After Bologna- What can we do?

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

Postby cheerleader » Thu Sep 10, 2009 6:23 pm

daverestonvirginia wrote:
I have been a big believer in the Best Bet Diet and I believe it has worked for me and others. If you take a look at the BBD it is great for cardiovascular health. ccsvi also presents a method for the blood brain barrier source.
I would like to get Ashton Embry's thoughts on this


Dave-
Your wish will soon be granted. While in Bologna, I saw the pre-release of an article Ashton Embry did on CCSVI for the MS Pathways Magazine future issue. He's really excited about the research, for similar reasons to yours, Dave.

As far as the over-enthusiasm angle...whatever. I've never been the girl to cry wolf..all my research has been devoted to the vascular paradigm. Not like I've been cheerleading for tysabri. If this is not for you, that's OK-this thread was begun because I've been swamped with e-mails asking what people can do to bring the CCSVI research to their doctors, and how they can help their health if they cannot have an endovascular procedure any time soon. My enthusiasm is founded on my personal experience with my husband's healing, and the hundreds of patients helped by Dr. Zamboni. Nothing more, nothing less.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby daverestonvirginia » Thu Sep 10, 2009 6:43 pm

Wow, that's great, I think I have read most if not all of what Ashton Embry has written. I will be looking forward to reading his article.

cheer I love your enthusiasm, I hope you did not think I was anything but thinking positive about the ccsvi news.

As far as spreading the news I can't wait to have more people find out about this.

On a side note, I have a Sister who is a doctor (family practice) who also has MS. Also, have a brother in-law who is a neuro radiologist and I can't wait to get them exicited about ccsvi.
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Postby CureOrBust » Thu Sep 10, 2009 7:38 pm

Frank wrote:... now I would like to add another (more reluctant) point of view. I'm not really sure if my idea/analogy applies for CCSVI but it might be favorable not to be too aggressive in bringing out the idea in a possibly too optimistic way.

Cheerleader wrote:As far as the over-enthusiasm angle...whatever.
I think frank may of been misunderstood. I not only see his point, but have always tried to curb my enthusiasm when presenting this stuff to someone in the medical world. What i was a little hesitant about is appearing as one of those riding on the bandwagon of the latest "miracle cure".

I definitely see your point frank, but I think we are still at a point where "no-one" really knows about this and how far its come. One of the angles which will keep it all in check I think, is no-one is really going to get rich off this. Which I think is possibly involved with a lot of the other paths you mentioned.
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Postby cheerleader » Thu Sep 10, 2009 7:51 pm

daverestonvirginia wrote:
cheer I love your enthusiasm, I hope you did not think I was anything but thinking positive about the ccsvi news..


sorry Dave..that comment wasn't meant for you, I was just addressing the previous posters. No worries!

CCSVI is not about pitching a miracle cure for MS. It's about understanding how the venous system works, and how congenital venous malformations can contribute to disease. As every doctor at the symposium asked, "Why have we never looked at the jugulars before?" And Cure's right...there's really no profit incentive. The incentive is understanding the mechanism of disease in a compromised venous system...and that got all of the university doctors from a variety of specialties very excited. Dr. Frohman stated that he now wants to look at the venous implications in autoimmune disease. And he's a rather level-headed man.
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http://ccsviinms.blogspot.com
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Postby catfreak » Thu Sep 10, 2009 9:13 pm

Cheer,

As far as getting the word out goes. The facebook thing is working. I have added several of my posts to be about CCSVI and asked my friends to read it and become a fan of your CCSVI facebook page. Many of those fans are my friends and family - many...

What I am getting out of this is my family who is like talking to a wall, now have something to reference what I say to them. It is making more sense and sinking in somewhat. I can give them a printout or refer them to Tims CCSVI thread, which ends up being more than most of them can handle. Our CCSVI is brain overload for the everyday non MS person.

This is what I have on face book now:

Cindi Murrah: 9/10/09 I will be 1 week post op from my CCSVI Intervention at Stanford University School of Medicine in California and feeling better already. Woohoo!! Step by step, intervention by intervention, prayer by prayer MS will be stopped in it's tracks. If you want to learn more or help a friend with MS please become a fan of CCSVI in Mutliple Sclerosis and spread the word. This is an urgent call for everyone to join in


I would be glad to add a statement like this everyday if it gets other looking at it,

I have had 2 calls in the last 2 days wanting to know I did. Many people have asked my husband in his electronics shop about what I had done because the know somebody who knows somebody with MS. I would love to have a disscussion group here in my small town if 3000, but I am not smart enough to do that.

I got a call from my dentist assistant letting me know she (the Dentist) was closing shop due to her MS, She was on Copaxone and her brain lit up like a christmas tree according to her Neuro so she is on rebif and it is draining all the life out of her. I have got to get this info to her so she can take it to her Neuro at Vanderbilt in Nashville.

I saw where Dr D has only done 35 before the conferance. For some reason I thought it was more like 40+.

You need to get some rest and so do I so I can get back to work in the morning with hopefully no swelling.

You are still the Woman and of course my husbands angel. It would be so nice to meet you some time and thank you in person for all you have done.

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby mrhodes40 » Thu Sep 10, 2009 9:26 pm

point where "no-one" really knows about this and how far its come.


I agree; it is far more well developed than I imagined and there has been a vast amount of work going on in places other than Ferrara,just look at those presenting material at the Cenaculum..... not that much of the material was Dr Zamboni and his studies, it was material from ALL OVER. I was blown away with gratitude at how well developed the overall supporting/tengential/associated work really is and how many other experts had weighed in in a positive way.

it is incredible
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby Ernst » Thu Sep 10, 2009 9:57 pm

cheerleader wrote:While in Bologna, I saw the pre-release of an article Ashton Embry did on CCSVI for the MS Pathways Magazine future issue. He's really excited about the research, for similar reasons to yours, Dave.


Ashton Embry is the man I respect very very much. He is big scientist and with his best-best-diet we have had fantastic results. I would like to read his article about ccsvi. His collection of scientifif articles related to ms is worth reading. http://www.direct-ms.org/
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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Postby CureOrBust » Fri Sep 11, 2009 3:51 am

So, its in respected Journals, we here at TIMS get many hits with CCSVI & Multiple Sclerosis, there is the multilingual European web site for CSVI, its on FaceBook... But one place it appears to have skipped is YouTube. Anyone?
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Cureorbust I was just thinking

Postby DigitalMunkey » Fri Sep 11, 2009 4:09 am

The same thing.

But what to say and how to say it? What format, video or presentation? Its a really great idea as good news spreads like wildfire on youtube.

Peter
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Postby IHateMS » Fri Sep 11, 2009 5:13 am

another grassroots option, although archaic, is a trifold pamphlet (one-sheeter) that could be left by TIMS members at various doctors' offices as we go to appointments.
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Postby bestadmom » Fri Sep 11, 2009 6:35 am

Every so often I google CCSVI Zamboni and not too much would come up - TIMS, some papers, Wheelchair Kamakaze's blog - maybe 2 pages on google.

When I googled it last night there were pages and pages so the word is getting out- mostly since Tuesday. The news feed for Accellaerated Cure had the release from Tuesday.

The only BIG US site that didn;t have anything is NMSS, which annoyed me. I started searching their site for press contacts and sent emails to the national pr person and my local one in CT requesting they cover the story. We'll see if I get any replies.

We have to do this one person at a time until it reaches critical mass. My boss's next door neighbor is a doctor with MS, who goes to the same skeptical neurologist I do. My boss has the links to send to him.

I have clients with relatives with MS and I've sent the info to them. There's a very prominent retailer in Seattle whose sister has MS and he has many very publicized events to fundraise. He's next.

Since big pharma seems to control the US press when it comes to scientific and health articles, we are going to have to push until someone has no choice but to respond. Hopefully we can be heard sooner rather than later.
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Postby CureOrBust » Fri Sep 11, 2009 7:11 am

bestadmom wrote:Every so often I google CCSVI Zamboni and not too much would come up ... When I googled it last night there were pages and pages so the word is getting out- mostly since Tuesday. The news feed for Accellaerated Cure had the release from Tuesday.
Big problem here is you have to be looking for it to find it.

bestadmom wrote:We have to do this one person at a time until it reaches critical mass.
I've had thoughts of an A4 page stuck on a few telegraph poles, suggesting people look up "CCSVI Multiple Sclerosis" in Google. Placement / choice of which telegraph poles could make a world of difference.
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Postby bestadmom » Fri Sep 11, 2009 7:29 am

I just got an email from the CT chapter of the NMSS looking for the info so I referred him to fondazionehilarescere website, Dr. Dake, Dr. Weinstock-Guttman, and TIMS. I think he's got enough liks to get concrete info.

If he takes ownership of it, hopefully he will get the word out.

Cure, you are so right that you have to know what to google for to find it. Unless the media picks up on this and it's in everyone's face, it's like finding a needle in a haystack.
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Postby ErikaSlovakia » Mon Sep 14, 2009 8:37 am

It took me couple of days, but from now when you type CCSVI on Slovak google, you will find Slovak MS Forum and my posts about this at the first place.
My web page is at the second place with the translation into slovak language about CCSVI from Cheer.

I will mail printed information to Czeck Republik to Dr. Havrdova tomorrow. She is the head of MS center in Prague.
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 javaneen » Mon Sep 14, 2009 10:29 am

We should all make flyers and put them on people's car at everyone's local MS walk. I know I participate in the MS walk every year and there is always a flyer on my car when I leave with info about MS. We could make flyers with links to youtube video's and facebook sites...and of course TIMS. I really think that would get the word out to people with MS very quickly.
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