Why arent any of you using the media to get this out there?

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Why arent any of you using the media to get this out there?

Postby DigitalMunkey » Wed Oct 07, 2009 3:25 am

Here is a tip folks

I am about to begin informing European media personalities who suffer from MS about CCSVI.

You guys in the US could start by contacting people such as Montell Williams or Richard Pryor. Ge the word in the right ear and watch what transpires.


Williams even runs his own MS foundation with money available for research!!! Come on folks get writing, calling and informing.

Peter
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Postby Loobie » Wed Oct 07, 2009 5:16 am

You need to read some more on this thread. Our Cheerleader is having a Canadian film crew at her house right before they see Dr. Haacke. There is lots and lots going on in this arena. You shouldn't assume nothing is happening before you read what is happening.
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Postby zap » Wed Oct 07, 2009 5:16 am

We'll need a ouiji board to get in touch with Richard Pryor!
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Postby Ernst » Wed Oct 07, 2009 5:38 am

zap wrote:We'll need a ouiji board to get in touch with Richard Pryor!


This was good :lol: :lol: .. made me laugh, good one!
My wife's 3 yrs post video: http://www.youtube.com/watch?v=eLeqLps8XR8

Our family: http://www.youtube.com/watch?v=p_QCKxeQAlg
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Jees, my bad

Postby DigitalMunkey » Wed Oct 07, 2009 5:52 am

I was checking Richard Pryor website today and it had a very active forum. I just assumed he was still goin strong. I couldnt believe it when I read he was 65 when he passed on, it feels like five minutes ago since I enjoyed his work as a teenager.

Cheer is doing a grand job, I just thought the, contact media personalities approach would reap rewards.


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Postby CureOrBust » Wed Oct 07, 2009 5:57 am

months ago, I went round to all the local "current affairs" TV programs websites, and posted an email suggestion using their forms, for a story suggestion (on CCSVI & MS). Nothing came of it.

I also did the same on Montels site. Sure, not a great effort, but something.
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Hi Cure

Postby DigitalMunkey » Wed Oct 07, 2009 6:01 am

I have been trying to find a direct root to Montell, but no luck yet. Everything leads to his research page or the show pages. Its clear that anything sent there is getting filtered by others before getting to him.

Ill keep searching fora phone number or direct email link.


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Postby LR1234 » Wed Oct 07, 2009 6:04 am

Try and find his publicist and/or manager
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Postby cheerleader » Wed Oct 07, 2009 7:31 am

I had tried to get an American journalist to come with me to Bologna, but no luck. I ended up having to "report" back myself....but those notes made a small ripple. Yes, this is frustrating, but don't assume since you're not reading about it, that there's nothing going on. Sharon got CCSVI info to Ashton Embry, and he has been very helpful. There have been others working behind the scenes, bestadmom- sending press releases...lots of busy folks. sooooo....stay tuned.
God bless Richard Pryor...and if his daughter reads this, get in touch-
cheer

Digital monkey- Just read your post in the Finnish thread. Now I understand your frustration...believe me, as a caretaker, I had to get this moving for my husband. Everyone is right, there is much you can do for her right now with diet, supplements and lifestyle. Reduce stress, keep her moving, get your wife supplements like vitamin D, quercetin, bromelain, nattokinase- to move her blood...give her nutritious low fat food and a diet like Swank or Best Bet. Find ways to laugh and love and search for joy together. Pray for all of us here. We're in this together. I'll think of your wife today....
Last edited by cheerleader on Fri Oct 09, 2009 4:35 pm, edited 1 time in total.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby MaggieMae » Wed Oct 07, 2009 7:52 am

All I can say is "Wow". I'm impressed with everything you all have been able to do. Thank you for all of us with MS or those who love someone with MS.
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Postby SammyJo » Wed Oct 07, 2009 10:42 am

Don't worry, when you are talking "MS Cure" this is going to get picked up. And you've got great doctors like Haake taking a bold step http://www.ms-mri.com to get this to patients sooner. cheer that is great about the Canadia documentary!

Take heart, CCSVI is already moving like a bullet train, compared to the many years effort to get media recognition for LDN, which seems to help any immune system related disease, not just MS. Currently we released a paid press release http://www.prweb.com/releases/2009/10/prweb2968694.htm and have a cross-continent effort going into International LDN Awareness Week and the 5th LDN conference 10/19-25. Will let you know how it turns out, how many press stories etc.

I don't think this is going to require a years long dogged effort. An important effort now is sending Dr Haakes MS protocol out to all interventional radiologists, to prepare them to give treatment as demand erupts.
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Postby CureIous » Wed Oct 07, 2009 10:52 am

SammyJo wrote:Don't worry, when you are talking "MS Cure" this is going to get picked up. And you've got great doctors like Haake taking a bold step http://www.ms-mri.com to get this to patients sooner. cheer that is great about the Canadia documentary!

Take heart, CCSVI is already moving like a bullet train, compared to the many years effort to get media recognition for LDN, which seems to help any immune system related disease, not just MS. Currently we released a paid press release http://www.prweb.com/releases/2009/10/prweb2968694.htm and have a cross-continent effort going into International LDN Awareness Week and the 5th LDN conference 10/19-25. Will let you know how it turns out, how many press stories etc.

I don't think this is going to require a years long dogged effort. An important effort now is sending Dr Haakes MS protocol out to all interventional radiologists, to prepare them to give treatment as demand erupts.


Yes, it is lightning fast, and because there's an actual procedure, which makes before/after contrasts or lack thereof so pronounced, that alone is enough to wake people up. After all, you can't take a picture of what LDN is doing or has done!
I'm not aware of any other surgical type interventions for MS. Even the thought at first sounds preposterous. Since drugs, and other non-conventional therapies take years to matrix, assess, and report on, it's understandable the mindset that wants to take this and plug it into the old way of doing things, "let's test it on a million rats first and see what happens". Sure, there should be copious studies and no "rush to judgement", but considering that no promises are implied or understood r.e. stenting, there sure are a lot of folks lining up to get the procedure done. Maybe we're all having a mass hallucination and this is all bunk lol. ;)
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Re: Why arent any of you using the media to get this out the

Postby NHE » Wed Oct 07, 2009 10:28 pm

DigitalMunkey wrote:You guys in the US could start by contacting people such as Montell Williams or Richard Pryor. Ge the word in the right ear and watch what transpires.


Williams even runs his own MS foundation with money available for research!!! Come on folks get writing, calling and informing.


Lately, I've noticed Montel on some late night TV infomercial trying to sell over powered blenders. I don't know if he's doing it because of his "celebrity status" or for some other reason, e.g., he needs the $$$. Oh well. It was entertaining nonetheless.

NHE
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