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

Postby whyRwehere » Tue Apr 13, 2010 4:19 am

That's the pot calling the kettle black. :D
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Postby Lyon » Tue Apr 13, 2010 4:24 am

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Postby whyRwehere » Tue Apr 13, 2010 4:34 am

I like to consider myself a citizen of the universe :wink:
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Postby Lyon » Tue Apr 13, 2010 7:44 am

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Postby CureIous » Tue Apr 13, 2010 8:20 am

Lyon wrote:
CureIous wrote:Cry me a river if I care not a whit for their feelings, whoever "They" are.
As stated in previous posts, "they" is "the opponent" as AMcG said, also known as organized medicine.

CureIous wrote:I beg to differ, what is "being pushed way too hard with little supporting evidence?". Testing? Operations in foreign countries?
I don't think differing to that is one of the options. Do you differ with the statement that organized medicine is of the opinion that and will/has been responding to CCSVI as if it's been pushed to hard with too little evidence?


If anything, it's not being pushed hard enough. Organized medicine depends on who one quotes. In my own tiny circle, "they" are quoted as being intrigued, captivated, wanting more info. Having one solitary voice above the fray doesn't lend that voice more credence, i.e. Freedman. Look at how benign (for instance) the initial NMSS response was, vs. what it is now. Leaps and bounds in relatively short order. No standing ovation for them, but better than a kick in the pants. If I had my druthers, I would reword your statement to say, "some in organized medicine".

Once again, there are differing definitions here of what constitutes evidence, and I hardly think that the typical layman like me, demands as sturdy a mountain of evidence as high science and the textbook writers. Comparing one to the other is frivolous and a waste of time. When I see a concerted groundswell of opposition, organized by the same high science AKA "they", other than the obvious politics involved in singular settings like Stanford, then I'll take pause. Otherwise it's game-on.

When the doctors begin pushing this on patients like other procedures http://tinyurl.com/y6stk6l,(Once gall bladder surgery went laproscopic, it became the most common operation in the United States. http://www.sages.org/publication/id/PI11/) then I'll worry, but educated patients asking for scans, perhaps an angioplasty for an identifiable, correctable pathology? Never. It's our right as patients to present the case, or to wait. Not like any Dr. has a gun to his/her head, they can always say no. So "pushing the issue" is a red herring, nobody is pushed any further than they want to be....
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 patientx » Tue Apr 13, 2010 8:46 am

and just so we're clear, all immune ablation therapies are based on the EAE theory of Dr. Rivers from the 1930s.


That's not correct. Immune ablation theories are based on the idea that new immune cells will develop that don't attack the nervous system, regardless of the initial cause. EAE isn't really a theory - it's a disease model.
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Postby patientx » Tue Apr 13, 2010 8:51 am

Vascular doctors around the globe are looking at slowed perfusion, hypoxic injury and venous reflux in CCSVI as a potential venous stroke, and taking it very seriously. ....

The fact is, vascular doctors are now being very cautious, getting their IRBs, setting up studies, and they are very interested.


Does anyone know of a group or institution (other than the original Zamboni group) where the vascular doctors are working (ideally with neurologists) to evaluate the neurological effects/improvements seen from the CCSVI procedures? Not just patient self-reporting, but some sort of established measures? From what I have seen, there isn't too much interest (on either side) to work collaboratively like this.
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Postby AMcG » Tue Apr 13, 2010 10:25 am

I think I have been too wordy in my last post. Although I was trying to be clear. When Lyon spoke about 'They' or 'organized medicine' I took it he meant practising neurologists or MDs (GPs we call them in the UK). The people who we all go to to get prodded about by and hopefully fixed. I do not believe there is any real opposition in this group of people they merely want to be left alone to get on with the job the way they have always done it. Basically they are the same as everyone else and wont change until everybody else changes. I know there are some brilliant exceptions (on our side) to this but they are rare. Lyon said this group is going to drag it's feet and not change. He is right they are. What I am saying is they are not the real problem. The real problem is the people who have it within their power to bury CCSVI again for another 30 years, as CureIous said above. People like Freedman, Jock Murray or Alistair Compston. I think the difference between Lyon and most other people on this board is that he trusts them (correct me if I am wrong). I don't. These people will have a huge influence on which research proposals get funded. What if when the announcement is made, only one proposal is approved and that is Freedman's? Do you think CCSVI would ever be mentioned by the MS Society again?

The only thing that will stop it happening is the action of patients and knowledgeable and committed advocates like Joan Beal and others on this board. I took it that Lyon's message was that we should give up agitating because it was making things worse. What I tried to say was that is the opposite of what needs doing. We need to continue to raise awareness, find allies amongst doctors and specialists who are interested in CCSVI and to challenge those in authority who are trying to bury it. A current example of this would be the web forum tomorrow. I have not yet seen Andrew Common and Aaron Miller perform and I am prepared to find that they are reasonable people. But whether they are or not I have prepared the most awkward questions I can think of for them.

I suspect I have been too wordy again so I will stop.
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Postby CureIous » Tue Apr 13, 2010 10:49 am

[quote="AMcG"]
The only thing that will stop it happening is the action of patients and knowledgeable and committed advocates like Joan Beal and others on this board. [quote]

Yes, double-down time. Very well stated the rest of what you proffered. "Good show".
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 Lyon » Tue Apr 13, 2010 12:46 pm

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The arrow

Postby fernando » Tue Apr 13, 2010 1:48 pm

The Buddha always told his disciples not to waste their time and energy in metaphysical speculation. Whenever he was asked a metaphysical question, he remained silent. Instead, he directed his disciples toward practical efforts. Questioned one day about the problem of the infinity of the world, the Buddha said, "Whether the world is finite or infinite, limited or unlimited, the problem of your liberation remains the same." Another time he said, "Suppose a man is struck by a poisoned arrow and the doctor wishes to take out the arrow immediately. Suppose the man does not want the arrow removed until he knows who shot it, his age, his parents, and why he shot it. What would happen? If he were to wait until all these questions have been answered, the man might die first." Life is so short. It must not be spent in endless metaphysical speculation that does not bring us any closer to the truth.


http://thebuddhistblog.blogspot.com/2006/08/teaching-of-poisoned-arrow.html[/b]
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Postby zinamaria » Wed Apr 14, 2010 12:43 pm

Fernando, now THAT is Bellissima!! Thank you for that bit of wisdom.

And I am not sure how it is that anyone could think that CCSVI is being 'pushed' on anyone. Feels so infantile. I can understand how one might be 'afraid' that certain persons are 'pushing too hard' but that is hardly a serious consideration given that anyone with a disease such as MS is simply asking for what is the humane and sane thing to be done. What I see here at TIMS is that people are suffering and want to be helped. That is hardly a matter of 'pushing' to ask for help. If a doctor does not want to be involved, they are not in the sandbox, not a child, they are an adult and can refuse to be involved.

And this: 1)how does anyone suppose to know that anyone is pushing anything on anyone; could this be a personal feeling (based in fear, it seems to me) hence projected onto others 2) isn't that like saying 'he made me do it'?
This isn't 5th grade. We are all adults, let us hope responsible ones, who know how to say, 'yes', or 'no' or 'I'm not interested, and can at least make a personal decision about how and by whom, and where, and to what extent they want to be treated. It is clear by reading Dr Sclafani's thread that there is interest, and it can only grow, on the part of vascular surgeons, radiologists and the like.
No one should have to try to 'convince' the neurologists. Those that are really interested in actually helping the ill get well will jump on board. Those that are worried about their pocket or big pharm well... nothing to be done about that but for us to keep asking for treatment and research.
If a doctor does not want to participate in what appears to be one of the biggest medical breakthroughs of recent times, then he/she does not have to.

Okay, off to read a good book.
Peace,
Zina
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Postby Brainteaser » Wed Apr 14, 2010 2:20 pm

XX
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Postby Lyon » Wed Apr 14, 2010 2:55 pm

.
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Postby Hope66 » Wed Apr 14, 2010 3:02 pm

WeWillBeatMS wrote:It's too bad there's nobody in TIMS that's buddies with Michael Moore at MSU. WHOA! He could do a documentary about CCSVI. Heck, he could even debut it at Joe Louis arena in Detroit and have the Zamboni machine there as a prop and he could confer with Dr. Mark Haacke at Wayne State University for information.

faith, hope & love


Love, love love this WWBJS :)
If Michael Moore happens to be looking, I'll volunteer to be a "Canadian" in the CCSVI movie!

be well,
High Hope
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Dx March 2003
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