A treatment for multiple sclerosis that upsets Big Pharma

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

A treatment for multiple sclerosis that upsets Big Pharma

Postby erinc14 » Fri Jul 16, 2010 5:50 am

Despite the results of Zamboni's and other significant studies, my research into the media's coverage of angioplasty as a treatment for multiple sclerosis reveals that the mainstream media, with some notable exceptions (examples of which are here, here and here) , is generally presenting arguments that are favourable to maintaining the pharmaceuticals' monopoly on treatment options (examples here, here and here). Overall, the media has failed to do its journalistic duty to research all sides of the issue. They have failed to take the numerous testimonials and positive research results seriously and are failing to take into account the costs and benefits of angioplasty versus those of MS drugs that in the end offer little to no long-term benefits.

http://rabble.ca/news/2010/07/treatment ... en-its-due
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Let's Promote CCSVI

Postby MarkW » Fri Jul 16, 2010 8:53 am

Two comments:
1 - Daily Telegraph on Mon 12 - Its a turf war - full page 23). Part of
Liz Hunt's article is available online:
www.telegraph.co.uk/health/7882358/Can- ... elief.html
2 - fight winable battles - the right to choose CCSVI - not big pharm.

Kind regards,
MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Postby cheerleader » Fri Jul 16, 2010 9:18 am

thanks for posting over here, erin.
I found it this am and posted on Facebook. I think it's a very well-reasoned editorial, but of course I would. Because I've seen evidence of CCSVI in someone I love. Mark W has seen it in his own body. And Philip wants to have it diagnosed in his wife.

I was told in Bologna last September, by a doctor who didn't know who I was or why I was there, (he only saw an unattached woman at a medical conference) that CCSVI proponents were "zealots." And, to this particular doctor, who compiles research and does not personally know anyone with MS ("MS patients are numbers to me, Joan" was another memorable quote)--it was going to take a lot more information to make him a "believer." But he sincerely hoped this wasn't real, or he was "out of a job."

I believe the hurdle is lack of published research. And the frustration is that none of us can accomplish this. We need more doctors studying CCSVI treatment--like the current study at BNAC. Until there is more published research, the press is going to remain cool. Even though it's more than obvious to thousands of pwMS and their loved ones who have seen that CCSVI real---to those for whom pwMS are simply "numbers"---there's simply not enough science.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby scorpion » Fri Jul 16, 2010 11:05 am

cheerleader wrote:thanks for posting over here, erin.
I found it this am and posted on Facebook. I think it's a very well-reasoned editorial, but of course I would. Because I've seen evidence of CCSVI in someone I love. Mark W has seen it in his own body. And Philip wants to have it diagnosed in his wife.

I was told in Bologna last September, by a doctor who didn't know who I was or why I was there, (he only saw an unattached woman at a medical conference) that CCSVI proponents were "zealots." And, to this particular doctor, who compiles research and does not personally know anyone with MS ("MS patients are numbers to me, Joan" was another memorable quote)--it was going to take a lot more information to make him a "believer." But he sincerely hoped this wasn't real, or he was "out of a job."

I believe the hurdle is lack of published research. And the frustration is that none of us can accomplish this. We need more doctors studying CCSVI treatment--like the current study at BNAC. Until there is more published research, the press is going to remain cool. Even though it's more than obvious to thousands of pwMS and their loved ones who have seen that CCSVI real---to those for whom pwMS are simply "numbers"---there's simply not enough science.
cheer


Let me get this straight. A doctor randomly approached you at a conference, called you by your first name,,called people who are intersted in CCSVI zealots, told you he only looked at MS patients as numbers, and also told you he hoped CCSVI was not real so that he would not be out of a job??? Sounds rational.....
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Postby PCakes » Fri Jul 16, 2010 11:12 am

Social grace.. you introduce yourself..
Scorpion, please.. show some respect..
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Postby erinc14 » Fri Jul 16, 2010 11:38 am

i recall a few months ago a CBC news anchor led a negative take on this with "and do YOU want to pay for it'...obviously trying to sway public opinion against it.

and about 2 months after CTV broke the story on W5 their news station in Ottawa had a massive fire.
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Postby cheerleader » Fri Jul 16, 2010 12:14 pm

We had name tags, scorp. Just first and last names, no affiliations. He talked to me for over an hour. Everyone saw us sitting together at dinner.
We also discussed food, wine, the city of Bologna along with medicine and MS. There are other memorable quotes....but that's all you get---he found out why I was there during dessert.
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Last edited by cheerleader on Fri Jul 16, 2010 12:37 pm, edited 1 time in total.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Rokkit » Fri Jul 16, 2010 12:36 pm

Scorpion, do you have any constructive purpose whatsoever for being here?
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Postby cheerleader » Fri Jul 16, 2010 12:40 pm

Rokkit wrote:Scorpion, do you have any constructive purpose whatsoever for being here?


Scorpion has many wonderful posts in the stem cell section--he happens to find me and my research into CCSVI to be misguided, rokkit. Whatever. I just try to answer his questions-
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby CCSVIhusband » Fri Jul 16, 2010 1:07 pm

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Postby scorpion » Fri Jul 16, 2010 1:13 pm

cheerleader wrote:
Rokkit wrote:Scorpion, do you have any constructive purpose whatsoever for being here?


Scorpion has many wonderful posts in the stem cell section--he happens to find me and my research into CCSVI to be misguided, rokkit. Whatever. I just try to answer his questions-


Not misguided Cheer, just a little over rambunctious. What you posted makes more sense Cheer. I am sure there are doctors out there that think that way but how sad for them. Rokkit I have been referred to as one of the septic skeptics but I have been trying to tone it down to no avail. Unfortunately people make it sound as though I have some vendetta against CCSVI which is not true. I have MS so if it turned out so CCSVI was legit I would benefit from any future treatments related to CCSVI. Cheer you and your husband sound like someone I would like to have a beer with after work but I think we would need to stay off the topic of CCSVI!
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Postby Lyon » Fri Jul 16, 2010 1:14 pm

.
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Postby CCSVIhusband » Fri Jul 16, 2010 1:23 pm

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Postby scorpion » Fri Jul 16, 2010 1:23 pm

[quote="CCSVIhusband"]He hangs out in this swings area of the playground (CCSVI forum) because it's the busiest on the board ... NOBODY plays with him in his sandbox (stem-cells forum) because it's all stuff that's 15 years down the road (at least) ... plus cats bury their poop in sandboxes.

If he didn't come here, nobody would talk to him or acknowledge he was a member of this board ...
).

He only comes to this board to stir up something and take away focus from actual CCSVI "banter" with his focus on "people's opinions" or "where has that been provens".

OK, back to focusing on that article because it was a good one (IMO)[/q






That must be it. And here I thought I was perceived as a voice of reason. Silly me.
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Postby patientx » Fri Jul 16, 2010 1:24 pm

The editorial contains many misguided and misleading statements, but you can start with the title for one example:

"A treatment for multiple sclerosis that upsets Big Pharma," yet article doesn't contain one example of a drug company's position on CCSVI, nor any drug company efforts to undermine research into it.
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