New York Times debate?.."Cheerleader" needed!

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

New York Times debate?.."Cheerleader" needed!

Postby PCakes » Thu Jul 01, 2010 1:10 pm

There is a Doctor 'Dave' slamming the CCSVI theory in the comments section of the recent NYT article http://well.blogs.nytimes.com/2010/06/2 ... 8#comments .. I know only one person knowledgeable enough to put this guy in his place...
Here is an example..he is responding initially to "what would you do if diagnosed?"..
Steven, OK, you hooked me back into it. What would I do? I would not seek out quacks offering shams and false hopes and pay them to “liberate” me. You ask why this is biologically implausible. Let’s see, 1. There is no functional obstruction. 2. When there are functional obstructions in CNS veins, the result is not MS. 3. MS occurs in multiple venous distributions. 4. We observe blood within brain tissue sometimes – it doesn’t correlate to MS lesions. 5. There is strong evidence MS is a primary auto-immune disease. 6. MS responds to immunotherapies. 7. MS lesions are highly discrete, how could decreased blood flow along a large draining vein hope to cause optic neuritis? 8. There is no evidence here, only highly suspect anecdotes. 9. There is no mechanism here, only a highly suspect narrative.

So what would I do? I’d go on Tysabri right away and take my chances, which are very low. I’d seek out a trial and if it sounded plausible to me and a disinterested expert, then I’d enter it.

Marie, you are dim. Sorry, but the reason Semmelweiss is a hero is that he rejected easy narratives and did a controlled study. Non-trialists could not handle the evidence he presented. In face, the problem accepting the data was that there wasn’t enough medical skepticism. People believed their personal experience, so once again we see the danger of anecdotes.

Hey Mama D, how well did the first cardiac transplant patient do? Regardless, yours is a false analogy, cardiac transplant =/= “liberation,” based on animal models, clear pathophysiology.
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Postby Cece » Thu Jul 01, 2010 2:01 pm

Over on the Facebook ccsvi page, cheerleader suggested that it's not worth arguing with other posters on the NYT blog.

I prefer the message board format here, but I'm impressed with the facebook page. I'm been checking in every few days looking for news on Barb Farrell.
"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 cheerleader » Thu Jul 01, 2010 2:12 pm

Hey guys--
I have enough trouble discussing CCSVI over here, I'm not going into the NY Times comments for fun :)

People are going to believe what they want. That's their right. My right was to print out Dr. Zamboni's research and see if Jeff had blocked jugular veins. He did. I didn't take the research to a quack, but we consulted with one of the top cardiovascular interventional radiologists in the world. As more vascular doctors and interventional radiologists become involved, there will be more research and evidence.

Neelima (the gal in the story) got her research paper links on the Facebook page and took them to a highly respected vascular doctor. She's on vacation now in the tropics, where the heat isn't bothering her, and she managed to walk thru the airport, no problem. She and her family and her doctor are telling everyone they know, and so word of CCSVI keeps being disseminated around the world. Jeff has been outside for four hours in 95 deg. temps today, weed whacking and doing those outdoor tasks he had given up on before angioplasty.

The main job of CCSVI Alliance will be to provide materials and resources to patients and doctors, so that they can investigate venous insufficiency for themselves. It will take much more than a few pithy replies on this board or the NY Times to turn MS research on its head. But I appreciate your belief that I could do that...
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby PCakes » Thu Jul 01, 2010 3:13 pm

..without a doubt..you already have..thank you

Cece, ..me too.. Barb and a few others!
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Postby zap » Thu Jul 01, 2010 10:45 pm

Am I the only one who thought "Dave" sounded a whole lot like a Rose by a different name? :)
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Postby sbr487 » Fri Jul 02, 2010 12:14 am

"since MS responds to immune suppresants" it is an autoimmune disease ...

Maybe we are plain lucky not to have typical neuros one our side ...
No wonder MS has eluded any breakthrough for such a long time. What else one would expect when such narrow minded people are carrying out the research ...
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Postby Salvatore24 » Fri Jul 02, 2010 12:44 am

sbr487 wrote:"since MS responds to immune suppresants" it is an autoimmune disease ...


Quite laughable. Why is progression not stopped in it's tracks with immune-suppressing drugs then?
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Postby BooBear » Fri Jul 02, 2010 1:42 am

That's really a great point, Salvatore. If the disease was truly autoimmune, then you would think that the immunosuppressants would slow progression down to a crawl if not halt the disease altogether, as you pointed out.

In truth, the CRABS do not halt progression. All those drugs even claim to do is "slow" progression- but how do we measure that accurately?

Am I to believe that without the Avonex I would have, what, 50 lesions instead of 36? How could we know?

I am so glad that I am only six weeks away from Liberation.
Three veins angioplastied.  One renewed life.  
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Postby BooBear » Fri Jul 02, 2010 3:00 am

I replied to Dave (my post is currently pending moderator approval). I did so not because I felt Dave deserved a response, but for the people afflicted with MS, know someone with MS, or care for someone with MS that would benefit from what little I had to offer in response.

I signed the post as "BooBear" for those that are interested.
Three veins angioplastied.  One renewed life.  
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Postby belsadie » Fri Jul 02, 2010 5:22 am

Unfortunately, the NYT has a bit of a following. The best way to combat its influence is to be armed with facts when a challenge is presented.
The best, and I think only, way to dissuade the naysayers, will be the eventual presentation of research results. The challenge is to be sure those researchers know what they're doing. When Dr Z's information is categorized as "junk science", THAT may be more difficult then imagined.
In the meantime, Liberation marches on.........
I love the statement about the effectiveness of the DMDs.. I wonder how many users of those poisons have been consulted about their effect on progression..(?) I,myself, have tried them ALL [not Tysabri...too risky for me] and all I got were wicked side effects. They ARE 30% effective, though.
Common sense partnered with solid scientific proof will yield the truth [that we have already experienced] about CCSVI and the "MS connection"
Fortunately, it will be sooner than later because of "patient involvement". That's another phrase for harassment, and so be it! Whatever works....
We have the privilege of being part of history making moments. Patients will, from now on, know that they have a legitimate right to input regarding their care; and CAN exert enough influence on their physicians to make a difference. The 60"s brought about social change, this century will bring about a revolution in health care. AMEN
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Postby rssugg » Fri Jul 02, 2010 5:39 am

i posted as well :x
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Postby BooBear » Fri Jul 02, 2010 9:02 am

Rssug, read your post. Spot on!

Belsadie, AMEN!

I have talked to everyone I know about CCSVI. Further, I hear stories of people that I have never spoken to before- the person I had talked to told a person afflicted with MS something about CCSVI and they want to learn more. I then have an opportunity to talk to them, direct them here, and help them gain access to information.

Just yesterday, my husband brought home his area supervisor's personal email address. One of his company's leaders lost her mother to MS, so she always asks me how I am feeling when we run into her. I told her about CCSVI a couple of months back. I ran into her shortly after my Doppler and told her what they found. She had a conversation with the area supervisor, who then sought my hubby out to talk to him.

This gentleman has started to research CCSVI on his own, finding videos on YouTube (like I did), but when my hubby told him I was scheduled to be liberated, this gentleman asked that I email him EVERY detail about the procedure, how I felt, etc.

His brother and sister in law both have MS. His mother in law has MS.

When I tell them about my procedure, I am personally in a position to help those people. And they will also go on to tell their stories.

The more we can discuss- here and in our personal lives- the more we spread the word and keep the momentum flowing. AMEN!!
Three veins angioplastied.  One renewed life.  
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Postby 1eye » Fri Jul 02, 2010 12:30 pm

Absolutely. Word of mouth. I'd give more, for your chances at disseminating information, if you were a hairdresser, than if you were, for example, a New York Times reporter. That is just, as they say, the way things are. The problem really is that so many neurologists feel personally threatened, and spread the 'word' about CCSVI, to people who depend on them, like we do on Cheerleader, to be truthful. Another hiccup is, so many GPs depend on the NYT, as well as neurologists, and participate in this gossip. But that, in the end, is the newspaper's problem, not yours. I gave up on them, after talking to my first biased reporter. Mere laziness can slant their stories. Keep on telling people: treatment for CCSVI cures some people, improves and saves the lives of others. The blog or whatever it is, sounds on the surface, like the truth, but it's a lie.

Just take one innocuous sounding bit. "3. MS occurs in multiple venous distributions." So? Don't they all of them get to the heart through those big veins in the neck and back? Or are we considering corollaries?

I think the important thing is that these distributions (of what, you may ask, if not veins?) are all venous. The fact they are multiple does not say anything against CCSVI's existence, or against the fact that CCSVI causes the constellation (that is, collection) of symptoms, known by most people until this decade, as 'Multiple Sclerosis'. That's what the V in CCSVI stands for, Venous. Assuming, mind you, that most people, including those with 'MS', have mostly the same major veins.

If it's scleroses (not distributions, or veins) that are multiple, well, that's a mite redundant, but no-one is arguing 'MS' occurs in them. "Oh, it's multiple venous distributions of sclerosis that 'MS' occurs in. That's very different. Never mind."

Come on, give it a rest. As Dudley Moore said in Beyond The Fringe, "Don't say 'Will this wind,' we don't want to hear "Will this wind" again, that would be a most tedious experience. What we want to know is, 'What will this wind?'"
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Re: New York Times debate?.."Cheerleader" needed!

Postby frodo » Sat Jul 03, 2010 6:40 am

The one I like the most:

5. There is strong evidence MS is a PRIMARY auto-immune disease

Even accepting that in fact MS is autoimmune, What exactly is the evidence this doctor proposes that makes it primary? It is interesting that they have not found still a specific auto-antibody, but this man affirms nevertheless that autoimmunity is primary. (No explanation about it, of course)
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Postby sbr487 » Sat Jul 03, 2010 7:21 am

"we all know that ms is not vascular was proved in 80's"
so no proof = invalid theory ...

sometimes I wonder whether these are the people teaching the next generation in colleges ...
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