Lately social media has received so much press. The media is trying to give the general public the impression that social media has caused problems for those who live off MS.
Facebook is interfering with the old boys research network, and their MS drug pipeline. This is a wonderful thing.
Nearly every drug the Neuros have supported with glowing reviews, end up with long-term independent data showing that the drugs were virtually useless. In fact, many of the CRAB drugs make people more disabled than those who took nothing.
Facebook helped spread real research info, that supports CCSVI. Data that has been conveniently ignored by the MS Society and the CIHR. Real research that was blocked by their Kangaroo Court, that used their influence to guide Health Ministers.
Below is a small clip from the Vancouver Sun paper. They actually mentioned the very reason why so many have joined Facebook. To have a voice. To help tell the world about this gift from Dr. Zamboni.
The paper says:
“More than 500 Facebook groups, pages and events emerged in less than two years to promote the controversial MS treatment - which is not supported by MS doctors or the Multiple Sclerosis Society of Canada - says a report to be published Thursday in the journal Nature.”
This is exactly why we are here. The very agency that raises millions of dollars, keeps telling everyone that they are trying to EndMS. Yet they have consistently dragged their feet, and acted willfully ignorant countless times. While being supported by their Neuro buddies.
The very MS agency set-up to help, has not been there for you since we first saw the Liberation Treatment on W5 in November 2009.
The journal Nature is dead right. Something is very wrong when everyone in Canada can get a simple angioplasty on any vein in their body, except if you are wearing an MS arm band.
Everyone is entitled to have normal blood flow, except those living with this MS monster.
Facebook is right. There is something is very wrong here.
WaYnE
Vancouver Sun - Science needs to be in social media: report
'Liberation' row highlights need for greater engagement, science journal suggests
"Canadians' extraordinary support for an unproven "liberation" treatment for multiple sclerosis has led to a call for the country's research community to get with social media.
More than 500 Facebook groups, pages and events emerged in less than two years to promote the controversial MS treatment - which is not supported by MS doctors or the Multiple Sclerosis Society of Canada - says a report to be published Thursday in the journal Nature.
"What is fascinating here is the extraordinary mobilizing power of the media and the Internet," says the report by Roger Chafe, director of pediatric research at Memorial University in Newfoundland, and his colleagues at the University of Toronto and St. Michael's Hospital in Toronto.
"The case indicates the unprecedented pressures that politicians and funders worldwide can now face to alter research priorities even in the absence of credible scientific evidence. In this new social-media environment, researchers and clinicians need to engage more actively with the public to articulate the science validating, or debunking, novel treatments - and to ensure that patients' concerns and priorities are heard."
Science needs to be in social media: report - Vancouver Sun:
http://tinyurl.com/3j7kcjq
"A controversial (read: insane) alternative multiple sclerosis treatment has gained a popular following in Canada via social media, wrongly influencing research priorities. The truth needs its own social-media PR campaign, and doctors might just be ready to wage it."
Why You Should Consult Your Doctor, Not Facebook:
http://www.fastcompany.com/1750384/dr-facebook-is-wrong
People power: Social media can alter research priorities
http://www.humanhealthandscience.com/people-power-social-media-can-alter-research-priorities/news
From Wayne:http://www.facebook.com/notes/ccsvi-in-ms-toronto/ccsvi-not-supported-by-ms-doctors-and-the-ms-society-of-canada/10150223529639919