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 ]
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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