NHS- their concerns are expressed....

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

NHS- their concerns are expressed....

Postby cheerleader » Mon Nov 30, 2009 9:03 am

First releases coming out from NHS express the following:

ConclusionThis is valuable research that builds on what is known about the physiological changes that occur in the venous system draining the brain and spinal cord in people with MS. The findings also indicate that there are differences in the venous abnormities in people with the four different disease courses of MS. This suggests that the venous obstruction and its location may have a role in determining the clinical course of MS.

The two principal limitations of these findings are:

The venous abnormalities were examined at one point in time in people who already had clinical MS. As such, it is not possible to say whether these abnormalities are a cause of MS or are part of the physiological changes in the central nervous venous system that result from MS. It is also possible, as the researchers suggest, that the venous changes could be a side effect of the drugs used in MS. The study involved a relatively small number of people with MS (and, therefore, even smaller numbers of people with each disease course). To establish a firmer association between MS and cerebrospinal venous insufficiency, and how this differs in each disease course, larger samples need to be examined. Although this study has found an association between MS and abnormalities in venous drainage from the brain and spinal cord, it is unclear whether these are a cause or a consequence of disease. More research is needed.

link

1. "what is known about the physiological changes that occur in the venous system" is a very misleading statement. All that has been studied is the BRAIN. Dr. Zamboni was the first to study the venous system. Researchers have noted slowed perfusion, lower CSF levels, hypoxic and gray matter injury and lesions along the veins in the brain, BUT THEY HAVE NEVER STUDIED THE VENOUS SYSTEM in relation to MS, ever. They never left the brain. Tsk, Tsk, NHS.

2."it is also possible, as the researchers suggest, that the venous changes could be a side effect of the drugs used in MS."
This point was clearly refuted in Dr. Zamboni's research. He clearly states that the venous stenosis and reflux was noted in ALL MS PATIENTS, whether or not they were on immune modulating medication. Tsk, tsk, NHS.

3."More research is needed" GOOD, we agree! This obviously means you will be funding research! Thank you, NHS!

Dear citizens of the UK...your mighty health program has spoken. Might I suggest contacting them with these points? Please do add your own. I'm just a loud mouth gal from across the pond....but these guys need some CCSVI learnin'-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: NHS- their concerns are expressed....

Postby Lyon » Mon Nov 30, 2009 9:12 am

oo
Last edited by Lyon on Sun May 08, 2011 6:10 pm, edited 1 time in total.
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Postby cheerleader » Mon Nov 30, 2009 9:23 am

What? No red letters, Bob? Now I have to go and get my Bible :)

Waiting, waiting for papers on Sardinians and more research. (insert finger tapping noise here) But wanted to clear up a couple of mistakes- because as Jamie likes to tease us, "I can't sleep, Someone is wrong on the Internet!!!!!"
xo,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby zap » Mon Nov 30, 2009 9:26 am

Any chance one of the Italians you talk to coudl ask Zamboni (on an italian forum) if he knows why the paper is being delayed?

Really hoping to I have that data in hand when I go to Stanford next week!
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Re: NHS- their concerns are expressed....

Postby Rokkit » Mon Nov 30, 2009 9:27 am

cheerleader wrote:2."it is also possible, as the researchers suggest, that the venous changes could be a side effect of the drugs used in MS."
This point was clearly refuted in Dr. Zamboni's research. He clearly states that the venous stenosis and reflux was noted in ALL MS PATIENTS, whether or not they were on immune modulating medication. Tsk, tsk, NHS.

I'm pretty sure MS drugs didn't cause my stenosis since I've never had any MS drugs.
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Postby Shannon » Mon Nov 30, 2009 10:56 am

Yes, it's ludacrous to think that the stenosis could be caused by DMD's. This would have to mean that our condition actually worsens when we are on treatment. It's quite the contrary! I had the same problems and issues before treatment as I do now, post-treatment, but I haven't gotten worse. In fact, there have been times when I was on Avonex that my lesions seemed to get smaller in size, or disappear altogether! I wonder if the fact that the UK has only been approving the use of DMD's for a short time makes the NHS so naive?
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Postby Lyon » Mon Nov 30, 2009 11:07 am

oo
Last edited by Lyon on Sun May 08, 2011 6:09 pm, edited 1 time in total.
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Postby zap » Mon Nov 30, 2009 11:20 am

Lyon wrote:
cheerleader wrote:because as Jamie likes to tease us, "I can't sleep, Someone is wrong on the Internet!!!!!"
I was embarrassed earlier to mention that I'm evidently the only person in the world who doesn't have any idea what he means when he says that?



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Postby LR1234 » Mon Nov 30, 2009 11:21 am

:D
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Postby ozarkcanoer » Mon Nov 30, 2009 11:30 am

:D :D Very funny, LOLOLOL
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Postby chrishasms » Mon Nov 30, 2009 11:49 am

123
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