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Posted: Tue Nov 02, 2010 11:56 am
by CCSVIhusband
^ agreed ...
I'll do ... and have done, the same.
Yet, I got no sort of, great, your wife had good results after venoplasty ... yet most of them always tell the people who had negative results (or saw no results) ... KEEP POSTING ... IT'S IMPORTANT.
Tells you what kind of people they are, and what they are hoping for.
"When a true genius appears in the world, you may know him by this sign, that the dunces are all in confederacy against him." - Jonathan Swift
Zamboni = a top vascular researcher ... (some could say "genius")
you can figure the rest out.
Re: WARNING on Lyon, Malden, Motiak, Concerned, Scorpion et
Posted: Tue Nov 02, 2010 12:04 pm
by patientx
MarkW wrote:If you want to find out about real peoples experiences on CCSVI then I advise that you disregard posts by Lyon, Malden. Motiak, Concerned, Scorpion et al. These posters rubbish any supportive information concerning de-stenosis therapy. However they rarely present alternative information.
I gave one example, which was rubbished by the gang of nay-sayers:
- 2000 people with MS have received diagnosis and therapy with venoplasty.
The nay-sayers do not provide any information (its only 500 not 2000 for example).
Once I supported my case the nay-sayers do not ackowledge the accuracy of my information, just nay-say on something else.
So what is the percentage where MS progression has continued ??
Lets have an answer from the nay-sayers.
I repeat:
Early adoptors take a risk in having an invasive selective venogram and balloon venoplasty when only 2000 others have done this already. The amount of risk you are prepared to take is personal.
Being an early adoptor of any novel medical therapy is not without risk, but MS progression was a greater risk for me after my analysis of the facts. Its your personal decision to take without cast iron guarantees and at a cost around 10-15K USD.
I am a health professional and experienced business analyst and I am prepared to post my name, professional experience and my MS story for all to see. Lyon, Malden. Motiak, Concerned, Scorpion et al hide behind their pen names, ask yourself why you should trust them
Kind regards to all seekers after facts,
MarkW
Maybe you could just tell us where you are getting your numbers (2000 procedures completed worldwide, 90% of patients with cessation of progression).
Posted: Tue Nov 02, 2010 12:07 pm
by Motiak
If we don't want to talk about pen names we can talk about real names. My name is David Catchings. I am 24 years old and I have multiple sclerosis. I was diagnosed 1 month before my first child was born because of optic neuritis and pain in my left eye. I believe there is a strong correlation between multiple sclerosis and CCSVI. I don't believe the findings of this study because it is a very small sample size and they do not jive with other research that I read. I also don't believe in creating random statistics without facts.
I don't feel like CCSVI still needs to be proved because I feel like we have enough of a body of information out there to know that it is real. I also trust the studies that have shown that CCSVI prevalence is much greater in MS patients than in controls. I think a big problem with CCSVI and the way it is currently handled is our inadequate treatment options. There is too much restenosis with balloon treatment and the possibility of stent migration and clotting while rare isn't comforting. That's about all I have to say. How about next time you read what I say instead of calling me rubbish.
Posted: Tue Nov 02, 2010 12:28 pm
by Lyon
Motiak wrote:That's about all I have to say. How about next time you read what I say instead of calling me rubbish.
Sorry that you said the wrong thing to the wrong person at the wrong time and got lumped in with the naysayers, but it was good having you among our ilk, if only for a short time
Posted: Tue Nov 02, 2010 12:49 pm
by Jugular
MrSuccess wrote:jugular - what planet are you living on ? I would take MarkW's advice .
Have YOU actually read the content [ or actually LACK of
of content ] those - thankfully few - posters try to pass off
as intelligent skeptical questions ?
They make '' Moose '' .... look like a rocket scientist .
I would suggest you focus on the posts of the brighter lights
here at TIMS . A suggested list can be made available .
The older wiser TIMS posters have long ago washed their hands
free of these odious fools .
Mr. Success
I guess, Mr. Success, that since I've had some success on this planet by trying to inform myself as best I could by examining all sides of an issue and subjecting both to the same unflinching eye of truth, I shall continue in my folly. As such I must respectfully decline your kind offer to provide me with a pre-approved list of luminaries who are safe for my viewing and continue to seek good guidance and counsel from wherever it might be found instead of limiting myself to only those who may happen to agree with me or share my world view.
Posted: Tue Nov 02, 2010 3:00 pm
by MrSuccess
PX - 2000 treated World Wide ..... Dr. Dake ....mskateer fundraising video ....
btw .... I still hate that name .... mousekateer
90 % ? ...... probably a rule of thumb
could be 89 or 91
shall I reprint your last post ? remember ?
Yeah ..... thanks for bringing that to my attention ......
Let's not split hairs on the numbers ........ just saying .....
Mr. Success
Re: WARNING on Lyon, Malden, Concerned, Scorpion et al
Posted: Tue Nov 02, 2010 3:12 pm
by concerned
MarkW wrote:If you want to find out about real peoples experiences on CCSVI then I advise that you disregard posts by Lyon, Malden. Concerned, Scorpion et al. These posters rubbish any supportive information concerning de-stenosis therapy. However they rarely present alternative information.
I gave one example, which was rubbished by the gang of nay-sayers:
- 2000 people with MS have received diagnosis and therapy with venoplasty.
The nay-sayers do not provide any information (its only 500 not 2000 for example).
Once I supported my case the nay-sayers do not ackowledge the accuracy of my information, just nay-say on something else.
So what is the percentage where MS progression has continued ??
Lets have an answer from the nay-sayers.
I repeat:
Early adoptors take a risk in having an invasive selective venogram and balloon venoplasty when only 2000 others have done this already. The amount of risk you are prepared to take is personal.
Being an early adoptor of any novel medical therapy is not without risk, but MS progression was a greater risk for me after my analysis of the facts. Its your personal decision to take without cast iron guarantees and at a cost around 10-15K USD.
I am a health professional and experienced business analyst and I am prepared to post my name, professional experience and my MS story for all to see. Lyon, Malden, Concerned, Scorpion et al hide behind their pen names, ask yourself why you should trust them
Kind regards to all seekers after facts,
and apologies to Motiak.
MarkW
My name is Jordan Z.
Now were equally hidden behind pen names.
Now, please try to stick to discussing the issues, not the people who get you all hot and bothered.
PS also, I asked you about the ten percent number, not the 2000 number, which I figure is probably a ball-park as-far-as-we-know kind of estimate.
Posted: Tue Nov 02, 2010 3:14 pm
by MrSuccess
jughead- how refreshing to hear how you are so interested in the science of CCSVI ...... and less so on meer opinions .
If it's science you seek ...... you won't get much - if any -from Bob Lyon .
You must be new . How else could you have possibly missed out on all the great scientific discussion , here at TIMS ?
Incredibly , you state an interest and support in the opinions of a tiny fraction of TIMS wackadoodle posters.
Some say ..... this group may possibly be the same person ....
I think that idea has some merit .
Once again ..... filter out the w- a - d posters and their continual non-stop efforts to anger people .
There is lot's of science in this major discovery to read about.
Mr. Success
Posted: Tue Nov 02, 2010 3:27 pm
by Lyon
MrSuccess wrote: jughead-Once again ..... filter out the w- a - d posters and their continual non-stop efforts to anger people .
Mr. Success
OMG, STOP! Yer killin' me!
Posted: Tue Nov 02, 2010 3:29 pm
by jimmylegs
rules of the board (my emphasis added)
Posted: Fri Jun 25, 2004 4:44 pm Post subject:
Posted by: Arron
Just a friendly reminder: We love the debating that's been going on lately because it forces people to think critically and challenge their own beliefs.
However, there can be too much of a good thing. If you disagree with someone, please succinctly state why and let it go at that. Point, counterpoint, counter-counter point, etc. is not useful-- the reality is that after the first disagreement, you will rarely convince another of something they feel strongly about unless you have shocking new information to share. The drawn-out debates also turn people off from reading the messages in the first place. If you really have to get something off your chest, please send that person a Private Message-- there is no need to have a long argument in public.
For the most part, everything on the board so far is just fine, but I want to keep it that way. We are all in this fight together; Let's focus all of our energies on trying to beat MS into submission, not each other. Smile
If you disagree with what I said (how ironic!), please drop me a private message. However, I have received enough comments from members that are in support of the above to feel confident about what I just posted.