The Internet is being seen as a growing resource for health-related information for a large number of MSers. It is undeniable that its widespread presence has led to the growth of awareness that chronic cerebrospinal venous insufficiency (CCSVI) as an entity that may contribute to the symptoms experienced by MSers. Social networking and file-sharing Web sites have brought MSers together from all over the world and have facilitated the distribution of personal experiences and information derived from medical research as it relates to CCSVI. As a result, there has been an accelerated growth in the number of MSers seeking treatment for this syndrome in light of the possibility that it may improve their present condition. This article reviews this phenomenon, the Internet-based resources available to MSers seeking information about CCSVI, and the responsibilities of physicians as they participate in these online discussions.
This study discusses how social media has influenced the spread of the desire to have CCSVI. It is therefore a marketeers dream as you don't need evidence to spread the word.
Can the Social Media have any impact on outcomes surely not....
but guess who won the Best British Album of the past Sixty Years during the Reign of Queen Elizabeth II... the Beatles?... No!
Iron Maiden’s landmark Heavy Metal album of the Eighties The Number of the Beast have been voted best British album of the past sixty years in a major survey of British public. The Number of the Beast tops the album poll with a 9.2% share of the total albums vote.
This is a potent reminder of the what a loyal and passionate group of people can achieve be warned!
Prof G lost a debate on the desire to get Neuros to engage in Social media
I feel more comfortable saying this on this blog because you guys are really trying, so it's not so much a criticism of you.
ReplyDeleteDuring this social media burst for CCSVI, what were the neurologists and researchers saying on their blogs, Facebook, or youtube? Nothing... because they didn't have blogs, and they still don't.
Blaming "social media" is like blaming the fact that there was a big MS convention where things were discussed that none of the neurologists chose to attend and then the neurologists whining about how "conventions" spread misinformation.
It's time for all neurologists and researchers to get out there and face the patients and fight misinformation. There's a discussion going on and some of the most important participants have for some reason decided not to participate.
I'm very understanding that this is a new thing and that it's not what doctors and researchers "signed up for". I get that policies and procedures will have to be set up to mitigate risk so that neurologists can participate without doing harm to patients or organizations. I get that it's painful and frustrating to have to answer "we don't really know" to good questions. But times have changed. If neurologists don't talk to us, the con artists will.
Tell your colleagues to get with the times and that if they need a template to look at this blog.
CCSVI is crap . Granted.
ReplyDeleteBut the Maidens!!!!!!
I always imagined the Mouse a hardcore doc. It must be his bike-rider hairy look.
Iron Maiden fans in the States are trying to get them inducted into the Rock n' Roll Hall of Fame. Where will the madness stop?!
ReplyDeleteSeriously, social media has proven the accuracy Robert A. Heinlein's infamous quote.
I do hope that Dr. Siskin and the other authors declared their conflict of interests in this paper (that they are involved in a clinical trial to determine the effectiveness of angioplasty in treating CCSVI and MS and that Siskin is the trial's principal investigator).
Can i play with madness:-)
ReplyDeleteRe: "It's time for all neurologists and researchers to get out there and face the patients and fight misinformation."
ReplyDeleteI couldn't agree more!
Hi All,
ReplyDeleteDoesn't seem so long ago that the debate raged as to whether indeed a reduction in blood flow in MS patients was any different to normals.
Well with the latest round up it would appear we are now moving onto the argument of whether restoring blood flow will ease any symptoms of pwms and less into whether the condition exists.
I look forward to the continuation of the research and appreciate this is all at the very start and it will take a few more years yet of hard work to appreciate the full potential of optimum vascular conditions, by the vascular experts.
Regards Andy
Balloon Angioplasty Improves Venous Flow in MS Patients
ReplyDeleteTry this link.
Regards Andy
"Looks like you have missed a study out".
ReplyDeleteThere are probably loads of thing I miss as I prefer to talk about things in the scientific press rather than the media. The latter invariably get a half-cocked story or inflate the significance out of proportion.
I know this because every media story involving me has been wrong.
I do not use press stories to encourage people to do things, but may do so if there is a warning- better to be safe than sorry
However
I had a look at the link and it is
Dr. Manish Mehta. You may remember this is the person who has withdrawn his MS trial, because of irregulaties in procedure highlighted by the FDA
Dear Andy Link was missing. I think it is this
ReplyDeletehttp://www.clinicalneurologynews.com/index.php?id=9985&type=98&tx_ttnews%5Btt_news%5D=134549&cHash=da03e20e36#.T9csLnIrdsI.facebook
"Doesn't seem so long ago that the debate raged as to whether indeed a reduction in blood flow in MS patients was any different to normals".
Don't kid yourself this debate is still ongoing
"Well with the latest round up it would appear we are now moving onto the argument of whether restoring blood flow will ease any symptoms of pwms and less into whether the condition exists".
It is becoming Marmite..you like or loathe it:-).
Hopefully we will see some clarity soon. Have you got your predictions stored in the time capsule so you can say "I told you so" or "eat humble pie"
Harry McDaniel wrote
ReplyDeleteMost of the people are still new in using different social networking platforms and they should start learning more its advantage especially in developing business. on Social networking and the spread of ideas