the facebook treatment

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

the facebook treatment

Postby scorpion » Wed Mar 30, 2011 12:50 pm

How exciting. This should really pick up the traffic on MS or make people run the other way.

On the Australian Facebook page and other internet forums such as thisisms.com, neurologists are referred to by name and accused of ignoring evidence proving Zamboni's theory. A commonly expressed view is that neurologists are in the pockets of drug companies and are therefore unwilling to consider non-drug treatments. The reasoning is that if CCSVI is the cause of MS, it can be cured and drug companies will stop making money.


Here is the entire article:

http://www.smh.com.au/world/science/the ... 1cgfi.html
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Postby ikulo » Wed Mar 30, 2011 1:38 pm

I doubt these doctors care about what random, anonymous people say about them on the internet anymore than the drug companies care.

Whether or not these doctors are in the pockets of drug companies is really just an issue of semantics. Some call them "consulting fees," others call them "bribes." Tomatoes, tomah-toes.
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Postby Lyon » Wed Mar 30, 2011 1:47 pm

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Last edited by Lyon on Wed Jun 22, 2011 4:18 pm, edited 1 time in total.
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Postby scorpion » Wed Mar 30, 2011 2:38 pm

He(Zamboni) believes the negative results of other groups are also a result of bias and that people unwilling to find an association will manage to avoid finding one. But sceptics say this argument runs both ways: his(Zamboni) group is clearly invested in finding an association and might therefore be biased in favour of finding one.[quote]

Interesting point
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Postby Shannon » Wed Mar 30, 2011 2:49 pm

Oh, they do care. I know of comments stemming from my own experience with a local neurologist that had to be removed because the page owner was contacted by him.
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Postby scorpion » Wed Mar 30, 2011 2:59 pm

Shannon wrote:Oh, they do care. I know of comments stemming from my own experience with a local neurologist that had to be removed because the page owner was contacted by him.


Hey Shannon I am not sure what you mean by that statement. Sorry long day....
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Postby ikulo » Wed Mar 30, 2011 3:13 pm

Scorp - I think she means that a local neurologist contacted a website specifically to remove messages/posts that criticized him/her.
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Postby Shannon » Wed Mar 30, 2011 3:33 pm

That's correct. The information was factual, taken from his own words at an event in which he was hosting (funded by a major drug company, of course). He had likened CCSVI to bee venom therapy, and basically showed no interest or respect for those inquiring about it during the presentation. The take home message of the night was basically how "dangerous" the procedure was. I guess maybe it wasn't the right time or place to discuss it that night, but like I said, they definately do care when their names are mentioned at random sites like facebook or on blogs. Even when their own words are being relayed, they do care!
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Postby scorpion » Wed Mar 30, 2011 4:48 pm

Shannon wrote:That's correct. The information was factual, taken from his own words at an event in which he was hosting (funded by a major drug company, of course). He had likened CCSVI to bee venom therapy, and basically showed no interest or respect for those inquiring about it during the presentation. The take home message of the night was basically how "dangerous" the procedure was. I guess maybe it wasn't the right time or place to discuss it that night, but like I said, they definately do care when their names are mentioned at random sites like facebook or on blogs. Even when their own words are being relayed, they do care!


There have been people who have been threatened for saying what they feel about CCSVI so who can blame neuros? The lines have pretty much been drawn. If you are a neuro and you accept CCSVI you are accepted as a hero but if you question it or ask critical questions about the validity of CCSVI you are an uncaring pharma lovin' son of a gun. I do think that people who feel very strongly about the future of CCSVI should have a conversation with their neurologist about their expectation for treatment, especially if they plan on choosing angioplasty in the future.
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Postby Cece » Wed Mar 30, 2011 5:52 pm

There was a condescending quote from a neuro: "The things they used to do, like rub lotions on themselves or (bee stings), didn't hurt them."

We are just a bunch of well-moisturized bee-stung fools, now with restored blood flow!
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Postby David1949 » Wed Mar 30, 2011 7:56 pm

Some questions for the neuros:
1) Can you cure MS? No?
2) Can you seriously slow down the progression of the disease? No?
3) Do the disease modifying drugs you prescribe have negative side effects? Minor things like PML and death?
4) Do the DMD's work for people who have non-relapsing remitting MS? No?
5) How does the cost of the DMDs compare to the liberation procedure? More expensive?

If the neuros had something worthwhile to offer, people would probably not be interested in Liberation.

In 15 years with MS I've never taken their drugs and I've never regretted that decision. I haven't seen a neuro in 7 years and I don't regret that either.

Neuros when you can cure me give me a call, but I won't hold my breath waiting.
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ccsvi

Postby blossom » Wed Mar 30, 2011 8:08 pm

david1949, yep, i feel the same way.
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Postby CureIous » Wed Mar 30, 2011 8:19 pm

Here we go again, "stuff said on internet via anonymous postings are ascribed worldwide import", requiring an immediate response to the "crisis".

Somehow, I think the neurologists, and the pharma companies will be just fine, so they lose a couple collective billion , nothing to sneeze at, but they will survive, there's plenty of nails around for their hammers to hit...
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby scorpion » Wed Mar 30, 2011 9:24 pm

David1949 wrote:Some questions for the neuros:
1) Can you cure MS? No?
2) Can you seriously slow down the progression of the disease? No?
3) Do the disease modifying drugs you prescribe have negative side effects? Minor things like PML and death?
4) Do the DMD's work for people who have non-relapsing remitting MS? No?
5) How does the cost of the DMDs compare to the liberation procedure? More expensive?

If the neuros had something worthwhile to offer, people would probably not be interested in Liberation.
In 15 years with MS I've never taken their drugs and I've never regretted that decision. I haven't seen a neuro in 7 years and I don't regret that either.

Neuros when you can cure me give me a call, but I won't hold my breath waiting.


That I agree with.
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Postby jimmylegs » Thu Mar 31, 2011 5:30 am

groundbreaking stuff here...
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