CMSC Actrims conference kicks off today

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

CMSC Actrims conference kicks off today

Postby Cece » Wed May 29, 2013 7:36 am

http://annualmeeting.mscare.org/
http://annualmeeting.mscare.org/images/ ... agenda.pdf

The only CCSVI topic on the docket is a 45 talk tomorrow by Alex Rae-Grant, MD, of the Cleveland Clinic. The talk is called, "CCSVI: Controversy and Reality."

Among the research highlights:
[...]
New data on cerebrospinal venoplasty treatments

http://www.medpagetoday.com/MeetingCove ... id=5517461
From a press release. Does Dr. Grant have new data on CCSVI treatments? I am guessing this is an overstatement, and the talk will be a rehash of what is already known.
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Re: CMSC Actrims conference kicks off today

Postby Cece » Mon Jun 10, 2013 3:04 pm

http://www.medscape.com/viewarticle/805565
At the meeting, she presented results from a survey showing that, contrary to what many expected, patients with MS who have comorbid conditions are less likely to have the procedure.
A progressive disease course, greater disability, older age, and male sex were associated with greater frequency of venous angioplasty (all P < .05).
The researchers now plan to try to find out where patients with MS go to get the procedure, how much they spend on it, and whether they feel it was beneficial, said Dr. Marrie.

Well, that doesn't blow me away but at least CCSVI was on the ACTRIMS agenda and discussed in what seems like noninflammatory terms.

The fact that they saw an increase in disease activity argues that venoplasty for CCSVI is having an effect in the brain, even though it was a negative effect.

"I strongly believe we should have further research on CCSVI as a concept, maybe switching from the MS population to more normal populations — aging and healthy people who have this problem, and understand what it means," [Dr. Zivadinov] said. "It's not unique to MS, and for sure, the endovascular treatment is not an option that should be done on a clinical basis."

Dr. Zivadinov wants to research CCSVI in populations other than MS? It could help to get CCSVI established as a syndrome in its own right but right now it would be nice to get the association between CCSVI and MS better explored and understood.

The Canadian trial should "prove the point once and for all" in terms of the effect of treatment, said Dr. Rae-Grant. "One way or the other, the Canadian trial will be the ultimate answer in terms of therapeutics, not in terms of whether there are vascular abnormalities, but in terms of whether this therapeutic intervention is something we should be looking to."

How can the Canadian trial be the be-all-and-end-all answer when the doctor who will be performing the interventions has not previously done this procedure? We have uniquely odd stenoses in our jugular veins. Septums and thickened valves. The learning curve is real but in Dr. Traboulsee's study, it has not been taken into account. Launch an RCT in haste, repent in leisure...and when do we get the real answers?
Still addressing delegates during the joint CMSC/ACTRIMS meeting, Dr. Rae-Grant emphasized the importance of not dismissing the possibility that CCSVI really does work.

"What if we're missing something? What if there is a vascular piece to this? What if there's a subset in which this means something? What if we're throwing the baby out with the bathwater?" And what if, down the road, it becomes clear that "we missed it," he said.

Neurologists should not be dismissive of a therapy that a good proportion of their patients are interested in and may even want to try, he added. "We can't throw it out; we don't have the data yet to dismiss it."

Ok, that's decent. There's also that talk of subsets, which seems valid enough in a disease such as MS which has such wide variability. Talking of subsets makes sense if you believe that only a portion of people with MS have CCSVI. If nearly 100% of people with MS have CCSVI, then the subset is pretty much the whole set, although there might still only be a subset of those people who benefit dramatically when the CCSVI is treated. I myself might be in a subset but it's a good subset to be in and I want anyone else who might be in this subset (those with MS with CCSVI who benefit when treated) to know it and know what their treatment options are and to be able to have it. Research needed, cooperation from neurologists needed, funding needed, and the research needs to be done excellently. It's that last part - a lack of excellence - that is the problem with Dr. Traboulsee's upcoming trial proposal, and it really is so close to being what it needs to be.
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Re: CMSC Actrims conference kicks off today

Postby 1eye » Tue Jun 11, 2013 6:18 am

Talking of subsets makes sense if you believe that only a portion of people with MS have CCSVI. If nearly 100% of people with MS have CCSVI, then the subset is pretty much the whole set, although there might still only be a subset of those people who benefit dramatically when the CCSVI is treated. I myself might be in a subset but it's a good subset to be in and I want anyone else who might be in this subset (those with MS with CCSVI who benefit when treated) to know it and know what their treatment options are and to be able to have it...


I am not sure what you mean by "if 100% of people with "MS" have CCSVI". What part of "100% specificity" do you not understand? Dividing and conquering pwCCSVI is like Paul McCartney announcing he will no longer be a Beatle. Shut the barn door will you, smells like horses used to be in here.

...and the research needs to be done excellently. It's that last part - a lack of excellence - that is the problem with Dr. Traboulsee's upcoming trial proposal, and it really is so close to being what it needs to be.


Sorry to have to say, but you will never be able to look to people in Canada for this kind of answer. No one in this country is qualified to give it, nor would they be believed after their performance to date. There are pockets of people who have tried, but the federal government has managed to turn Canada into more of a psychotically-driven third-world backwater than anyone can imagine.

My brother sent me an interesting photoshopgraph yesterday, entitled "The Helicopters are Waiting." No Cormorants are available at his time...

Image
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Re: CMSC Actrims conference kicks off today

Postby Cece » Tue Jun 11, 2013 8:43 am

1eye wrote:I am not sure what you mean by "if 100% of people with "MS" have CCSVI". What part of "100% specificity" do you not understand? Dividing and conquering pwCCSVI is like Paul McCartney announcing he will no longer be a Beatle. Shut the barn door will you, smells like horses used to be in here.

Well, yes, but there have been many different reports with many different degrees of specificity. This was presented at a neurologist conference, so I try to put on my headache-inducing think-like-a-neurologist goggles. It's a stretch for them to consider than even a percentage of MSers have CCSVI and even a percentage of those who do could be having symptoms or disease worsening caused by the CCSVI.

Even among CCSVI patients there may be subsets: bilateral jugular stenoses, unilateral, jugular plus azygous, early stage CCSVI, advanced CCSVI, intraluminal CCSVI, external compression CCSVI? I am in favor of attempts to systematize, organize and understand if no one is left out of the opportunity to be treated.

Sorry to have to say, but you will never be able to look to people in Canada for this kind of answer. No one in this country is qualified to give it, nor would they be believed after their performance to date.

I suppose I am judging Canadians based on those whom I have known, which include you and other TiMSers and Dr. Cumming; perhaps my opinion of Canadians is abnormally high. :wink:
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Re: CMSC Actrims conference kicks off today

Postby 1eye » Wed Jun 12, 2013 4:42 am

Well, yes, but there have been many different reports with many different degrees of specificity. This was presented at a neurologist conference, so I try to put on my headache-inducing think-like-a-neurologist goggles. It's a stretch for them to consider than even a percentage of MSers have CCSVI and even a percentage of those who do could be having symptoms or disease worsening caused by the CCSVI.


There are two kinds of variables: different phenotypes of "MS", and different causes for CCSVI. I think the percentage you mention is supposed to be:
A progressive disease course, greater disability, older age, and male sex were associated with greater frequency of venous angioplasty (all P < .05).
us older farts, again. The devil you say! P<0.05? Well, time to give up! Can't argue with P< 0.05.

Looks like only a tiny subset of pw"MS" get venoplasty, so I guess we can forget that, except for sending the lawyers after the Canadians who dared join the Coalition of the Willing-To-Give-It-A-Try. We'll leave it for others to figure out what portion of the pwCCSVI that is, shall we? Such as maybe Dr. Zivadinov?

But I can only get the abstract. Perhaps you can tell me if there was only RR"MS" in the not-normal group. That would be a turn-around. What other definitions of specificity are you allowing?

Does anybody listen to the "neigh" side anymore? I don't think minds that are so made up are going to be changed.
Last edited by 1eye on Wed Jun 12, 2013 4:28 pm, edited 1 time in total.
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Re: CMSC Actrims conference kicks off today

Postby erinc14 » Wed Jun 12, 2013 8:16 am

perhaps my opinion of Canadians is abnormally high.

LOL!
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Re: CMSC Actrims conference kicks off today

Postby Rogan » Wed Jun 12, 2013 8:32 am

Wow, decades long trained doctors. The cream of the crop. The wisest of the wise. And nowhere. Not one mention of the big fact.

“Hey we are Neurologists. We get hammered with every damn symptom out there…My head hurts. I have a tumor. I have dementia. I am lost. I am crazy”

These poor neurologists have to be responsible for every freaking head in the world. So along come a vascular scientist and he thinks he may be able to help some of these sick people.

The only possible plausible honest statement any of them can make is this.
"I am not a vascular expert, it would be beyond my pay grade to comment on these subjects. If it indeed turns out that MS is a vascular disorder I am so thankful that sick people will have another avenue to pursue. Now let me go back to earning a living on every other human in the world with problems in their brain."

Why can't they make this announcement? Who pays these peoples salaries?
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Re: CMSC Actrims conference kicks off today

Postby cheerleader » Wed Jun 12, 2013 10:35 am

Here's who pays their salaries, Rogan. They're all in bed together.
Just in case we've forgotten a bit o' history with this group--the Consortium of MS Centers was implicated in a huge pharma payola scandal a couple of years back. Merck Serono was fined 44 million for paying fees to doctors who prescribed Rebif.


The Serono Laboratories and EMD Serono units allegedly made payments to doctors for hundreds of speaker training meetings and programs, as well as payments for attending consultant, marketing and advisory board meetings, all at upscale resorts and other locations, the feds allege in a statement.

The source of the charges came from a whistleblower lawsuit filed by Tim Amato, who was hired by Serono as a regional business director in 2003. He had complained internally about so-called 'funneling' of payments of as much as $25,000 and $30,000 to doctors who wrote a lot of prescriptions for MS meds. The drugmaker 'funneled' these payments through the Consortium of Multiple Sclerosis Centers, a non-profit that educates the public about MS, according to the whistleblower lawsuit (read it here).

http://www.pharmalive.com/merck-serono- ... ack-charge

yeah, this is going to take awhile,
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Re: CMSC Actrims conference kicks off today

Postby Cece » Wed Jun 12, 2013 11:44 am

Dangit that's depressing history. I remember the scandal but not that it was CMSC.
It can sometimes be challenging being both a pwMS and a rosy optimist who believes the best of organizations and people.
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Re: CMSC Actrims conference kicks off today

Postby 1eye » Wed Jun 12, 2013 3:30 pm

Cece wrote:Dangit that's depressing history. I remember the scandal but not that it was CMSC.
It can sometimes be challenging being both a pwMS and a rosy optimist who believes the best of organizations and people.


Oops. I wondered what was in those brown envelopes. Not. Didn't they always say they were supported by "unrestricted" grants from "youknow"? It was CMSC but the charges were not pursued because of the power of $40M. Conclude what you will.
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Re: CMSC Actrims conference kicks off today

Postby 1eye » Wed Jun 12, 2013 3:41 pm

Rogan wrote:Why can't they make this announcement? Who pays these peoples salaries?


Come on now. Remember your Golden Rule. Innocent until proven. Not a big fact until then. Or any other size.

"A proof is a proof. What kind of a proof? It's a proof. A proof is a proof. And when you have a good proof, it's because it's proven." - Jean Chretien, our former Big Cheese.
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Re: CMSC Actrims conference kicks off today

Postby 1eye » Wed Jun 12, 2013 4:02 pm

I am not a vascular expert, it would be beyond my pay grade to comment on these subjects.


Pretty feeble. But then we knew nerves don't need blood.

BTW I think I recently read in an anatomy text that the hippocampus nerves are "exquisitely vulnerable" to hypoxia because of I forget why, and it was only a passage on stroke, anyway... :?: :?:
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Re: CMSC Actrims conference kicks off today

Postby PointsNorth » Wed Jun 12, 2013 5:48 pm

Merck-S made $11B last year. $44 million wouldn't pay for exec concierge services! Probably didn't even get talked about at the water cooler. At least the whistle-blower is driving a german car now. 8)
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Hurry up and wait.
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Re: CMSC Actrims conference kicks off today

Postby CureIous » Sat Jun 22, 2013 12:13 am

I'm humored by how conspiracy theories are all the rage now, but 2009-10, our main thrust was to cuddle on up with the neuros, lest our CCSVI theory not get legs, to get them all on board, and any talk or even hint of treachery from the head tinkerers side of the aisle was dismissed, pooh poohed, and discouraged as bad for business.

My my how times have changed, welcome aboard.
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Re: CMSC Actrims conference kicks off today

Postby cheerleader » Sat Jun 22, 2013 7:28 am

I think I've always been pretty consistant on questioning conflicts of interest, Mark. I'm not a conspiracy theorist, just a fact seeker. Not sure who your comment is directed to.
This is from 2 years ago.
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I hope you remain well. Jeff's still going strong, four years now....his gray matter is "normal" and atrophy is reversed.
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