This Is MS Multiple Sclerosis Knowledge & Support Community
Welcome to This is MS, the leading forum for Multiple Sclerosis research and support. Join our friendly community of patients, caregivers, and researchers celebrating over 20 years of delivering hope through knowledge.
Here is a public clarification from Dr. Zivadinov--
He was misrepresented in the NPR piece, and BNAC goes on the record:
Here is a link to the interview by Gretchen Cuda that aired 1/31/11 on "Morning Edition."
PLEASE NOTE THAT YOU WILL HEAR DR. ZIVADINOV SPEAKING ABOUT HOW IMPORTANT HE FEELS THE RESEARCH IS TO UNDERSTAND THE USEFULNESS OF CCSVI TREATMENT AND ABOUT HIS CONCERN FOR PEOPLE HAVING TO GO FAR FROM HOMES FOR TREATMENT FOR WHICH THEY ARE PAYING.
He does NOT say, as you will hear the reporter state before he speaks, that angioplasty treatment is unsafe or that research is impeded by patients going far from home for treatment.
In germany, there's an institution called "Presserat" (press council). Anyone can make a complaint there and if they come to the decision that the complaint is valid, they can force this media to publish a counterstatement (among some other measures they have). I did this for the crappy press release about CCSVI of the "Neurowoche" and had some success as they came to the decision that the complaint was valid, but the measure was only an advice.
I found out that there's no such institution in the USA, but maybe there are other ways?
"There is only one good, knowledge, and one evil, ignorance." Socrates
The media want to talk to people who are actually involved in the process of de-stenosis. Real patients who are prepared to talk frankly about their experiences, not second hand stories. Same applies to the surgeons/IRs, should be docs who actually insert catheters and balloons into patients. Researchers need to write comments/papers but media expects people to have first hand experience. Dr Hubbard is leading a great research project but is not de-stenosing people.
Also drop provocative terms like liberation and cure, they have different meanings in normal English. Promise less and deliver more - this will win the debate in the media.
Hope my follow up is on its way in UK press...........
MarkW
Mark Walker - Oxfordshire, England. Retired Industrial Pharmacist. 24 years of study about MS.
CCSVI Comments:
http://www.telegraph.co.uk/news/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
markw - from your posts I have derived your support for the association between CCSVI and MS. You have been treated . And now wish to tell all of your experiences and results . As a health professional ...... your opinions carry great weight .
We are now at a critical point in CCSVI -MS discovery . And must proceed
with great caution ....... as not to lose the ground gained.
My point is this :
A pwMS giving detailed accounts of CCSVI treatment to the media is on the surface ...... thought to be a good idea ..... it also makes for a good story in the media . This benefit's them [ the media ] more than you . As they are in the business of making money ...... from the sale of their product.
The gentle reader / watcher of the story will eventually ask themselves the question : That's interesting ...... but ..... is this person qualified to make such projections ? So is it true ?
On the other hand ...... and my preference .... is :
Having the gentle reader/ watcher be presented information by a health professional ........ giving opinions based on information gathered from first hand experiences or experiences from colleague's .
Mr. S, thanks for the unsolicited advice, but I'll politely decline to accept it.
While it's unfortunate that my comments were taken out of context, I have no regrets about doing the interview. Wheelchair Kamikaze was one of the first places on the Internet (other than this forum) to disseminate information on CCSVI, and whether the blog meets with your approval or not, it continues to be a widely used source for such information. It's garnered praise from both patients and physicians for the evenhanded and decidedly not hyperbolic fashion in which I try to present information, not only on CCSVI, but on all things MS.
Since the NPR piece aired, the CCSVI related pages on WK have received thousands of hits, and have hopefully enlightened many patients who previously had little or no knowledge of Dr. Zamboni's hypothesis. I've also received dozens of e-mails from inquisitive patients, each of which I've answered personally, as I do with all e-mails sent to me via the blog.
I'm quite proud of the blog, and of whatever role I've played in helping get the word out about CCSVI.
As for my relative inexperience in dealing with the media, while I don't claim to be interview savvy, I'm far from naïve in such matters, having worked with the media during my 20 year career as a video/TV/DVD producer. You'll notice that Dr. Zivadinov, who has plenty of experience being interviewed, was also mischaracterized in the piece, so it would appear I'm in good company in that regard.
Unfortunately, once interviewed, the interviewee has no control over how their words will be used. I'm sure that your anointed CCSVI voices, Dr. Hubbard and "ringleader" (as you choose to call her), could just have easily uttered words whose meaning could be obscured in the hands of a reporter.
While it's regrettable that the context of my words was lost, the reaction I've received to the NPR piece, which has been overwhelmingly positive, bears out the old adage that "there is no such thing as bad publicity". There are now many more patients aware of CCSVI then there were before the piece aired, adding all the more voices to "the movement". And that's a good thing…
marc - your opinions are always ..... a good read .
to remind you ....... '' Ringleader '' was burned by a media reporter also.
you can read her report on that experience ... in one of her posts ......
and that kid really knows her stuff .......
Dr. Zivadov .... has been misquoted.
YOU ..... state you also have been quoted incorrectly .
Again ..... playing CCSVI spokesman .... has significant risk's .....
One must FEED the media Short concise press releases ...
and short concise sound bytes ......
might I suggest .... you preface all comments with ............
[a ] ....... according to research by Dr. xxxxxxxx .......
...... Dr. zzzzzzzz has reported ................
....... I agree with Dr. ggggggg ...... when she said ...........
A good Trial lawyer NEVER uses the words ... " I think " .... in Court .
Who cares what '' you think '' ......... it is cold hard FACTS that carry the day. Far better ..... to present established expert opinions that you agree with .
Generally good advice, Mr.. S., but this reporter was interested in my personal experiences, which don't lend themselves to attribution to any of our esteemed physician friends. If she were interested in the work of Dr. X, Dr. G, or Dr. Z, she certainly could contact them directly. And, in fact, she did.
I did assume that she would be talking to a patient who had experienced benefit from CCSVI treatment, and I even suggested a few she might contact. I also tried to get her in touch with Dr. Sclafani and the folks behind the CCSVI Alliance.
Most reporters are pretty good at their jobs, and accepting stock "sound bites" isn't what earns them their bones. I would think a man of your obvious sophistication would instinctively understand this.
In the case of this NPR piece, I've communicated with the reporter several times since the report was aired, and she lays some of the blame on the liberal editing done by her superiors.
Certainly, this was a learning experience, but hearing the same soundbites from the same few talking heads ad nauseam is not what's going to drive the CCSVI story forward. This has been a grassroots movement, and as such, any reporter trying to capture the essence of the CCSVI story will undoubtedly, and correctly, try to go directly to the source.
Let's not forget, freedom of the press and freedom of speech are perhaps the two most important foundations of our democracy. As any flag swaddled tea party member will tell you, deliberately manipulating the intentions of the founding fathers is a no-no.
In putting the piece together, the reporter didn't interview any of the folks vehemently opposed to CCSVI, either. That's kind of surprising as well, but should be part of any journalistic effort trying to fully explore the complexities involved in the CCSVI saga…
Suffice it to say, the NPR piece was far from perfect, but it did introduce a whole new audience to the concept of CCSVI. Again, that's a good thing.
As Marc pointed out, even writers are often surprised when they see their own pieces. Sometimes every single person involved is surprised at the end product. I love it when I'm surprised in a good way, but you should hear the conversations after the fact.
Bottom line, more stories allow many scenarios for multiple sources of information, and if a link to Marc's site allows people to see more than one mind set, this could end up being a major success.
