This Is MS Multiple Sclerosis Community: Knowledge & Support

Just received a note from one of my NMSS contacts that they will be announcing CCSVI grant awards this afternoon at 4:30 PM EST.

Contrary to the rumors that have been flying around, there is no $100,000 cap on the grants being awarded. That figure applies to the Canadian MS society only...

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Marc
www.wheelchairkamikaze.com

Yup....less than 2 hours. Tic Toc----

http://mssociety.ca/en/default.htm

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

So... in about 40 minutes I'll be one of the three:
1.) really pissed
2.) still waiting on current lists
3.) jumping (okay I can't jump anymore) for joy because they are going to start enrolling patients with PPMS in the US.

Can't wait

$2.4 million for 7 research projects-
US and Canada combined.
Details here--
http://mssociety.ca/en/releases/nr_20100611.htm

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

It's a step forward. Testing not treating though ...

How many people are going to be willing to wait years for treatment?

Seven different studies determining the "prevalence" of CCSVI.

Quote:

The work of the researchers in these initial studies will not involve surgical treatment, but rather the investigation and determination of CCSVI’s prevalence in different circumstances.

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Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS or MS symptoms except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)

Not me!

This is phenomenal. If these studies confirm the MS/CCSVI relationship the floodgates will open.

The good news is that screening for CCSVI will not take that long to complete, so we should have these results fairly quickly.

Progress but still pissed, still on the waiting list.

Two years!

When I think how far my disability has gone in two years. What does two more years look like? I 'm frustrated today.

I'm am afraid that these studies are going to be farces like the German study.

First, nearly all of these studies are led solely by neurologists. Instead, they should at the very least have radiologists or vascular surgeons either leading or being co-leaders of the study.

Second, the quotes from many of these neurologists suggest that they're hoping to disprove the theory of an Italian researcher. For some reason they don't mention the published BNAC study (or even the ongoing Georgetown study). The quotes from the Canadian researchers seem more even-handed than the quotes from the American researchers.

Third, the doppler ultrasound requires sufficient training and experience to properly evaluate for CCSVI, and researchers who want to disprove CCSVI will not take the time or spend the money to ensure the necessary training for their sonographers.

Canada has only committed $700,000.00 and they have four of the seven projects. Is the 2.4 million going to be equally distributed among the seven projects?

I am underwhelmed. I am frustrated to see that every one of the seven studies is seeking to "redo" Dr. Zamboni's scanning --in an attempt to prove or disprove his discovery of CCSVI in people with MS. Two years is a long time for MS patients to wait while new doctors clarify something that Dr. Haacke, Dr. Dake, Dr. McDonald, Dr. Simka and Dr. Sinan and others are already seeing in 90-100% of pwMS. I am also frustrated to see that two of the US grants go to neurologists--Dr. Fox and Dr. Wolinsky--these gentlemen are brain specialists who do not utilize doppler technology or magnetic resonance venography technology in their daily practices. I would hope that at the very least they will be partnering with vascular doctors and doppler technicians in order to proceed with their studies. Dr. Zamboni's protocol is very specific- and the instruments and technology needed to test venous return are not something that can be mastered overnight. In looking at the grant recipient list--I can only think of Dr. McDonald's quote---we need plumbers looking at MS patients' veins, not electricians. I see too many electricians on this list.

On the plus side--it is good to see money committed to furthering studies for children with MS--a group that is often overlooked in research. I remain optimistic, and believe the best of our US and Canadian MS Societies. I am gratified to see that the voices and requests of patients for further studies into the venous connection to MS has been heard. The monetary response is not as robust as we had hoped, but the dialogue continues.
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

No. If you click on the "details" link for each study, you'll find that the four Canadian studies are receiving a total of C$700,000 over two years combined, while the rest of the funding is going to the three American studies.

Like Cheer said, I'm underwhelmed, and it seems that Canadians have a right to be outraged.

Waste of Money and time.

All this work has been done.

They are idiots and remain so. UNDERWHELMED does not even begin to state how typical this is of the MS society.

G