Our NMSS and a puzzling review of CCSVI

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

Postby JoyIsMyStrength » Thu Jan 07, 2010 6:25 pm

Even if there was a death, which I don't believe there was, how many deaths have been attributed to Tysabri? Just sayin'.
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Postby jay123 » Thu Jan 07, 2010 6:26 pm

..and to continue my point, don't you think this has to be fake? Would they really hire an incompetent public relations/press guy who would send a note like that to a forum as popular as this just signed "Arnie"?

Can one of our admin's take a look at the ip address the post came from and see if it is from "Arnie's" work location?

They can plug the address right in here and find out where it was posted from -
http://www.ip-adress.com/ip_tracer/
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Postby Mechanicallyinclined » Thu Jan 07, 2010 6:40 pm

Sorry Jay I did misread that.
Welcome to Canada when you come eh! I'm going where its warmer lol
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Postby mangio » Thu Jan 07, 2010 7:07 pm

Jay,
I liked your clever post and got what you meant. The only thing as bad
as a cold grey winter prairie day is the depressing
relentless rain and grey West Coast skies in February. Pray for some
beautiful Florida Sunshine if they are headed to B.C.
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Postby vendredi5h » Thu Jan 07, 2010 7:07 pm

Well, I have say something here...

Why are we even talking about NMSS (or MS Canada) here? It's like we are considering them as leaders or important. I think we must see them as, at best, helpers. I mean, just read the posts on this forum and you'll feel all the energy of leadership, momentum. When NMSS came into the picture it is always as a weight in this momentum. Just stop mentioning them. Maybe, in bonus, we'll learn in june that a sizable donation have been made to one of the almost completed project. If not, so what?! I just don't want this kind of cancerous entity infecting the dynamism of the MS community regarding CCSVI. We need so much energy to keep working on that fight.

Just ask yourself why NMSS mentioned this death. It is just to say "We told you so! Don't get too excited." What?!! We have to get rid of this sh**! We have to stay excited, full of life, hope, action. Even if it were true, they could replace this statement by something like: "One person died after recieving a very promising procedure that will maybe one day prevent the 100 death we had this week consequence of MS. The protocol have been securized and we keep going."

There is so much nice people and groups related to CCSVI full of dynamism that are worth mentioning, talking about, helping. That is with them that we should spend our energy.

Oh! I feel great now! :D ;o)

Yannick
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Postby mangio » Thu Jan 07, 2010 7:16 pm

Anyone,
Where is Bryd Center? and does anyone know what was officially the
cause of death of the woman (Holly)? thanks mangio
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Postby magoo » Thu Jan 07, 2010 7:21 pm

Yannick,
I'm sorry you feel this is so negative. I happen to feel it is important to know since so many doctors and MSers look to the NMSS as a resource.
We need to look at all sources of information on CCSVI and insist they remain honest and accurate. This can only help our cause. Believe me, no one is more excited to scream and yell the praises of CCSVI than me! I am living proof that it works.
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby SandyK » Thu Jan 07, 2010 7:29 pm

I received an email from my NMSS chapter asking if I would be a team captain again this year for their walk and here is my emailed response:

I imagine you've already received a few replies like this one. I cannot in good conscience support the MS Society after their behavior over the last year regarding CCSVI research and its corresponding experimental procedure. The fact that the NMSS kept silent in the early months was bad enough, but after they were forced to publicly acknowledge the condition they immediately attacked it as pure bunk. When asked for evidence supporting this charge, they then admitted that there was no definitive research.

The NMSS is supposed to be a light in the darkness, the spearhead in bringing an end to the terrible disease I live with day in and day out. They should be eager and excited to explore all possibilities and here they cried foul and then they admit to having insufficient data. One explanation offered is that they have been trying to guard against people developing a false hope only to be let down. I will happily explain the concept of "false hope" to any NMSS official who has the time, starting with all the ineffective treatments they have endorsed over the years.

Stents and angioplasty are not new developments in the world of medicine but they are being attacked with a fervor that borders on religious persecution. Tysabri, an NMSS favorite, has killed 28 people so far; this procedure has killed none. One woman has died after having the procedure because of completely unrelated conditions, but she seems to have become the NMSS poster child in the charge against looking at MS from a vascular standpoint instead of an autoimmune one (a notable hypocrisy considering that no firm evidence has been presented showing MS to be autoimmune in nature).

You cannot imagine how angry, frustrated, and disappointed I am at how things are developing. Adding insult to injury, I've recently read that the grant being put together by the NMSS is for a miserable $100K and won't be awarded until nearly six months from now. I don't fault NMSS for failing to find a cure or an effective treatment, but I will not support any organization that actively stands in the way of finding one.

Sincerely,
Sandy Nelson

Diagnosed 1994, Self EDSS is 6.5
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Postby Johnson » Thu Jan 07, 2010 7:41 pm

Nicely written, SandyK.
My name is not really Johnson. MSed up since 1993
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SPOKE WITH ARNEY........

Postby leetz » Thu Jan 07, 2010 7:42 pm

SHE IS REAL.......VERY NICE ACTUALLY...spent at least a half hour on the phone with her advocating for CCSVI...started out the conversation VERY angry, ended the conversation in tear's. I was assured that the society is going to advocate for us---I found myself testing her knowledge to see if she was infact whom she said she was(I believe she is). She was given my name, number and e-mail address if she needed to contact me for any reason. She seemed concerned and stated that she has a very close friend who suffer's from MS, I explained that having a "friend" with MS is alot different than having MS.

Let's give her a chance and see what she can do as far as publicity concerning CCSVI---

you can give her a call at #212-476-0436******CALL AND ADVOCATE****
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
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Postby JoyIsMyStrength » Thu Jan 07, 2010 7:45 pm

Bravo Sandy! What an articulate, intelligent email. I hope it hits its target.

My favorite part:

One explanation offered is that they have been trying to guard against people developing a false hope only to be let down. I will happily explain the concept of "false hope" to any NMSS official who has the time, starting with all the ineffective treatments they have endorsed over the years.


Brilliant!

Pam-Joy
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Postby scorpion » Thu Jan 07, 2010 7:57 pm

I thought it was nice for someone from the NMSS to address everyones conerns but I guess not. Well my friends because I have MS I hope there is some truth to what you believe but if not I must say you will all look like asses. Thanks Arnie.
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Postby bestadmom » Thu Jan 07, 2010 8:12 pm

SandyK, you are one heck of a writer. I hope it stings when they read it (if they read it).
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Postby Brynn » Thu Jan 07, 2010 8:16 pm

Fabulous response, Sandy. They will learn that the support of their "constituents" is a bit more relavent than they were thinking, when they no longer have it. Brynn
Last edited by Brynn on Fri Jan 08, 2010 11:39 am, edited 1 time in total.
41 years old, dx 1998, current EDSS 6.5
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Postby mangio » Thu Jan 07, 2010 8:48 pm

SandyK,
Spot on.
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