CCSVI trials but they are expressing caution in moving forward because so far there has been NO OVERWHELMING EVIDENCE SHOWING THAT CCSVI IS RELATED TO MS. There has been a lot of anecdotol information but no hard science. Doctors and Researchers use scientific facts to make decisions because that is how they have been trained. The problem is not the NMSS, neurologists, etc, it is that no one has been able to replicate Zamboni's original resuts or really even get close to his findings of 100% correalation between MS and CCSVI.


Actually refusing to do any scientific trials because there is not already scientific evedince wouod be so stupid no one could rationally support that. However, all this recommendation says is that it is too early to fund a pan Canada trial sincce there are ongoing smaller studies that will hopefully give good evidence of saftey (probably not an issue, except maybe stents) and efficacy (still very much up in the air.) I hate to admit it (hate it,hate it, hate it) but that is probably correct since even Canada has to allocate its limited MS resources where current evidencs shows it will do the most good. Those of us that believe in CCSVI think that is where the $$ will do the most good, but if I were making the decision, I would probably do what they recommend right now.

There are lots of trials beginning (Yeah!!!) and hopefull within the year Canada may be in a position to reverse this decision.
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Postby Stacemeh » Tue Aug 31, 2010 5:11 pm

1. Effective immediately, to establish a scientific expert working group made up of the
principal investigators of the seven MS Society-sponsored studies (four from Canada and
three from the US), scientific leadership from CIHR and the MS Societies, and a
representative from the provinces and territories, to monitor and analyze preliminary and
final results from these studies, as well as from other related studies from around the world
related to venous anatomy and MS. The first meeting of this expert working group should
take place in this calendar year.


Rarely does any government organization say "effective immediately."

Yell at me if you wish, but I think we need the truth and in the big picture this is a tiny step in the right direction.

(I just wish they would step faster. :? )
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Postby TMrox » Tue Aug 31, 2010 5:30 pm

The report says "There is an overwhelming lack of scientific evidence on the safety and efficacy of the procedure, or even that there is any link between blocked veins and MS.”

If the want more scientific evidence.. well we need more research, more clinical trials. They need to notice the elephant in the room. Plenty of people have been treated for CCSVI and will continue to do so, regardless of their 'expert' opinion and warnings.

If they trully want to stop what in their eyes is nonsense, then do research. Their 'expert' opinion is just pure thin air otherwise.

Rox
Diagnosed with Transverse Myelitis in December 2008. Inflammatory demyelination of the spinal cord (c3-c5). No MS, but still CCSVI.
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Postby CureIous » Tue Aug 31, 2010 6:09 pm

TMrox wrote:The report says "There is an overwhelming lack of scientific evidence on the safety and efficacy of the procedure, or even that there is any link between blocked veins and MS.”

If the want more scientific evidence.. well we need more research, more clinical trials. They need to notice the elephant in the room. Plenty of people have been treated for CCSVI and will continue to do so, regardless of their 'expert' opinion and warnings.

If they trully want to stop what in their eyes is nonsense, then do research. Their 'expert' opinion is just pure thin air otherwise.

Rox


I think they'll finish "studying the studies" about the same time they finish studying the AI model. I agree with the above comments that this is just stall tactics. They aint dummies. I recall a period not too long ago where the main course was NMSS flambe, for not being able to correctly spell CCSVI, let alone define it or study it. Then they agreed to study it, to the applause of many. Until it was discovered they weren't really doing much more than handing it back to the neuros to toy around with as a pet project. They then state:

10) When will we see results from these studies?
The studies are two years in length and researchers expect to publish results in peer reviewed scientific journals as outcomes are established. The timing of data analysis, peer review and publication can vary widely and thus it is not possible to predict when results will be available.

As part of our commitment to keeping people with MS and the public informed of progress, researchers will be asked to provide 6-month interim updates to the National MS Society on their grant progress. We will post information as it becomes available.

The U.S. and Canadian MS Societies are also in discussion with the Multiple Sclerosis International Federation to establish an international CCSVI Research Coordinating Committee to consider CCSVI research that is underway around the world.


Hey, I think that's all great and all. But notice how they are lockstep with the MSS. Time and space, everyone chill out, gonna be years before we even have a clue on what direction to go in, requiring much more research and funding and papers published. That's great too, fund away, study til you drop. Keep those purse strings tight though, wouldn't want any coinage to get lost to concomitant treatment studies while the imaging studies catch up, or use currently treated patients in a simple matrix. They just turned CCSVI into another EAE.

Currently suffering patients have a wee bit less burden of proof than those who desire to have their names set in stone. For now, it is obvious that they must make their own way through the forest. Remember, the NMSS also said they were pushing the funding of studies through in record time, echoing the "effective immediately" statement.

Also in the echo chamber, from the funded studies via the NMSS we have this:

“This project will pursue four overlapped steps to develop understanding of this condition... Validating a reliable diagnostic approach and demonstrating an MS-specific association is prerequisite to any randomized, blinded therapeutic trial of venoplasty for MS.”

Sound familiar?

It all sounds great, the already-funded imaging studies are great and should be done, but the timetable is 2 years, this announcement is once again just echoing and marching lockstep with what the NMSS and MSS have already established as the course CCSVI research will take.

The rest of it is just noise. 2 years, to even begin to discuss doing any concrete interventional studies, if the imaging studies even point in that direction.

CCSVI meets the real world, take one.
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Postby L » Tue Aug 31, 2010 6:15 pm

scorpion wrote:Once again the reason they are calling for a hold on trials is because people much smarter than you or I see problems with Zamboni's theory. No one is calling for an end to CCSVI trials but they are expressing caution in moving forward because so far there has been NO OVERWHELMING EVIDENCE SHOWING THAT CCSVI IS RELATED TO MS. There has been a lot of anecdotol information but no hard science. Doctors and Researchers use scientific facts to make decisions because that is how they have been trained. The problem is not the NMSS, neurologists, etc, it is that no one has been able to replicate Zamboni's original resuts or really even get close to his findings of 100% correalation between MS and CCSVI.


Both Dr Simka's (as yet awaiting publication) paper, the abstract of which was reproduced here by Erka and Dr Sinan report a percentage correlation in the 90s.
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Postby PCakes » Tue Aug 31, 2010 6:40 pm

...is it 2 years from every time they say '2 years'?

Scorpion,
We really need to work on your self image ;)
... because people much smarter than you or I see problems with Zamboni's theory.
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Postby 1eye » Tue Aug 31, 2010 7:09 pm

scorpion wrote:Once again the reason they are calling for a hold on trials is because people much smarter than you or I see problems with Zamboni's theory. No one is calling for an end to CCSVI trials but they are expressing caution in moving forward because so far there has been NO OVERWHELMING EVIDENCE SHOWING THAT CCSVI IS RELATED TO MS. There has been a lot of anecdotol information but no hard science. Doctors and Researchers use scientific facts to make decisions because that is how they have been trained. The problem is not the NMSS, neurologists, etc, it is that no one has been able to replicate Zamboni's original resuts or really even get close to his findings of 100% correalation between MS and CCSVI.


Maybe nobody you know. People smarter than I or you are actually performing this procedure and having great success. It is even working on little old me. Oh, yeah, I forgot, the placebo effect. So the CMA is telling the government not to do Liberations? Or is it just those well-known experts at the helm of the 'MS" society.

I will agree strongly with anyone who says it has no effect on that easy-to-treat-when-nothing-really-helps imaginary disease 'MS". But it sure helps CCSVI, and some other congenital malformation conditions like M-T.

The government of Canada is run by a bunch of George-Bush loving has-beens who don't know an association from a society from a hole in the ground.

If it were not for anecdotal information, and of all things pure reason, we would not know the earth isn't flat, and Neil Armstrong might still think the moon is made of green cheese.

There has been no overwhelming evidence acceptable to those as whom there are none so blind. This includes Conservative Party Politicians and MS Society drug pushers.

There is no proven association of 'MS' with anything but post-mortem examinations, therefore it cannot be definitely diagnosed in live persons.
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Postby Direct-MS » Tue Aug 31, 2010 7:16 pm

The recommendations of the MSSOC/CIHR committee are not surprising or unexpected. MSSOC and the neurologists are dead set against CCSVI for obvious financial reasons (10 billion of them). This committee was arranged by MSSOC and was filled with neurologists and importantly not a single person on it had any experience or first hand knowledge of CCSVI. It is simply one more delay tactic to push CCSVI treatment far into the future.
What bothers me is that persons with MS keep supporting MSSOC. I realize there are blatant apologists for national MS societies on this site and I just hope most people see through their blather. If people want to have CCSVI treatment available in Canada in the next five years, then funding must be directed to organizations which will fund CCSVI treatment research. MSSOC has clearly shown they will do everything they can to prevent such research from happening.
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Postby 1eye » Tue Aug 31, 2010 7:38 pm

oreo wrote:"...I really would like that this smart people present their reasons why not to fix a stenosed vein. "

It's really very simple frodo:

If it ain't broken, don't fix it !

So far there is zero accepted proof of any kind that these 'stenosed' veins are in fact any real problem. That is in fact the first thing that has to be researched and solved. Then we move on.


BS. Lots of people accept that these findings and anecdotes are TRUE and FACTUAL. Rather than following the money, it is possible to prove the CCSVI hypothesis by merely examining the interests of those non-patients who argue against it. In fact, that should be the subject of scientific investigation.

The reason the MS Society figures so large in this statement (see list of names) is that they are bent on extending their studies and only their studies, using the fabled additional $10M in the control of the CIHR/Health Canada. They would have to do a lot more 'MS' 'fund-raising' to get that kind of money, and it might be embarrassing for Biogen, etc. to just *give* it to them.

Sure, we'll do a test. We'll tie off *your* jugulars and see what develops. And since we *know* it ain't broke...
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Dismissing the link - denying we have MS

Postby Oakley » Tue Aug 31, 2010 9:42 pm

As someone who has had MS for 12 yrs and been very lucky compared to others - I find it unbelievable that we have reached a point where we must hide the fact we have MS to further investigate a health issue which would normally require further assessment and corrective measures.

With this announcement anyone with MS would be wise not to tell anyone they have such - I beleive that this maybe the most effective course of action - if the "MS specialists" see no link or need for further study than why don't we support them in stepping back from this area of study - that way they need not waste their time on such a "risky" "unproven" course of treatment.

We need to engage and support vascular and circulatory specialists - I have no issue in seeking corrective options recommended by such specialists. Honestly if in Canada I could get this treatment for this specific deficiency who cares if it helps to improve symptoms previously I and others attributed to MS. Let the academics debate all they want but people with MS need to focus on having this corrective procedure available to those with such deficiency. To continue to fight about how it could or may be linked to MS is now a lost cause - there is too many with a vested interest digging in their heals. Unfortunately these are the folks who should be supporting their patients with exploring alternatives to dealing with issues they face - I remember my specialist telling me MS does not cause pain - ok I am fine with that - maybe it is something else - could it be CCSVI maybe? - do I care? NO - I just want to explore all available options to improve my overall health - I cannot realistically be so narrow minded to only focus on curing my MS.

When I am asked if I have MS I now say no. When I am asked about my health issues I refer to my CCSVI - as an area I know I can treat - once such is done than I will move onto all my other issues....

Definitely not a great day for Canadians with MS ....
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Postby Stacemeh » Tue Aug 31, 2010 9:44 pm

financial reasons (10 billion of them).


It would be so nice if we could quit trying to compare medicine to the oil and gas industry.


:roll:
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Postby PCakes » Tue Aug 31, 2010 10:19 pm

How did Savoie gather this information? I am a member of the MS society.. no one asked my opinion..

Excerpt:Tue Aug. 31 2010 3:29:07 PM
Experts not sold on controversial MS treatment pioneered by Italian doctor
Steve Rennie, The Canadian Press
Some sufferers of MS and their families have been vocal in their demands that the MS Society of Canada back Zamboni's treatment.

But the head of the society says those people make up just a small group of MS patients, and most are waiting to see if the treatment actually works.

"The large majority -- and the more quiet majority, in terms of social media -- I think look at (the treatment) with optimism, hope, but a dose of skepticism," Yves Savoie said.
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Postby CureIous » Tue Aug 31, 2010 10:50 pm

PCakes wrote:How did Savoie gather this information? I am a member of the MS society.. no one asked my opinion..

Excerpt:Tue Aug. 31 2010 3:29:07 PM
Experts not sold on controversial MS treatment pioneered by Italian doctor
Steve Rennie, The Canadian Press
Some sufferers of MS and their families have been vocal in their demands that the MS Society of Canada back Zamboni's treatment.

But the head of the society says those people make up just a small group of MS patients, and most are waiting to see if the treatment actually works.

"The large majority -- and the more quiet majority, in terms of social media -- I think look at (the treatment) with optimism, hope, but a dose of skepticism," Yves Savoie said.


Thanks for pointing that out, missed that. Okay so they corralled CCSVI into the tiny little microcosm that is Zamboni and made it his baby alone, now they've marginialized CCSVI supporters, and of course have polled the rest of the MS populace (kind of like saying, "what, haven't you heard? everyone is specifically NOT talking about it while they wait for scientific proof!), and came up with some concrete polling numbers to base their decision on.

Okay I see the proper emoticon to the left. :roll:
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Postby Chrystal » Tue Aug 31, 2010 11:08 pm

PCakes wrote:How did Savoie gather this information? I am a member of the MS society.. no one asked my opinion..

Excerpt:Tue Aug. 31 2010 3:29:07 PM
Experts not sold on controversial MS treatment pioneered by Italian doctor
Steve Rennie, The Canadian Press
Some sufferers of MS and their families have been vocal in their demands that the MS Society of Canada back Zamboni's treatment.

But the head of the society says those people make up just a small group of MS patients, and most are waiting to see if the treatment actually works.

"The large majority -- and the more quiet majority, in terms of social media -- I think look at (the treatment) with optimism, hope, but a dose of skepticism," Yves Savoie said.


I missed that too! This should be asked on the MSSC Facebook site. No doubt the one MS patient invited to attend the meeting probably serves on the MSSC Board, has only read CCSVI information produced by the MSSC, and parrots the MSSC's stance.

HAH, "the more quiet majority" sounds so ridiculous. YS, should stick to saying he is "unaware".
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Postby sbr487 » Wed Sep 01, 2010 2:10 am

At this point MSS wants to spend money to de-sell CCSVI, thats okay.
But let them not go to govt ask money saying they represent MS patients.
A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die and a new generation grows up that is familiar with it
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