This Is MS Multiple Sclerosis Community: Knowledge & Support

Delurking bc I can't stand the fact that most world media/medicos aren't picking up the potential of CCSVI. And, when they are covering it they're getting some of it wrong.

IMHO, I believe if we create an international "marketing" campaign for CCSVI we'll have more success than if we try to make noise individually.

I'm not talking logos, taglines, etc. I'm talking a carefully crafted social media campaign (think media, bloggers, facebook, forums, Twitter, doctors, etc) to move CCSVI off the boards and into the medical community in a systematic manner. If we create a concise "Introduction to CCSVI and Diagnosis", post it as a sticky, send it to anyone we can think of, and use it in our "comments" to articles like the one in the Huffington Post, we can create a cohesive, accurate statement.

Will someone (Cheer?) draft a brief synopsis of CCSVI theory and diagnostic tests. I'll edit it so it is suitable for various elements of a social media campaign and repost so everyone can use it.

VailKin

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Dxd 1994 RRMS, 2008 SPMS
Climb on!

VailKin,

Thanks for the idea. It sounds like a really good one to me. I've pieced together, at various times on my own, some snippets of this and that that I've found on different threads as well as from the sticky’s, and I use those when talking to my Chiro, family & friends, etc.
I'm out of my state, traveling in our motorhome, so haven't approached my neuro or GP, but I know one of my fellow Montana MS patients is, or has already advised her GP (We have this GP in common. ) of CCSVI and Dr. Dake’s upcoming trial.
But I’d sure like one well written and concise "Introduction to CCSVI and Diagnosis" to have at my disposal. Maybe even also a shortened version I can put on a flashcard and carry in my pocket or purse.
You know how some of us have trouble remembering the name of a person we've just been introduced to. You know what I mean, you’re standing there looking them straight in the eyes, having a conversation, and even though just seconds ago you were introduced, for the life of you, you can’t pull that name back out of the deep black abyss it fell into!
Well, that’s how I feel when talking about CCSVI at times. A person will say, what is CCSVI again, and I mumble something about stenosed veins, iron accumulation and angioplasty and for the life of me, I can’t even correctly tell them what the initials CCSVI stand for……….I can‘t pull it out of the abyss anymore than I could that forgotten name, and then I’m standing or sitting there feeling totally defeated, ineffective and more confused than the person who is trying to follow my illogical description. But if I had my “cliff notes” handy, it would sure help.
I have written to media about CCSVI and that is much easier for me, cause I’m not face to face and can look all over for what I need when writing on the computer. But I hate referring to other articles and attaching lengthy links as I’m afraid that they may or may not really be reading my letter, and will probably not even be opening the links.
So a cohesive, accurate statement, written as a concise "Introduction to CCSVI and Diagnosis", would be awesome! And I like the idea also that it be suitable for various elements of a social media campaign so that everyone can use it.

VailKin,

We aren't very coherent as a community. But I think that is one of the good things about CCSVI here on TIMS. Each one of us is absorbing the information and taking whatever action is available to us at the present time. As I've been told by the scientists : give me papers, not newspaper stories. So I just constantly bombard my contacts with information. I am a member of the artillery not a sniper, LOL. Every day I filter the information that is posted here and email my contacts whatever I see that is appropriate. All the doctors and scientists get links to the papers and interesting scientific observations. My non-science contacts get press releases and links to the documentary and human interest stories. I informed my Congressional Representative with a short email and a link to the documentary.

All the information is here. Those of us who come here are the conduits.

VailKin,

Have you been to CCSVI in Multiple Sclerosis on Facebook? Cheer and MRhodes administer it and it is clear, concise and presents the more targeted papers on CCSVI.

Also check out http://csvi-ms.net/en. It is global, and as in-depth as you can get on every aspect of CCSVI. There are versions in Dutch, English, Spanish and French with a drop down menu from Google Translate.

Hi all,

While an organized social media campaign would be benifical, it appears CCSVI info moves quite naturally on it's own. The MS community is very tech/info savy, soon as a link is posted on facebook, bulletin boards etc. it makes the rounds quickly.

Infact, the MS communties tech/info savy caught the old model NMSS by surprise, they were'nt prepared to deal with the onslaught.

I'm a Tweeter and if you search #CCSVI on Twitter.com you'll see all the important links.