NMSS

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

Postby CureIous » Tue Oct 06, 2009 8:17 pm

[quote=

I do agree that there is some double talk and it was a little frustrating of a read, but to me it reads more like they are leaving the door open to the possibilities. Personally I don't think they will be able to ignore the movement and much much more will come. Afterall, if things pan out with CCSVI they might have to rename the society.

Mike[/quote]

Plausible deniability comes to mind lol. Too bad we can't invent an easier catchier acronym that of course is pertinent to the subject matter. CVS and such. Don't think anyone cares what the label is, as long as it gets attention. I know they aren't the enemy here, the disease is, but common sense to me would be to lay out all the info on the table, and let perfectly capable big people decide for themselves, with the help of their doctors. After all, isn't that how most of us got on board or at least got interested enough to follow it closely? This feels like the kid who got to mom first, their story always carries more weight! Big family, I know! hahaha. Oh and thanks to Lyon for getting the article too. Canadian TV, wow, that's so incredible. Do we have any Canadian's in here? Mark.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby cheerleader » Tue Oct 06, 2009 8:40 pm

Just sent the NMSS info on research funding to Dr. Haacke, and will talk about it with Dr. Dake. They have put it out there...they want to fund research. Let's see if that's the truth! I like to call folks' bluffs :)

Ashton Embry hooked us up with Canadian TV. We have lots of Canadians on TIMS...jimmy, dignan, robbie...many others. Hopefully this will be seen worldwide. Will keep you posted-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby MrSuccess » Tue Oct 06, 2009 10:46 pm

This is good news. I did not expect a response to the CCSVI research so soon from the NMSS. For the following reasons :

The NMSS and other MSS have a huge responsibility upon themselves to inform people of which treatments are well researched and safe to use.

It is my understanding that they [ MSS ] are willing to fund research into new novel ideas . Therefore they [ MSS ] are open to the idea of funding CCSVI research , if it meets their standards . Let's hope Dr. Z & Dr. D make their pitch ASAP.

One would expect the NMSS to be very cautious in what they support as many people depend on them to filter through the mountain of medical language each new approach produces. That's a big responsibility.

I have said this before ....the LAST thing MSS societies need is a stampede of MS patients abandoning their medications , based on an exciting but still new solution .

Changing horses in the middle of a stream .....is not without it's risks.

All in All ...the NMSS news release is great news for CCSVI supporters.

Of which .....I am one.





Mr. Success [ A reformed BOLD word processor ] :wink:
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Postby whyRwehere » Tue Oct 06, 2009 11:28 pm

When is the Canadian news thing coming out, and Cheerleader, can you ask them if it will be available for people in other countries to watch...online or whatever...
Very excited about that!
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Postby Ernst » Tue Oct 06, 2009 11:54 pm

cheerleader wrote:Ashton Embry hooked us up with Canadian TV. We have lots of Canadians on TIMS...jimmy, dignan, robbie...many others. Hopefully this will be seen worldwide. Will keep you posted-
cheer


One copy to youtube, would be YES.
My wife's 3 yrs post video: http://www.youtube.com/watch?v=eLeqLps8XR8

Our family: http://www.youtube.com/watch?v=p_QCKxeQAlg
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Postby CureOrBust » Wed Oct 07, 2009 2:10 am

cheerleader wrote:Just sent the NMSS info on research funding to Dr. Haacke....
Hey! his my ... er ... and I beat ya to him by about 4 hours.
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Postby fernando » Wed Oct 07, 2009 4:27 am

CureIous,

Yes, I am concerned also about Dr. D, albeit only slightly. Bigger the money pie, bigger the risk. Not much into conspiracy theories but still makes you wonder "what if". Only God can protect Him 24/7.


In fact, I was thinking about his license or fear to lose it or some kind of legal action or "advise" from some kind of organization (fda?) or patients not getting approval for tests or surgeries by their insurance "because this is not proved".
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Postby fernando » Wed Oct 07, 2009 4:28 am

Cheer,

Congratulations! My God, CCSVI on TV!, you are a really big cheerleader!
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Postby Loobie » Wed Oct 07, 2009 4:58 am

These are first steps. It's on the radar and people WILL be talking about it. I think it just can't be ignored even if it is attempted. To me, this is nothing but good. Remember there is no "bad publicity" when the getting the word out period was yet to be done. I think this is just the start.
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Postby BBE » Wed Oct 07, 2009 6:29 am

Well, I was also complaining that there was no mention about CCSVI in ECTRIMS Summary on NMSS few weeks ago...
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Postby CureIous » Wed Oct 07, 2009 12:23 pm

MrSuccess wrote:This is good news. I did not expect a response to the CCSVI research so soon from the NMSS. For the following reasons :

The NMSS and other MSS have a huge responsibility upon themselves to inform people of which treatments are well researched and safe to use.

It is my understanding that they [ MSS ] are willing to fund research into new novel ideas . Therefore they [ MSS ] are open to the idea of funding CCSVI research , if it meets their standards . Let's hope Dr. Z & Dr. D make their pitch ASAP.

One would expect the NMSS to be very cautious in what they support as many people depend on them to filter through the mountain of medical language each new approach produces. That's a big responsibility.

I have said this before ....the LAST thing MSS societies need is a stampede of MS patients abandoning their medications , based on an exciting but still new solution .

Changing horses in the middle of a stream .....is not without it's risks.

All in All ...the NMSS news release is great news for CCSVI supporters.

Of which .....I am one.





Mr. Success [ A reformed BOLD word processor ] :wink:



Dear Mr. reformed Bold Dude. lol.

I was actually parsing the text of the article itself, not the generalized attitude they have towards new and novel therapies, which quite understandibly, they are required to move slowly towards approval. Since they tout so much of the proffesional side of the research, I was expecting a professional, well researched article, with ALL the latest info, good bad or otherwise. It's not impressive at all, and they can do much better without having to "get on the bandwagon", but to also not treat MS'ers like a bunch of children who cannot make up their own minds.
I certainly wouldn't expect a stampede of people abandoning drugs, after all, even the stenters in here are all over the map when it comes to medicate/don't medicate. Most MSers are intelligent, knowledgeable people, who in the absence of info, will seek out what their disease is, what it isn't, and how much it varies between individuals, and over the years.

...Since a simple CCSVI google search ranks us as numero uno, most googling of our voluminous acronym will land people here, of that I am most glad. I dunno, I for one hold them to a higher standard of reporting than your average AP news outlet...


I'll do a bit more parsing here then let it be. Luckily this thread wasn't a hijacked thread so might as well...

"....ages-old speculation" Yes, but not "ages old investigated".

"...was an early idea that was eventually dismissed as more research suggested that immune-system attacks and inflammation played a pivotal role in the damage to nervous system tissues". Think we all know the history on this one. Who dismissed it btw? Neurologists?

"and at the present time there is insufficient evidence to suggest that this phenomenon is the cause of MS.". Overstating the obvious, but in the absence of alternatives....

"Frequently Asked Questions About CCSVI and MS". Who's questions? Show me the money on this one please. Appears to be more "questions we can answer NO! to lol". Save for the last one of course.

"Q: If CCSVI turns out to be important in MS, can it be treated? "
A: No one knows yet. At least one small study....
Who's "no one"? What small study? It can't be treated? Says who? My outboard motor is starting to but but but here....

"to determine whether that procedure would be beneficial.". Well, as they say in court, "you raised the issue counselor". They already linked Zamboni, how about the follow up? Are they going to come back and edit the article later to show the follow up?

"Q: I have MS. Should I be tested for signs of CCSVI?
A: No". Lol. Okay, so even TESTING is a no-no now. This is the one that really chapped my hide...
"there is no proven therapy to resolve any abnormalities that might be observed, and it is still not clear whether relieving venous obstructions would be beneficial."
There's also no proven therapy that resolves abnormalities in the immune system either, but you don't see them saying that.... Funny how they toss the "proven" test at CCSVI, and pharma funded studies at everything else.

"Q: Does CCSVI make the standard treatments of MS meaningless?
A: No. There is ample evidence proving that the FDA-approved therapies for MS provide benefit for people with most forms of MS."
"Provides benefit, but progression is nearly a given".
The "proving" involves benefits, and nothing else. "We've proven that it helps". So does exercise. And steroids. Notice the bit of overreach in the "meaningless" part, who said anything about making drugs meaningless? This is typical straw man put up, staw man knocked down.

Good luck getting past the "scientific peer review panel". Wonder how many neurologists are on that. Don't hold your breath people. Doesn't mean one doesn't hope for the best here, but prepared for the worst? You bet. Hopefully their next article will have a bit more homework built in. They are perfectly capable of casting this in the proper light, without any tinge of endorsement. I challenge them to do just that.


Mark
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby Sharon » Wed Oct 07, 2009 12:33 pm

Fernando wrote
In fact, I was thinking about his license or fear to lose it or some kind of legal action or "advise" from some kind of organization (fda?) or patients not getting approval for tests or surgeries by their insurance "because this is not proved".


Dr. D. is performing a vascular surgery which is approved.

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Postby Sharon » Wed Oct 07, 2009 12:55 pm

Cheer wrote
Just sent the NMSS info on research funding to Dr. Haacke, and will talk about it with Dr. Dake. They have put it out there...they want to fund research. Let's see if that's the truth! I like to call folks' bluffs


Glad you are calling their bluff. I happen to know that recently a couple of well known neurologists went to the MSAA to fund research for CCSVI -they were turned down supposedly because of lack of funds.

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Postby Needled » Wed Oct 07, 2009 1:08 pm

Any guesses as to whether they'll update the info when Dr. Zamboni's paper is published this month in The Journal of Vascular Surgery? Assuming, of course, that one of us sends it to them.
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Postby Sharon » Wed Oct 07, 2009 1:13 pm

Cheryle -
Any guesses as to whether they'll update the info when Dr. Zamboni's paper is published this month in The Journal of Vascular Surgery? Assuming, of course, that one of us sends it to them


I think we should all send it to the NMSS - flood their email box. Any volunteers?

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