My doctor is on the NMSS board for review

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

My doctor is on the NMSS board for review

Postby chrishasms » Sat Feb 20, 2010 11:10 am

My neuro in CO is on the board for the review of CCSVI money. He said next month they will be going over all the proposals.

He did not like the ethics of operating on people, but he was happy I was able to clarify the issues they had with the operations. He thought Holly died because of the operation and he knew all about Radeck. He can't understand why they don't invent a new stent to use so the issue doesn't happen again. Also he doesn't understand why these doctors, especially Simka, is just firing people through there as fast as they can. He does understand Europe is a bit different than here though lol.

I did tell him the improvements some of the people have had and he was optimistic. I told him about the Putnam study and he was really interested in that.

He did say he was hoping some of the proposals coming up would have some animal studies in them because they really want to replicate MS by impairing those veins, in a sense they want to see the same results Putnam got.

All the other studies need to be ran very strictly with very clear parameters or they will be thrown out.

So there you go. Now you know what the review board is looking at. Straight from "The horses mouth".
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Postby HappyPoet » Sat Feb 20, 2010 1:57 pm

Thank you Chris!

I'm sure everyone will be happy you shared that information.

I just wish the NMSS was offering more than $100,000.

Thanks again :)

~HappyPoet
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Postby tazbo » Sat Feb 20, 2010 3:03 pm

Terrific info! The putnam info looks so very loaded with the potential to demonstrate the connection we need with veins.
Last edited by tazbo on Sat Feb 20, 2010 6:35 pm, edited 1 time in total.
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Timeline for NMSS Funding

Postby Chicagoboy23 » Sat Feb 20, 2010 5:53 pm

Hello All,

I will post the information of the review timeline below. This is from the MS Societies web page.
It would appear that if Stanford is waiting for funding from them...it will be many more months before announcement.
You would think that 30 days should be long enough to review applications...but they need 90 days.
We can keep our fingers crossed for the June results.
Good luck..

Mark

"CCSVI Research Funding Timeline
January 12, 2010 – Investigators whose letter of intent meet guidelines are invited to submit full research proposals.
February 9, 2010 – Deadline for proposals.
May 2010 – International panel of experts conducts an expedited review of all applications received through this special request for applications.
June 2010 – Funding decisions announced.
July 1, 2010 – Anticipated start date for funding of any successful research applications.

Taking advantage of the organizations' international scope, the applications will undergo an accelerated review process by an international panel being convened in cooperation with other MS Societies to ensure an expedited, coordinated response. If this hypothesis is confirmed, it could open up new research avenues into the underlying pathology of MS and new approaches to therapy.

Background: In a recent study by Dr. Zamboni and colleagues, the team evaluated abnormalities of blood outflow in major veins draining from the brain and spinal cord to the heart in 65 people with different types of MS, compared with 235 people who were either healthy or who had other neurological disorders. They used sophisticated sonography techniques to detect abnormalities of venous drainage. The investigators reported evidence of slowed and obstructed drainage in the veins draining the brain and spinal cord in many of those with MS. They also reported evidence of the opening of “substitute circles” – where the flow is deviated to smaller vessels to bypass obstructions, and these were often found to have reverse flow (reflux) of blood back into the brain.

The investigators call this venous obstruction “chronic cerebrospinal venous insufficiency,” or CCSVI. The treatment status of the people with MS (i.e., whether or not they were on an MS disease modifying drug) did not appear to influence whether they showed signs of CCSVI. The authors speculated that the reverse flow of blood back into the brain might set off the inflammation and immune-mediated damage that has been well described in MS. This study was published in June 2009 (J Neurol Neurosurg Psychiatry 2009; 80:392-399).

It is proposed, but not yet proven, that CCSVI may be corrected through endovascular surgery. This surgery is being called “liberation therapy” in some reports. One study getting underway was described at the 2009 ECTRIMS meeting in September. It involves a collaboration between researchers in Italy, Buffalo (NY) and Birmingham (AL) who are attempting to treat venous obstruction in 16 individuals using balloon dilation such as has been used for many years to treat blocked arteries.

In a small, open-label study by Dr. Zamboni and colleagues published in December 2009, the team evaluated the safety and preliminary outcomes of vascular surgery (percutaneous transluminal angioplasty) in 35 individuals with relapsing-remitting MS, 20 with secondary-progressive MS, and 10 with primary-progressive MS. (J Vasc Surg 2009; 50:1348-1358) They reported some positive impacts and suggested that controlled trials were necessary to better determine potential safety and benefits of this procedure.

Next Steps: The National MS Society has prompted communications between MS Societies worldwide and leveraged resources to ensure an open exchange of information and a coordinated and expedited approach to conducting and evaluating additional research on CCSVI. On December 16, 2009, the Society released a worldwide Request for Applications to the scientific community to explore CCSVI, and is collaborating with the MS Society of Canada and possibly other societies to convene an international panel of experts to conduct an accelerated review of proposals. We are also working with our sister MS Societies around the world to assure that our research strategies are coordinated. Through an internationally coordinated and expedited review process, new CCSVI research projects are expected to begin July 1, 2010. (See Research Funding Timeline above for more details.)

According to the Buffalo Neuroimaging Analysis Center, although 500 subjects have already been selected for their initial combined transcranial and extracranial venous doppler evaluation study, they are still seeking participants for a larger-scale clinical study with the aim of evaluating the prevalence of venous obstruction in people with MS. This study does not involve treatment of obstructions. The Buffalo investigators released preliminary findings in a press release and plan to continue the study.

To get the quickest answers and most reliable results about benefits and risks of any surgical procedure that might attempt to address blood flow in or out of the brain, it is crucial that such surgery be performed only as part of controlled trials, especially since there have been anecdotal reports of surgical attempts to treat CCSVI in people with MS resulting in adverse events, including one reported death.

Many questions remain about how and when this phenomenon might play a role in nervous system damage seen in MS, and at the present time there is insufficient evidence to prove that this phenomenon is the cause of MS."

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Postby mrsilkykat » Sat Feb 20, 2010 9:20 pm

Thanks Chicago. I don't look at NMSS anymore.

I thought I was keeping up with things, but what is the Putnam Study and do you have a link, please?
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Postby Cece » Sat Feb 20, 2010 9:32 pm

Putnam's study was done in 1936. Was it that he was injecting fat into dog's jugular veins to create obstructions, which resulted in m.s. lesions?
"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
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Postby mrsilkykat » Sat Feb 20, 2010 9:59 pm

Thanks Cece. You're always right there to answer my questions.
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Postby whyRwehere » Sun Feb 21, 2010 12:24 am

personally, I think we know having blocked veins is unhealthy, so why make dogs suffer. It is just cruel for no purpose.
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Postby NewHope » Sun Feb 21, 2010 1:29 pm

WhyRwehere, I absolutely agree! That is cruel and needless!!!
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Postby chrishasms » Mon Feb 22, 2010 8:33 am

My understanding is he is starting to look at the proposals next month. I believe there are a a ton of proposals. All of the doctors who look over these proposals also have normal practices they run too I guess. My doc is busy all the time so I imagine the others are too. I kind of expect that he will be looking these things over at home while he is eating dinner so I have to give him a little credit for some dedication.
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Postby cah » Mon Feb 22, 2010 8:57 am

Do you really think there are so many proposals? I think there will be rather few, because

- few professionals have even noticed, even fewer are eager to investigate CCSVI
- the time for setting up was quite short
- there is this blood-brain-barrier in profession areas*
- the funds granted aren't very high, they will have to look for additional funds

*Some look at the blood(flow), some look at the brain, very few look at both. In other words: Neuros don't have a clue about veins, angios have no clue about MS. They definitely have to build up interdisciplinary teams.

Would be great if there are many proposals, but I don't think so.
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Postby ozarkcanoer » Mon Feb 22, 2010 9:20 am

cah,

I have talked to a neuroradiologist here in St Louis who is teaming with another neuroradiologist and an MS neurologist for an NMSS grant to study CCSVI. These are professors/doctors at the Washington Universtiy medical School. It would stand to reason that with all the CCSVI buzz that many research institutes would apply for research grants and get in on the action.

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Postby chrishasms » Mon Feb 22, 2010 10:24 am

I gotta agree with Ozark. Just because no one has done a press release doesn't mean they are not looking at it. In fact my doc actually did mention he wasn't to impressed with press release medicine lol. He said the last thing he would do is Press release what he was doing, especially with all the interest in this, because his staff couldn't handle the regular patients and the thousands of calls!
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Postby jay123 » Mon Feb 22, 2010 11:08 am

Ther are doctors doing their own studies right now. In NY alone there are 4 doctors doing procedures, I'm sure there are others elsewhere. Their names will be released at some point, as of right now they are keeping it close to the vest.

An baloney on the dog thing, if it helps prove the theory open the doors to the pounds! It's a lot better than doing 'fake' surgeries on people.
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Postby Cece » Mon Feb 22, 2010 4:45 pm

would it even be dogs? Putnam's research was done in the 30s, it might have been more common then to use dogs...nowadays perhaps mice?
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