This Is MS Multiple Sclerosis Community: Knowledge & Support

When I asked my neurologist at the U. B.C. to be put on the list to participating in the CCSVI research, her response shocked me. UBC has put in the proposal to research twins. Thinking I had misunderstood I reconfirmed that only twins were eligible for the research.

My understanding is that using twins would be to question/confirm that only the twin with MS would have the problem with the veins. If true, doesn’t that mean that UBC is looking at whether it is the “cause” of MS, rather than looking at CCSVI as a treatment. Don’t get me wrong, the question is valid. I just don’t think it is the first question. Why not screen and perform the procedure to improve our quality of life?

Also of note, none of the information UBC has put out mentions it will only study twins. Am I cynical to think that this is misleading when they are asking for private donations?

A week or two ago I was advocating that twin studies should be done!

Twin studies can contribute a lot to research. It's a great way to parse out effects that are genetic versus environmental. This ties in with finding out if CCSVI is congenital or acquired in most cases. Also it'll show if the twin who got m.s. has CCSVI and the twin who didn't get m.s. does not have CCSVI, like you said. This would point strongly to CCSVI causing MS, which would point to the necessity of treating CCSVI.

While I too would prefer treatment studies, not every institution is going to want to go there until the foundation of CCSVI theory is further shored up...and this is a way of shoring up the foundation.

I just wish all the research were done already and could be reading the results.

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"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

What th??? UBC is asking for $500,000 for their research study and it will only involve testing TWIN SUBJECTS where ONE of the twins has MS and the other does not???

What, is that like, twenty subjects in total???

Ok, I actually tried to do the math. Assuming the researchers successfully recruit EVERY SINGLE TWIN SET IN THE ENTIRE PROVINCE with MS/NO MS combination between ages of 18 and 55 thats probably testing about 25 patients with MS.

I thought Dr. Traboulsee / UBC was quoted as saying the research would involve a hundred patients. No where has the UBC team suggested this would be twins only.

This is insanity. The urgent need is **not** to hypothesize whether CCSVI could be the cause or the result of MS. The need **is absolutely** to confirm whether CCSVI occurs in some MS patients and if yes whether treatment of those patients could halt the disease progression or improve their quality of life.

If it helps get the numbers of twins higher, maybe it includes twins in which both have m.s...this might give information such as the one with worse ccsvi has worse m.s.

Just like animal studies and creating mouse studies, twin studies are a usual stage in the research. Wasn't it already common knowledge that the UBC study was still just on imaging/diagnosis and that it's Georgetown where a treatment study is in the works?

I am also not personally planning for the research to be finished before I find someone to image and treat any stenosis I may have.

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"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

The problem with the twin study is that Traboulsee is taking $1M in funding from the donations of MS patients, and their families and communities. And he's using it for a research that won't even come close to answering their question of whether this treatment does or does not help them.

I have a better idea. Take the $1M and send 100 patients to Poland for the treatment. Measure their EDSS before and six months after. Done.

This is an interesting sidenote to twin studies: some cardiac and vascular abnormalities are actually the result of the person being a surviving twin. In other words, what started out as twins becomes a single birth when one of the twins dies in utero and is reabsorbed; that twin's presence may never even have been suspected. In some cases the twin dies *because* of the vascular or cardiac problem that they both shared.

Just thought I'd throw that in here.

I haven't seen anything from UBC that indicates they are studying twins.

Even if that information is correct, I do know for certain they have more than one study planned, so maybe one of them involves a twin cohort.

I am amazed when people suggest research is good only if it helps them directly. What do you expect researchers to do? Ask donors what characteristics they support in the participants?

I would have to say "I only support research on 50 yr old females, MS for 29 or more years, on Rebif, with moderate disability." That's crazy.

I support ALL efforts to untangle MS, if not for me, for the generations that follow.

Those who think twin studies don't help them are simply mistaken, by the way. Twins allow researchers to control a myriad of extraneous variables, like genetics (if identical), home environment (and probably childhood diet), and so on. That means when they find something they are closer to establishing significance to their data and even causality.

Sandra

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National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tinyurl.com/44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tinyurl.com/3wzmkmg</a> ~Facebook</strong><br />

It actually makes good sense to test twins, but I do not believe that is the criteria for the UBC study. I spoke to a neuro at the UBC MS clinic last week (about being in the study), and he mentioned nothing about twins. As a matter of fact, he expressed that nothing had been finalized yet. Beware of minutiae, and disinformation. As someone wrote - 'statistically, one would yield 25 sets of twins with MS in BC' - or 50 people..

My understanding (no deeper than anyone's) is that UBC was going to scan 100, treat 50 with the Zamboni intervention, and if there was a marked improvement of the treated 50, the control group would be given the intervention at the end of the study - on compassionate grounds.

I am reading here at TiMS that there are Canadians getting scans positive for CCSVI, and are getting appt's with vascular surgeons for treatment. We need to pursue this, and let the studies unfold as they may. Y'know, the old end-run...

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My name is not really Johnson. MSed up since 1993

I wonder why no one has any idea of the actual terms for the UBC research project given that its going after a lions share of funding.

And just out of curiousity, I googled Traboulsee and he's listed repeatedly as a collaborator with Dr. Luanne Metz who I consider the Sarah Palin of CCSVI detractors. Her quote in the National Post was hilarious that some MS patients were actually rude when they called her MS Clinic and couldn't get any answers about CCSVI. Indeed !

Dr. Traboulsee is my neurologist. He is thoughtful, intelligent, and an MRI specialist. He is a little unconventional, but he considers things carefully before committing, in my opinion. He has an extensive research history with many, many collaborators. I don't think you can read anything into the fact that he has been on a study with Dr. Metz.

Sandra

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National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tinyurl.com/44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tinyurl.com/3wzmkmg</a> ~Facebook</strong><br />