UBC Reseach Disappointing

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

UBC Reseach Disappointing

Postby lalaland » Mon Feb 08, 2010 11:57 pm

Somebody sent me the overview of the proposed CCSVI research project at UBC. The focus is on getting enough money to purchase new MRI hardware and develop new imaging methods that could help CCSVI diagnosis.

Its disappointing to me that UBC is raising money to develop new, expensive, and (presumably) patentable diagnostic tools instead of using those that are already used successfully in Stanford, Buffalo, Italy, Poland, etc.

The UBC research will no doubt eventually be useful but ...I can't see its a priority right now when Canadians are desperately trying to wire money and get on waiting lists for treatment oversees because there is nothing available for them here.

Also, considering how widely UBC is publicizing its research in the MS community... its a little irritating to me that the overview stresses that the new MRI equipment won't be used solely for the CCSVI project but has "lots" of other research uses such Parkinson’s disease, epilepsy, Huntington’s disease, Alzheimer's etc.

Its sort of like the UBC MRI Research Center (who is fronting the proposal) really really wanted new equipment and with all the interest in CCSVI saw a great way of fundraising its purchase, in large part from MS patients who have a gun to their head and no time to wait.

The worst thing is that UBC's proposal may draw fundraising and attention away from other research projects that could have direct impact on MS patients NOW instead of years.

I'm just totally frustrated.
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Postby happy_canuck » Tue Feb 09, 2010 12:21 am

lalaland,

I disagree. I understand UBC was planning this research before W5 did its story in November, so they stepped up their pace because of the overwhelming interest generated. They did not jump on a bandwagon to get money -- they were doing this themselves quietly in the background until the story broke.

The new equipment will do such amazing things to monitor CCSVI and its treatment, so they will actually "see" what's happening at the nerve cell level. Ths is huge, in my opinion. Many patients who have been treated have reported decreases in fatigue but few other differences. What is happening may be microscopic and UBC will be able to track those changes. Maybe the microscopic changes will take 2 or 5 years to translate to improved function, but if we know the nerves are getting better, then we are well on our way to confirming the benefit of CCSVI treatment.

The UBC Brain Research Centre does conduct research for Parkinson's, etc. I don't think MS researchers should have a monopoly on using the equipment, which isn't required all the time for any one study. I don't think UBC is set up to take patients off the street and treat them anyway -- for that, you need to mobilize the provincial health care resources and get them to train technicians to use the equipment already in place in many hospitals. The Lower Mainland has 14 Doppler ultrasound machines, for example.

I am curious what other research project you think could have a benefit on MS patients now? I understand waiting for results will be difficult for all of us, but the fact that UBC is doing this research at all is more than I ever imagined would happen when I saw the W5 program. I was looking at flights here and everywhere to find answers. Now my clinic (and my neuro) is taking this on, which is far, far more than I have heard from the majority of others whose doctors haven't given CCSVI any merit at all.

Sandra
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 />
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Postby lalaland » Tue Feb 09, 2010 1:05 am

I know the UBC team has been defensive about saying they were ahead of W5 but...not sure there has been any evidence of that.

And I'm not saying that MSers should have sole right to the new MRI equipment, I just resent the fact that the researchers felt the need to stress that it will have "lots" of other applications, as if finally offering an effective treatment for MS isn't enough to justify a half million dollar machine.

And yes, I absolutely agree, it would be great if the new equipment was sensitive enough to track microscopic neural changes after treatment but...thats the problem, no where is anyone proposing funding for a clinical trial of the actual liberation treatment. I think thats where the funding should go.

Having to wait for that isn't just difficult. Its unconscionable.
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Postby Leonard » Tue Feb 09, 2010 2:07 am

The first thing they should get is the right echo-Doppler equipment, the right protocols to use it, and the training needed. They will be surprised to see that 100% of the MS patients show (huge) refluxes of their blood in the CerebroSpinal. You won't find this with MRI or venography.
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Postby costumenastional » Tue Feb 09, 2010 5:22 am

I can only say that i am grateful because they first recognised the potential of Zamboni's research and they are keep going full throtlle. Imagine if it wasn't for them. Yes, it may take years, but in the meantime people are getting liberated everyday and once Buffalo publishes more encouranging data more docs worldwide will take the matter on their hands.
Who said that everything depends from Buffalo?
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lalaland

Postby youbetcha » Tue Feb 09, 2010 7:11 am

lalaland - I share your frustration and I'm certain we're not alone!
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Postby Greenfields » Tue Feb 09, 2010 7:23 am

I'm with La La Land, maybe not in the equipment aspect but the "get freakin moving aspect". Anybody know of anyone on the trial? Anyone heard anything about the trial...??? Olympics be damned....give us some info please.

Cheers
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Postby emess2 » Tue Feb 09, 2010 9:42 am

I am also a nominal out-patient of the UBC Clinic. The truth is that, whatever they're doing, it is largely irrelevant to me. I have progressed enough that I'm not willing to wait while they amuse themselves with their studies.

It's clear that the MS Societies and MS Clinics have abandoned people like me. These proposed studies are great for those who will be diagnosed in the future or are in the early stages of MS, but hey, I'm here now.

I need proper diagnosis and treatment for CCSVI NOW!! I'm not going to get it through the MS Clinic so I want vascular specialists and others who can actually help me.

Proper testing for CCSVI should be made available to those of us who want it. Afterward, we are on our own to seek radiologists and others who will help. Let's save our money for these people.

In the meantime, this site has some suggestions on how we can increase circulation in the affected areas or overall. I'm trying some of these out while I lobby for proper diagnostics.

I'm sure I'll be dead before the various MS bureaucracies have accepted CCSVI - and I intend to live a long time! We need properly trained diagnosticians independent of the MS Clinics and a growing list of other open-minded medical workers who can help us solve CCSVI and its effects. I do not think that people living with MS should wait for the existing MS bureaucracies to help.
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Postby lalaland » Tue Feb 09, 2010 10:05 am

I have the UBC research "overview" if anyone wants me to send it to them (2 pages). Just pm me and I'll send.

And, like emess2, I just can't wait. I'm writing this for my adored sister who has MS. She is progressing very rapidly, she lives in another city, every three months when I see her I am heart stricken by her decline.

Someone suggested that UBC would be able to report out in two years. Is this madness? Can you imagine telling a cancer patient that they'll have to wait two years for a promising treatment because we want to buy equipment that will take some really cool microscopic images of before and after?
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Postby PointsNorth » Tue Feb 09, 2010 11:00 am

Thanks lalaland,

In terms of offering TREATMENT options, at what point does research become redundant? Buffalo should provide us with proof of concept and allow us to move forward. Maybe any additional research can take place in PARALLEL with treatment? I won't even tell you what my UBC clinician thinks of Zamboni!

We've got a lot of options in terms of where we can send money - specifically for research that gives a nod to TREATMENT. UBC needs to position itself as a leader, not a stick in the mud. Alas, I know a good PR firm if they are interested!
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Postby PCakes » Tue Feb 09, 2010 11:32 am

The passionate articulations of ms'ers or as I like to refer to myself .. CCSVI'ers and their advocates are electric!!.. please please reroute your messages to our political forces.. particularly the Liberals. The Liberals have CCSVI on their agenda for the next sitting of parliament and now that the Ministry of Health have hung themselves with their Conservative stand on CCSVI treatment we must SPEAK OUT!! 100,000 Canadians with MS/ CCSVI mutliplied by the lives of those they touch is a LOT of votes...!! I don't give a crap that they we will strain the imaging resources.. this is why we have them!! I know for a fact that the bulk of this equipment sits dormant due to lack of funding and trained personel.. let's get these babies fired up!!
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