NPR/ Wheelchairkamikaze story finally aired

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NPR/ Wheelchairkamikaze story finally aired

Postby whyRwehere » Mon Jan 31, 2011 4:02 am

Here's a Link
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Postby pairOdime » Mon Jan 31, 2011 5:46 am

Seemed pretty negative. They didn't feel the need to balance it with any treatment success stories or include a comment from a CCSVI IR. I expected more from NPR.
It's a paradigm shift
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Postby whyRwehere » Mon Jan 31, 2011 6:25 am

yes, I agree...fairly negative. Well, not "fairly" negative. Some people can't be helped, but other people can, and you are right, there was no mention of them.
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Postby frodo » Mon Jan 31, 2011 9:27 am

lack of balance and contradictions:

"But it didn't work. Although the doctor who treated him in New York found a significant blockage, he was unable to correct it, Stecker says"

So it didn't work because the stenosis was not corrected. What kind of report is this?
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Postby pairOdime » Mon Jan 31, 2011 9:39 am

frodo,

It would have been nice to see Dr. Sclafani's comments included in this story concerning the failed treatment attempt. Is the intent of this piece to misinform, to stall, cast doubt, to prevent treatment progress?
It's a paradigm shift
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Postby bluesky63 » Mon Jan 31, 2011 9:55 am

Wow. What a different story it would have been with different facts included. I vividly remember how frustrated Dr. Sclafani sounded that he wished he had the right tool for Marc -- and that it was shortly after this that his work was put on hold for the IRB review, during which time a woman in her forties on his waiting list died despite her best attempts to find someone to treat her. And Zivadinov says the treatment is "unsafe" and "costly." Compared to . . . ?

I am very glad there's a link to Marc's blog. At least you might hope for a few more details there. Plus some food for thought and a laugh or two.

By the way, how do we get rid of this "confined to a wheelchair" crap -- I am so sick of that outdated language. I am "confined to a wheelchair" the way that my son is "confined to a bicycle." How much more "confined" would I be without my chair, which is an awesome piece of technology that lets me go faster than anyone else around and has given me back my freedom? People should embrace speed, technology, and getting into the world. Everyone loves my power wheels. :-) (quickie x-tender)
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Postby cheerleader » Mon Jan 31, 2011 10:19 am

this was coordinated by the NMMS/NPR to coincide with their CCSVI news coming out later today. Stay tuned.....
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby marcstck » Mon Jan 31, 2011 10:28 am

I must say that I was surprised at the tone of the piece. I was interviewed by the reporter for over 90 min., and while I didn't expect 90 min. on NPR, the comments that were used were kind of taken out of context a little bit.

When I said I wished I had waited until there was more research, I meant that I wished I had waited until some of the techniques being used to clear blockages had matured enough so that mine could've been cleared. Not sure that we are there even yet, at least in my case, but mine is an unusual situation, something I stressed to Gretchen but didn't make it into the piece.

Why the piece doesn't include comments by patients who have benefited is hard to understand. Of course, there are time limitations, but balancing my disappointing experience with the one whose was more satisfying would have painted a more multifaceted picture.

I thought the comments by the doctors were good. Certainly, they give the hypothesis credence, and dispel any notions of it being junk science.

Can't wait to hear what the news that cheer is talking about turns out to be… Actually, if this was timed to coincide with the NMSS news release scheduled for later today, I have a feeling there's not going to be a whole lot of data regarding trial results in that release…
Last edited by marcstck on Mon Jan 31, 2011 11:01 am, edited 6 times in total.
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Postby whyRwehere » Mon Jan 31, 2011 10:35 am

yah, I wasn't planning on holding my breath.
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Postby cheerleader » Mon Jan 31, 2011 2:15 pm

....and, as promised, the NMMS press release on their CCSVI studies. Coincidence?

http://www.nationalmssociety.org/news/n ... x?nid=4520

cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby MrSuccess » Mon Jan 31, 2011 2:44 pm

let's see ...... the NMSS reports that they plan to report every 6 months instead of once a year . As wonderful as it sounds ...... today's information is a repeat .

Am I missing something here ?

Where is the BIG news ?


..... a puzzled ....

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Postby scorpion » Mon Jan 31, 2011 6:45 pm

MrSuccess wrote:let's see ...... the NMSS reports that they plan to report every 6 months instead of once a year . As wonderful as it sounds ...... today's information is a repeat .

Am I missing something here ?

Where is the BIG news ?


..... a puzzled ....

Mr. Success


I second that. is there something I am missing?

Meanwhile in Buffalo, Zivadinov says his research on CCSVI already shows a clear picture emerging.

"CCSVI is not the cause of MS but might be a consequence or a contributing factor to progression, and I think that has to be studied," Zivadinov says.

Studying how the vascular system is involved in neurologic disease is an entirely new concept, Zivadinov says. One that may have an impact beyond any single disease.

"What professor Zamboni discovered in terms of veins is something much bigger than multiple sclerosis," Zivadinov says. "We need to understand the role of the venous system in the pathology of central nervous diseases and aging."

Zamboni himself says that even if it turns out he's wrong, coming to a greater understanding of the disease would be the big reward — both for him and thousands of MS patients.


Looks like the the lead researchers are not as sure of CCSVI's role in MS as the "social networkers". Good for them for trying to put things in perspective!
Last edited by scorpion on Mon Jan 31, 2011 6:55 pm, edited 1 time in total.
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Postby prairie » Mon Jan 31, 2011 6:55 pm

I was disappointed that the reporter somehow took something Dr. Zivadinov said and got it twisted around to "not only is the procedure unsafe and costly to many patients, it is impeding necessary research." The NPR report could have been much better done.

I believe Dr. Zivadinov was talking about the usefulness of CCSVI treatments, not safety - Buffalo knows the safety of the procedure. BNAC is partnered with University at Buffalo neurosurgeons and developed the first IRB approved CCSVI Treatment Placebo-Controlled Clinical Trial. In June 2010, ten people with MS who met two or more criteria underwent angioplasty treatments as part of Phase 1 of their Treatment Study. This phase tested the safety of the balloon angioplasty treatment procedure. The team is now enrolling 20 more participants in Phase 2 of the study. This phase is blinded to test the placebo effect and, like the initial ten subjects, these subjects will be evaluated periodically over six months.

BNAC is totally involved in their ongoing research into CCSVI, now for two years, to answer the questions:

    Are constricted veins the cause, consequence, or important contributing factors of multiple sclerosis?

    Are people with CCSVI more susceptible to developing MS?

    Is there is a relationship between blocked veins and MS progression?

    If CCSVI is present, is treatment needed?


They are committed to quality research and publication of the results which will document the safety and efficacy. Some of what I included above was borrowed from a letter from Dr. Zivadinov - no where did he say the procedure was unsafe. Does anyone believe Buffalo would be going ahead with phase two of the investigation if there had been adverse results from the safety phase?
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Postby MrSuccess » Mon Jan 31, 2011 11:55 pm

unfortunately ...... the CCSVI story ..... seems to be getting somewhat out of hand. Too many people taking on the role of CCSVI spokesperson ..... with the expected results. :twisted:

speaking /// dealing with the Media ..... is an art-form .

Ask any Politician . Any unguarded comments or ambiguous ideas .... will always be reported to your dissatisfaction .

Once again ..... TIMS members & posters ..... please leave the informational sessions ....... to the experts .

I nominate Dr. Hubbard as spokesman.







..... when I walk in a room ..... no one knows who I am .....



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Congratulations Marc

Postby MarkW » Wed Feb 02, 2011 11:35 am

It is hard to go public on this subject, so congratulations Marc.
I guess you have learnt that journalists often manipulate what we tell them so putting an interview in your own written words is very necessary.
A CCSVI factsheet and recent papers is also required, otherwise expect lots of errors.
People may say the radio programme was not ideal but you got CCSVI on US national radio. Well done Marc.

MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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