This Is MS Multiple Sclerosis Community: Knowledge & Support

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!

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Boyfriend dx'd 6-6-06!!! RRMS............CCSVI procedure done on Nov. 13, 2010 and March 7, 2011 by Dr. Sclafani!

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:

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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!



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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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.

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

Nice. A moderator getting personal.

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!!!

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.

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?