US Media Coverage...Begins Now :-)

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US Media Coverage...Begins Now :-)

Postby SammyJo » Wed Feb 10, 2010 11:32 pm

It's been killing me not to tell y'all, but we did an interview with ABC. Thank you to Sherri Shelton White for contacting ABC 7 KGO-TV news. This will make it easier for everyone who is contacting the media. I think we'll be seeing more stories shortly.

http://abclocal.go.com/kgo/story?sectio ... id=7270566
RRMS '95 SPMS '02 | CCSVI 10/09 | Adult stem cells 2012 | http://www.patientsforstemcells.org/
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Postby eric593 » Thu Feb 11, 2010 12:06 am

Good interview!

That is such a disappointing review from Dr. Zamboni in the broadcast on his experience with those with severe disability that he's treated that they've only experienced "less fatigue and were less tired and more positive".

Does that mean those of us with accumulated disability won't have any hope from this research? That kind of result doesn't sound like much more than placebo effect. How upsetting to learn that. :-(
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Postby SammyJo » Thu Feb 11, 2010 12:15 am

Don't worry, I'm looking forward to making an impressive comeback! That is why it is so important that those of us who were early pioneers, and lucky enough to get the treatment, post our results in the CCSVI Tracking Log here at TIMS. We have to write our own case reports, honestly, the good, the bad. This will help other patients decide on trial participation, and help doctors develop good diagnostic protocols, treatment procedures, and follow up therapies for CNS repair. If it weren't for the resources posted here at TIMS by those who went before me, I would not have had the confidence to try this.
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Postby eric593 » Thu Feb 11, 2010 12:27 am

You know, in thinking about this a little more, it's really too early for much else to be reported. Long term damage may be permanent (or won't be healed easily or quickly), and it's still too early for the majority of patients who have had the procedure to talk about whether it's stopped MS progression. I'm sure a placebo effect IS still working on most any way and it will take a lot longer for us to flesh out the true effects of the procedures.

And maybe Dr. Zamboni was asked a question about what has been reported in terms of symptom improvement - it wouldn't surprise anyone if symptoms caused by long term damage weren't improved in short order.

Overall, I thought the piece was positive and will help with the CCSVI research and treatment efforts. Glad you were involved with the broadcast and spreading the message! :)
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Postby Ernst » Thu Feb 11, 2010 12:41 am

Thanks Sammy Jo, good work - good article. Its so important that this is in media, all over the world. And I guess now things are happening broader and faster.
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Postby marcstck » Thu Feb 11, 2010 12:53 am

Hey, Sammy Jo, way to go! I do believe that's the first American media coverage of CCSVI, great job.

One thing, though, how did you get Megan Fox to play you in the video?
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Postby ErikaSlovakia » Thu Feb 11, 2010 1:32 am

Thank you, Sammy Jo! :)
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Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby jimmylegs » Thu Feb 11, 2010 6:08 am

good stuff sj!

to all, let's please start keeping all media-related posts on one thread
http://www.thisisms.com/ftopict-10212.html

you can still post a new subject line for each post under the media topic - people mostly don't, but you can.
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Postby shye » Thu Feb 11, 2010 6:19 am

Bravo, SammyJo
thanks for pioneering in every way--great reporting you do...
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Postby jr5646 » Thu Feb 11, 2010 6:38 am

Thanks SammyJo... great interview. You did a wonderful job and I was thinking maybe Meg Ryan as your stand in??? :-)

Thank goodness we FINALLY have some USA news coverage.. a milestone and hopefully a turning point? wow... even with the negatives (albeit not 100% accurate reporting), I still believe it IS moving forward in a positive way. The MS Society neuro. sure was a downer though, but to be expected.

I sure hope Dr. Dake comes out on top after all of this too... The Stanford neuro. dept. needs boycotted..

What still is amazing to me is that some folks want immediate results from ccsvi treatment after countless years of immune attacks to the cns? It "may" take years to recover... perhaps perm. damage occured? Stopping progression has to be the first priority, and only time will prove that. I'd gladly take it.

We all take meds. (some of us, anyway) with very little effectiveness and everybody "seems" to accept this without question (30% for the CRABS). Tysabri has better numbers, but can be deadly and you never see this in the news?

Bottom line is that we should have access to any damn treatment available... informed consent and all... let me decide, and not by people who have a vested interest under the guise of "protecting" me... period.

All the data, stats, and speculation flying around... I'd love nothing more than to switch places with a "normal control" for a day or two.. if we could all do this, we get any treatment we wanted..
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Postby jimmylegs » Thu Feb 11, 2010 6:43 am

hi guys if you want to copy yourselves over to the thread i mentioned for media ... that way your posts will still be searchable as yours after they are moved, rather than just being quoted by me. you can still include a subject line on your post to highlight within the topic, eg US Media Coverage...Begins Now :-)

again, great work sj!
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Postby euphoniaa » Thu Feb 11, 2010 6:48 am

jimmylegs wrote:good stuff sj!

to all, let's please start keeping all media-related posts on one thread
http://www.thisisms.com/ftopict-10212.html



There's no way in hell I can follow that much miscellaneous info on a single, long thread. I'm particularly interested in US media, but work full time. I can't slog through these newly formed, gigantic, conglomerate threads to find the posts I meant to reply to when I had time.

P.S. Great job, SJ & Marc. Hope I can find your updates later. :D
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Postby zap » Thu Feb 11, 2010 7:04 am

jr5646 wrote:We all take meds. (some of us, anyway) with very little effectiveness and everybody "seems" to accept this without question (30% for the CRABS).


And shoot, even that "30%" is way weaker than it sounds ... in 30% of patients they make the period between relapses slightly longer ... but don't show any significant improvements in quality of life or overall progression. Some weak claims to reducing lesions don't do much for me either, given the lack of correlation between lesion load and disease severity ...

In my opinion the drugs for MS available now are not worth taking. The side effects are significant while the results are not, yet they are pushed down our throats at earliest diagnosis with blatant fear tactics. I am so hopeful that CCSVI research can change the bleak treatment picture ...
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Postby ozarkcanoer » Thu Feb 11, 2010 7:14 am

That's a great video, SammyJo !! You look so happy. Your smile reminds me of ErikaSlovakia's when she was lying on the table having the treatment in Poland. Thank you very much.

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Postby kc » Thu Feb 11, 2010 7:50 am

YES! You go Sammy JO! I just saw this video via facebook.


Must have been tough to hold onto that bit of info without wanting to scream it from the rooftops.


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