North America CCSVI Scociety

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

Postby Vonna » Mon Jan 11, 2010 7:05 pm

Mechanicallyinclined,
Hey, I know it's not being promoted as a miracle cure. We're all a little touchy about that right now I think. :)
I just meant that the article didn't need to be pure positive, "advertisementish". :)
Just facts.

Thanks Johnson

Sharon, good thinking about the article. That would probably be the best approach. Thanks
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Postby jay123 » Mon Jan 11, 2010 7:22 pm

Sharon - I think that link should be http://www.msassociation.org/news_cente ... sp?a=ccsvi for Jack Burks article. But that is a great idea to use that as the letter. I have written to many large hospitals myself, including Syracuse, Rochester and Pittsburgh and always struggled with what to write - good idea!
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Postby mangio » Mon Jan 11, 2010 8:36 pm

Sharon,

As always, well said.
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Postby mangio » Mon Jan 11, 2010 9:10 pm

RenoandI and IrishBear,


Thankyou for the terrific youtube videos. IrishBear how lucky your children
are to have such a wonderful father, human being and role model.
I'm sure all this effort and challenge will help so
many and have such a big impact.
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Postby Sharon » Tue Jan 12, 2010 8:32 am

Jay123 -
Thank you for catching the error on the link to the MSAA article :oops: - I have edited my post

Sharon
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Postby jay123 » Tue Jan 12, 2010 9:33 pm

And believe it or not, after sending out 5 additional emails to different medical school hospitals here in the east just last night after I read Sharons suggestion about Dr. Burks article, I actually got a reply today from a dept chair that wants to talk to me, he is ready to try!
In my emails I use Dr. Burks article plus I even mention Dr. Putnam's work.

It works, everyone keep sending letters and emails to any interventional radiologist you can, the more people that look and hear about it the more that will get involved! I have sent out at least 10 over the last month.

Obviously I won't say who I am speaking with until positive steps are taken, but if this comes through it will be more good news!
Last edited by jay123 on Tue Jan 12, 2010 10:26 pm, edited 1 time in total.
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Postby cheerleader » Tue Jan 12, 2010 9:48 pm

jay123 wrote:And believe it or not after sending out 5 more emails to different medical school hospitals here in the east just last night after reading Sharons suggestion, I actually got a reply today from a dept chair that wants to talk to me, he is ready to try!
In my emails I use Dr. Burks article plus I even mention Dr. Putnam's work.
It works, everyone keep sending letters and emails to any interventional radiologist you can, the more people that look and hear about it the more that will get involved!
Obviously I won't say who I am speaking with until positive steps are taken, but if this comes through it will be more good news!


WOOT! This is the way, this is the way! End runs around the neuros right to the IR folks. They get it, they know what to look for and they can fix it. Go, Jay. Way proud of you for working in Dr. Putnam, too.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Sharon » Wed Jan 13, 2010 9:01 am

Jay123 -
This is great news! I think you have a nice average going for you... 1 out 5 responded :wink: Actually, you may not hear from the other four but that is okay ----you have placed the information in front of them... that is important. Hopefully, you will be able to report a general sense of your conversation with the dept chair. (no names necessary)

I encourage everyone to keep the neuros on their contact lists. I believe CCSVI is going to need a multi-disciplinary plan treatment for MS. We still have to deal with the the axons, the oligodendrocytes, the neurons ....the damage to our nervous system. We need everyone working together; the IR's, the neuros and the vascular docs.

Sharon
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Take over an MSS instead, cheaper and quicker ?

Postby MarkW » Wed Jan 13, 2010 10:57 am

Instead of starting a new body which will be very difficult and expensive to do, why not gain control of an MSS ? How many people vote in the Canadian MSS ? What is the minimum annual subscription ? Are non resident pwMS allowed to join ? Are people without MS allowed to join ? First, study the constitution.

I guess your goal is a voice for CCSVI. There are non obvious paths to that goal. Think outside the box.

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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