People power: social media can alter research priorities

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

People power: social media can alter research priorities

Postby MSUK » Thu Apr 28, 2011 1:09 am

Image

Widespread demands in Canada for clinical trials for a controversial treatment for multiple sclerosis show the growing power of the Internet and social media to influence research priorities, according to a paper published April 27 in Nature.

Paulo Zamboni, an Italian surgeon, suggested in 2008 that MS was not an autoimmune disease but rather a vascular disease caused by blockages in the brain. He proposed unblocking the veins by mechanically widening them — what he calls the “liberation procedure.”


His hypothesis got little public attention, except in Canada, where more than 500 Facebook pages, groups or events devoted to the theory have been created with tens of thousands of followers. A poll shows more than half of Canadians are familiar with the theory. Stories about it have appeared in the media almost weekly since The Globe and Mail, a national newspaper, wrote about it in November 2009 and it was featured on the CTV public affairs program W5.... Read More - http://www.msrc.co.uk/index.cfm/fuseact ... ageid/2954
MS-UK - http://www.ms-uk.org/
User avatar
MSUK
Family Elder
 
Posts: 2092
Joined: Wed Oct 14, 2009 3:00 pm

Advertisement

Postby Leonard » Thu Apr 28, 2011 2:13 am

We (that is all the patients united on this forum) make a fatal mistake by consistently pushing forward this idea that the cause is vascular; and by continuing to fuel the debate of vascular vs auto-immunity. In fact, it is neither of the two. It is the metabolism or better the unbalances in the metabolism. The venous strictures may be an important contributing factor to these inbalances but it is the imbalances of the metabolism that cause the MS. I have said it here before: the endocrinologists (those doctors specialised in micro-cellular feeding) must be part of this debate. See also: http://www.thisisms.com/ftopic-15188-120.html
User avatar
Leonard
Family Elder
 
Posts: 617
Joined: Fri Dec 18, 2009 4:00 pm
Location: Brussels, Capital of Europe

Re: endocrinology

Postby NHE » Thu Apr 28, 2011 2:35 am

Leonard wrote:The venous strictures may be an important contributing factor to these inbalances but it is the imbalances of the metabolism that cause the MS. I have said it here before: the endocrinologists (those doctors specialised in micro-cellular feeding) must be part of this debate.


An endocrinologist is someone who studies or treats hormone related issues.


NHE
User avatar
NHE
Volunteer Moderator
 
Posts: 3246
Joined: Sat Nov 20, 2004 4:00 pm

Postby Algis » Thu Apr 28, 2011 3:22 am

In fact, it is neither of the two. It is the metabolism or better the unbalances in the metabolism.


Not any of the three... The truth is that MS is an act of God; to punish all of you Damned faithless suckers for your sins... REPENT... Or else...

8)
User avatar
Algis
Family Elder
 
Posts: 783
Joined: Sat Nov 21, 2009 4:00 pm
Location: XinDian, Taiwan

Postby codefellow » Thu Apr 28, 2011 7:56 am

Leonard wrote:We (that is all the patients united on this forum) make a fatal mistake by consistently pushing forward this idea that the cause is vascular; and by continuing to fuel the debate of vascular vs auto-immunity. In fact, it is neither of the two. It is the metabolism or better the unbalances in the metabolism. The venous strictures may be an important contributing factor to these inbalances but it is the imbalances of the metabolism that cause the MS. I have said it here before: the endocrinologists (those doctors specialised in micro-cellular feeding) must be part of this debate. See also: http://www.thisisms.com/ftopic-15188-120.html


I do not see that happening unless we see a family member of an endocrinologist get MS and he/she decides to investigate the subject and then receives the same amount of success and subsequent publicity for his/her work as Zamboni.
User avatar
codefellow
Family Elder
 
Posts: 120
Joined: Tue Nov 18, 2008 4:00 pm

Postby 1eye » Thu Apr 28, 2011 8:10 am

Oh, dang. Another fatal mistake. That's five this week. :)
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
User avatar
1eye
Family Elder
 
Posts: 2876
Joined: Wed Mar 17, 2010 4:00 pm
Location: Kanata, Ontario, Canada

Postby frodo » Thu Apr 28, 2011 9:13 am

Leonard wrote:In fact, it is neither of the two


I would prefer to say that it is both at the same time. It is more accurate, isn't it?
User avatar
frodo
Family Elder
 
Posts: 610
Joined: Wed Dec 02, 2009 4:00 pm

Postby Asher » Fri Apr 29, 2011 3:12 am

There are two place where democracy does not work. The army and science. With all due respect, thank god (who ever that may be) that the 'wanna be, social media scientists' on this forum do not determine the MS scientific and research agenda.
User avatar
Asher
Family Elder
 
Posts: 337
Joined: Sun Jan 31, 2010 4:00 pm

Postby Leonard » Fri Apr 29, 2011 4:21 am

Asher wrote:There are two place where democracy does not work. The army and science. With all due respect, thank god (who ever that may be) that the 'wanna be, social media scientists' on this forum do not determine the MS scientific and research agenda.


it is not that black and white.
the army : the current situation in Syria might help change this believe...
science : http://www.isei.manchester.ac.uk/TheMan ... ifesto.pdf
social media scientists' on this forum do not determine the MS scientific and research agenda: strictly speaking you may be right and but broadly speaking you are wrong..
User avatar
Leonard
Family Elder
 
Posts: 617
Joined: Fri Dec 18, 2009 4:00 pm
Location: Brussels, Capital of Europe


Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users

cron