New thread for L

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

Postby soapdiva884 » Tue Dec 28, 2010 8:23 am

Scorpion:
L Lyon is not the one telling people to not seek the liberation procedure it is Zamboni himself who said to wait to get the procedure until further clinical trials are conducted. I agree with Zamboni. I do not believe ANYONE should get the procedure until there is more information on CCSVI and than if it does exist until we find out what effects it has on people with MS. There I said it(gasp). However what it comes down to is a personal decision and certainly if someone believes that it is the treatment for them they should go for it.



We did not have the luxury to wait (gasp)! We were in a pretty emergent state of if we don't do this now it will be too late for John! Having said that, I am glad we did not wait and John has NO MS fatigue or cog fog whatsoever! If you know anything about MS fatigue you know it is debilitating and can push someone over the edge! As for cog fog, driving in a car and not knowing where to turn to go home is a HUGE issue. That is all gone now! Placebo? Come on, let's be real!
Boyfriend dx'd 6-6-06!!! RRMS............CCSVI procedure done on Nov. 13, 2010 and March 7, 2011 by Dr. Sclafani!
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Re: New thread for L

Postby scorpion » Tue Dec 28, 2010 8:36 am

L wrote:
scorpion wrote:L Lyon is not the one telling people to not seek the liberation procedure.


He's not telling people directly, he dissuades them with his mantra.

Lyon - HDC is, comparatively speaking, very risky. Ask any neurologist. You get sepsis and you are in big, big trouble. On top of this it is a carcinogen, and quite a powerful one at that.

And I know how you feel about the placebo effect, you have repeated it a million times.

The never ending repetition. CCSVI Locator, Facebook, those two don't suffer from a Leon and a Scorpion carrying out their civic duty, repeating the same idea a dozen times a day. Why us? What have we done to deserve you? We just want to discuss CCSVI in the CCSVI forum and not enter a mind numbing un-discussion. The arguments against CCSVI are documented and what do we have neurologists for anyway? Can't you just talk in the General Forum, unless you have something new and interesting to say, a contribution to make? Or perhaps you could have a sticky in the CCSVI forum. A warning/scepticism thread where you get to warn everyone against CCSVI/point out the perceived weaknesses in the theory but keep the comments to that? It would attract lots of attention, you're so busy posting that it would stay at the top of the forum, newcomers will read it for sure but we'd avoid the repetition. How would that be?


Please remember Lyon DID start this thread and you decided to respond to it although there is nothing wrong with that. I have said from the beginning that people could care less about the number of times we post. It has more to do with, for whatever reason , that what we say challenges what people are committed to believing. If you look at my posts I MAY post in this forum once or twice a day at the most so I do not understand why it is such a problem. I am not interested in going on to sites that are primarily for people who completely accept the CCSVI theory. I have always assumed THISISMS was a place where people discussed new ideas AND debated them. I have a feeling, from the PM's I receive, that is still the case. I must add that I needed a laugh today and you supplied it with:
those two don't suffer from a Leon and a Scorpion carrying out their civic duty, repeating the same idea a dozen times a day. Why us? What have we done to deserve you?
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Postby Lyon » Tue Dec 28, 2010 8:48 am

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Last edited by Lyon on Wed Jun 22, 2011 6:06 pm, edited 1 time in total.
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Re: New thread for L

Postby Lyon » Tue Dec 28, 2010 8:58 am

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Last edited by Lyon on Wed Jun 22, 2011 6:07 pm, edited 1 time in total.
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Postby L » Tue Dec 28, 2010 9:13 am

Lyon wrote:
soapdiva884 wrote:I am glad we did not wait and John has NO MS fatigue or cog fog whatsoever! If you know anything about MS fatigue you know it is debilitating and can push someone over the edge! As for cog fog, driving in a car and not knowing where to turn to go home is a HUGE issue. That is all gone now! Placebo? Come on, let's be real!
That's wonderful, it really is. To my awareness no one, at least I have never said that the anecdotal information is or isn't due to placebo, just that the existence of placebo effect and the degree of placebo needs to be ruled out under controlled circumstances.

I don't see why such a simple and necessary aspect is so strongly and completely vilified and has met such ongoing resistance from people who otherwise talk as if they are convinced that CCSVI is real enough to pass muster?


Yes! We all agree! The placebo effect is real! We just, I think I can speak for most people here, don't accept that the effects of a procedure to treat CCSVI, negative or positive, are wholly, or solely, due to the placebo effect. And, yes, for the thousandth time, trials will have to, and will be conducted to determine, scientifically, the extent to which the placebo effect may or may not be affecting outcomes. We know! We know! We know! We know! RFepeating the fact again and again and again in half the threads on this board does none of us any good. It goes nowhere!

I can't help the conviction that these same people would be the first to bitch when dealing with the consequences of inadequate testing in other fields of science but for some reason in this case it's OK that the rush for acceptance of CCSVI should supersede science?


No, we do not want more testing before we have the procedure!! I have not heard one person on this forum say that they will wait for more testing. We are satisfied with the safety profile of a procedure that, essentially, is nothing new. We all believe research to be desirable though. Again, I repeat, I believe testing to be necessary but I didn't have the five or ten years to wait, because I have multiple sclerosis!! This forum is for people who have, or who care for people with, multiple sclerosis.

We know, further research, trials, they are desirable, but the procedure is available for us and it's worked for many of us. What we want is research and funding and a better understanding of the condition, not a constant drone in our ear that 'the theory is unproved and the effects may partly be placebo'because we already know this!!!
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adiós mi amigo especial

Postby Lyon » Tue Dec 28, 2010 9:30 am

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Postby Brainteaser » Tue Dec 28, 2010 2:31 pm

L - you are on a hiding to nothing. This stuff is not going to help your MS, mate.

The most illuminating point to come from this thread is that TiMS has 10,000 members. Presumably therefore, all but about 3 see the futility of countless hours of meaningless 'debating' about something which no-one yet knows enough about.
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Postby L » Tue Dec 28, 2010 4:17 pm

Brainteaser wrote:L - you are on a hiding to nothing. This stuff is not going to help your MS, mate.

The most illuminating point to come from this thread is that TiMS has 10,000 members. Presumably therefore, all but about 3 see the futility of countless hours of meaningless 'debating' about something which no-one yet knows enough about.


Yes, it's completely pointless.
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Re: New thread for L

Postby NHE » Tue Dec 28, 2010 6:53 pm

NotFound wrote:
L wrote: Why do you repeat yourself over and over? Why not post in the Stem Cells forum and watch as no one disagrees? Why post, what purpose does it serve to repeat your opinion over and over that the CCSVI theory may have no basis?


I was wondering the same thing, Lyon.

You said that you yourself do not have MS.

Do you have somebody that you care for who has MS? Are you a researcher of MS particulars? Or do you just like to argue?


Bob is not a medical professional. Bob is not a scientist. Bob has told us who he is. Bob is a gardener.

http://www.thisisms.com/ftopicp-140528.html#140528
http://www.thisisms.com/ftopicp-23962.html#23962
http://www.thisisms.com/ftopicp-132846.html#132846
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Re: New thread for L

Postby NotFound » Tue Dec 28, 2010 7:05 pm

NHE wrote:
NotFound wrote:
L wrote: Why do you repeat yourself over and over? Why not post in the Stem Cells forum and watch as no one disagrees? Why post, what purpose does it serve to repeat your opinion over and over that the CCSVI theory may have no basis?


I was wondering the same thing, Lyon.

You said that you yourself do not have MS.

Do you have somebody that you care for who has MS? Are you a researcher of MS particulars? Or do you just like to argue?


Bob is not a medical professional. Bob is not a scientist. Bob has told us who he is. Bob is a gardener.

http://www.thisisms.com/ftopicp-140528.html#140528
http://www.thisisms.com/ftopicp-23962.html#23962
http://www.thisisms.com/ftopicp-132846.html#132846


Now, that is sweet. No, no, I am not being sarcastic or anything. I think it is utterly sweet of you to actually do this search for me..

Thank you.

L, I like the way you carry a discussion. I am actually making mental notes for myself.

Now, back to the scheduled CCSVI topic :)
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Re: New thread for L

Postby scorpion » Tue Dec 28, 2010 7:57 pm

NHE wrote:
NotFound wrote:
L wrote: Why do you repeat yourself over and over? Why not post in the Stem Cells forum and watch as no one disagrees? Why post, what purpose does it serve to repeat your opinion over and over that the CCSVI theory may have no basis?


I was wondering the same thing, Lyon.

You said that you yourself do not have MS.

Do you have somebody that you care for who has MS? Are you a researcher of MS particulars? Or do you just like to argue?


Bob is not a medical professional. Bob is not a scientist. Bob has told us who he is. Bob is a gardener.

http://www.thisisms.com/ftopicp-140528.html#140528
http://www.thisisms.com/ftopicp-23962.html#23962
http://www.thisisms.com/ftopicp-132846.html#132846


Nice. A moderator getting personal.
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Postby Cece » Tue Dec 28, 2010 8:02 pm

I do not think Lyon's job is relevant to any discussion at any time here on this board. I have said this before too, I find it strangely upsetting, it comes across as an attempt to cut him down to size.

If it is ok to use "Lyon is a gardener" as a way to make a point, then it would be ok to use "Cece is a stay-at-home mom and, frankly, not such a good one" too. (And so that there is no confusion, I am saying that it is not ok to use either of those arguments.)
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Postby scorpion » Tue Dec 28, 2010 8:19 pm

Cece wrote:I do not think Lyon's job is relevant to any discussion at any time here on this board. I have said this before too, I find it strangely upsetting, it comes across as an attempt to cut him down to size.

If it is ok to use "Lyon is a gardener" as a way to make a point, then it would be ok to use "Cece is a stay-at-home mom and, frankly, not such a good one" too. (And so that there is no confusion, I am saying that it is not ok to use either of those arguments.)


Cece I will say if I ever had a vote for someone to moderate this forum it would be you. Although you believe firmly in CCSVI you always are willing to listen to others and I do not ever remember you getting personal. When there is a cure for MS I want to sit down with you, Bob, concerned, and even 1eye(love his sarcasm) and have a beer or two. I could not think of a better group of people that have been along for my MS "ride". Funny how others do not get what we actually go through. You and some of the others that accept my rambling, whining, and thoughts keep me sane!!!
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Postby Talisker » Tue Dec 28, 2010 8:36 pm

NHE just read this thread and your post made me laugh.
Bob is a gardener.
Talk about a brutal post. I must have a sick sense of humour.
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Postby NotFound » Tue Dec 28, 2010 9:00 pm

Cece wrote:I do not think Lyon's job is relevant to any discussion at any time here on this board. I have said this before too, I find it strangely upsetting, it comes across as an attempt to cut him down to size.

If it is ok to use "Lyon is a gardener" as a way to make a point, then it would be ok to use "Cece is a stay-at-home mom and, frankly, not such a good one" too. (And so that there is no confusion, I am saying that it is not ok to use either of those arguments.)


Hold on a second. Nobody was using it as a put down. Why would being a gardener serve as a put-down anyway?

It was the answer to my (granted, "non-researched") inquiry about WHY Lyon was interested in MS, one of my suppositions was that he is involved in research, which was proven incorrect by pointing out that he does gardening and not research...

What's wrong with the answer though?
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