the facebook treatment

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

Postby 1eye » Thu Mar 31, 2011 10:17 am

Blossom, David1949, jimmylegs, scorpion, I guess there might be one opinion we have in common...
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Sydeny Morning Herald article

Postby hwebb » Thu Mar 31, 2011 1:41 pm

Hi Scorp - thanks for the promotion of this article!

Lots of newcomers are looking at the CCSVI Australia Facebook site since it's publication.

Not sure if you could say that the people who write on CCSVI Australia are "anonymous". We all appear in public regularly, arranging and attending awareness events. Have personally written to countless media outlets and politicians to raise awareness of this issue. The CCSVI Australia administrators are available anytime the media would like to cover the CCSVI issue.

Helen
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Re: Sydeny Morning Herald article

Postby scorpion » Thu Mar 31, 2011 6:35 pm

hwebb wrote:Hi Scorp - thanks for the promotion of this article!

Lots of newcomers are looking at the CCSVI Australia Facebook site since it's publication.

Not sure if you could say that the people who write on CCSVI Australia are "anonymous". We all appear in public regularly, arranging and attending awareness events. Have personally written to countless media outlets and politicians to raise awareness of this issue. The CCSVI Australia administrators are available anytime the media would like to cover the CCSVI issue.

Helen


I am not quite sure what CCSVI Australia is but hey no problem. I guess I will keep an eye out for you guys but I must warn you to be wary of chemotherapy Australia for they are quite toxic!
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Re: the facebook treatment

Postby Brainteaser » Sun Apr 03, 2011 4:12 am

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.

This quote was from a newspaper article, apparently being relied upon by the author of this thread and directed cynically towards the bona fides of those involved with CCSVI Australia.

But what about the second leg of the quote? Thisisms has been disparaged also. Have neurologists been named and shamed on this site? Reading the thread, it seems as if the member commencing the thread has been primarily motivated in putting the boots into CCSVI Australia rather than keeping things in perspective about a newspaper article where this site is attacked also.
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Re: the facebook treatment

Postby scorpion » Sun Apr 03, 2011 6:02 am

Brainteaser wrote:
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.

This quote was from a newspaper article, apparently being relied upon by the author of this thread and directed cynically towards the bona fides of those involved with CCSVI Australia.

But what about the second leg of the quote? Thisisms has been disparaged also. Have neurologists been named and shamed on this site? Reading the thread, it seems as if the member commencing the thread has been primarily motivated in putting the boots into CCSVI Australia rather than keeping things in perspective about a newspaper article where this site is attacked also.


Very dramatic post!!!! It dosen't seem to me that Thisisms has been disparaged in the article and yes neurologists have been named on this site and yes there have been some not so nice things said about them. Honestly I do no see a problem with neurologists being singled out by name as long as there are no threats against them, veiled or otherwise. No Brainteaser I have no interest in putting the boots in CCSVI Australia or anything else related to CCSVI, just waiting for some answers. I did go through a country music phase when I was 12 and bought a nice pair of cowboy boots but at this point in my life I am pretty much "bootless".
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Postby jay123 » Mon Apr 04, 2011 4:40 pm

My neuro told me this week that he is not happy with the AAN. They are having their annual convention this week (in Hawaii, of course!) and they actually rejected all papers with positive CCSVI results! They only accepted negative studies. he also mentioned that they have been getting the same answer from many neuro journals.
Seems to me there is a group of doctors getting a little worried about their bread and butter!!
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Postby scorpion » Mon Apr 04, 2011 5:50 pm

jay123 wrote:My neuro told me this week that he is not happy with the AAN. They are having their annual convention this week (in Hawaii, of course!) and they actually rejected all papers with positive CCSVI results! They only accepted negative studies. he also mentioned that they have been getting the same answer from many neuro journals.
Seems to me there is a group of doctors getting a little worried about their bread and butter!!


I have never gotten the logic saying that if CCSVI turns out to be legit it will somehow effect the earning power of doctors/neuros. Although MS is increasing in incidence across the U.S., there are thousands of other disease/disorders that neuros treat. If what your neuro is saying is true I would be interested in knowing why the AAN is rejecting papers with positive CCSVI results. Maybe they are not convinced that the methodology used by the researchers proves a connection between CCSVI and MS?
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Postby Lyon » Mon Apr 04, 2011 6:05 pm

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Last edited by Lyon on Wed Jun 22, 2011 5:20 pm, edited 1 time in total.
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Re: the facebook treatment

Postby Salvatore24 » Mon Apr 04, 2011 8:10 pm

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


Yes, sooooo exciting :roll:

No negative CCSVI headlines in the US? Needed to branch out to Australian newspapers?
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Postby jay123 » Mon Apr 04, 2011 8:14 pm

I figured that would be the answers from you two. I was actually sending that out to people to read who actually have open minds.
If you two are such jerks that you spend so much time blasting this theory, wouldn't it be more productive to spend time actually researching something you think is positive?
I can understand skepticism, but to spend a year putting down a theory is kind of extreme. and signifies that you need some professional help.
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Postby Brainteaser » Tue Apr 05, 2011 1:12 am

Lyon wrote:If the world really is so full of devious people as the Neuros and Pharmas are reputed to be, the battle is probably already lost anyway.

'Self interest' is the term. You must be acquainted with that.
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Re: the facebook treatment

Postby Brainteaser » Tue Apr 05, 2011 1:29 am

scorpion wrote:Honestly I do no see a problem with neurologists being singled out by name as long as there are no threats against them, veiled or otherwise.

I haven't seen any neurologists embarrassed or attacked on sites, certainly not Aussie neuros which was the point of the newspaper slant. There were a couple of Canadian neuros who came out fighting a while back. Most MSers are rational, reasonable people who I think would welcome the involvement of neuros on sites like this to objectively discuss CCSVI.
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Postby Lyon » Tue Apr 05, 2011 2:21 am

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Last edited by Lyon on Wed Jun 22, 2011 5:20 pm, edited 1 time in total.
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Postby 1eye » Tue Apr 05, 2011 3:07 am

Lyon wrote:This must be a little of what that Australian newspaper article was hinting on eh Scorpion?

Intelligent lot too when all you have to do is dig a hole and not bother to cover it with sticks and leaves.


Could you be a little more clear, please? There might be adults listening.
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CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby Brainteaser » Tue Apr 05, 2011 4:43 am

1eye wrote:Could you be a little more clear, please?

I think what is being said is that intelligent discussion on this site rests with just two members.
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