Please vote-My CCSVI video for AAN Toronto film fest

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

Please vote-My CCSVI video for AAN Toronto film fest

Postby pegmegrund » Wed Feb 17, 2010 8:31 am

Hi,

I created a video entry for the 2010 Neuro Film Festival for the American Academy of Neurology meeting in Toronto. The meeting is in April, and a 2 hour film festival is on the schedule.

The concept indicated by the AAN for the contest was ‘Let’s put our brains together to support brain research.’ What a timely topic for CCSVI! My video is called ‘Breakfast with Pam.’

If you like it, please consider rating it on YouTube by clicking the stars under the video. I believe that you have to have an account on YouTube and log in to rate the video…

There are several prizes, one of which is the Fan Favorite, which will be based on the YouTube rating. I’d love to win the Fan Favorite to help educate people, especially neuros, about CCSVI. Please feel free to share this link with others who might be interested in rating it but might not be on the TIMS forum.

Direct link to my video:

http://www.youtube.com/neurofilmfest#p/c/33/HFbgqa-sCUE

All entries (aka 'the competition') can be seen here on the Neuro Film Festival Channel:

http://www.youtube.com/neurofilmfest#p/ ... F0D99F14F8

Thanks!
Pam
Last edited by pegmegrund on Wed Feb 17, 2010 3:53 pm, edited 2 times in total.
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Postby LR1234 » Wed Feb 17, 2010 8:39 am

Cool vid! Don't forget Dr Ludgya, although Dr Simka has been pushing the CCSVI research forward, its Dr Ludgya who actually performs the liberation procedure.
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Postby pegmegrund » Wed Feb 17, 2010 8:51 am

Oh, yes, I did neglect to mention him. :oops:
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Postby markus77 » Wed Feb 17, 2010 8:52 am

i think its a great video but you give the neurological community to much credit .


I am so angry. I have just received a research update from the National MS Society. There are certainly indications of conflict of interest, Vonna! Or at least definite bias in reporting.

There are articles about about new drugs along with an article about Dr. Zamboni. On the surface this looks friendly and positive, right? There's a photo of NMSS bigwigs with Zamboni, all smiling. That makes it all the more poisonous as they present CCSVI in the most negative, misleading way possible, as well as taking the chance to stress immunomodulating meds!

They talk to us as though we were sheep!

The articles on drugs tell us that the news on the oral drugs is "wonderful!" despite cancer, deaths, rampant infections, immune dysfunction, horrifying side effects, etc., all of which are glossed over in a couple of PR-style paragraphs.

The Zamboni info, however, is stretched out in a loooong Q&A that is not only incorrect (which only those of us who are steeped in the info would know -- people reading it for the first time would have to accept the NMSS as having correct facts) but seems to have taken every effort to use every possible side effect as a scare tactic.

Warning people about the risk of infection at the puncture site for the catheter? Excuse me, that's just a step up from warning people about the risk of infection when they get blood drawn! I've had two catheter procedures myself -- catheter procedures are done daily on millions of people in the US -- and if they are specifically calling this out you know someone is grasping at straws to discredit Zamboni.

ESPECIALLY when they routinely promote CHEMO, infusions that carry the risk of death from anaphylaxis on the first infusion, PML, future cancers, and on and on . . . not to mentions the risks of infections at the sites of the permanent ports that are usually put in for people who get frequent infusions!

So, in the same newsletter, a couple of chirpy glossed-over paragraphs praising new meds that could kill us and have horrifying side effects vs. a patronizing, incorrect, misleading Q&A warning us of the "dangers" of what we intuitively and logically know is the most promising breakthrough we've seen in our lifetimes . . .

I am so thankful for the Internet.

And I have to say that while I love my local MS Society and its staff and all they have done for me, this little newsletter absolutely destroys my trust in the big machine of the NMSS and any info they pass on.

Thank you, Vonna, for your work!

Thank you, TIMS, for being here!

Thank you, Cheer, for everything!

Thank you, Dr. Zamboni, and everyone who is following in your footsteps!

OK, the newsletter came in my email and the article was entitled "More MS Pills on the Way." It had two links:

Clabridine

http://www.nationalmssociety.org/news/n ... x?nid=2569

"There were three cases of cancer in the low-dose group – a melanoma and carcinomas of the pancreas and ovary. One additional case of cancer occurred during a 6-month monitoring period after the trial ended, and one case occurred of a pre-cancerous cervical lesion."

“These published results are a true step forward in the development of oral therapies for MS,” said John R. Richert, MD, Executive Vice President of Research and Clinical Programs for the National MS Society.

Fingolimod

http://www.nationalmssociety.org/news/n ... x?nid=2568

A few participants experienced a transient reduction in heart rate and blockage of heart conduction (atrioventricular conduction block) which generally normalized after the first dose. There was a slight elevation of blood pressure starting during the second month of therapy. Macular edema (swelling of the center of the retina inside the eye) occurred more frequently with those on the higher dose of FTY720 in both studies. Elevations in liver enzymes, without accompanying symptoms, were common in those receiving FTY720. In both studies, a small number of serious herpes infections occurred, including two deaths from herpes infections that occurred in the TRANSFORMS trial in people taking the higher dose of FTY720.

“The published results and the company’s application for marketing approval for fingolimod are wonderful news for people with MS,” said John R. Richert, MD, Executive Vice President of Research and Clinical Programs at the National MS Society.

There was also an artcle on CCSVI:

Zamboni:

http://nationalmssociety.org/news/news- ... x?nid=2206

A: Though this is a decision that patients with MS need to make with their neurologists, we are not recommending experimental endovascular surgery at this time because of known adverse events and at least one death that occurred as a result of the surgical treatment protocol.

For anyone considering endovascular surgery, the following are some of the possible adverse events that need to be considered:
Complications and even death can occur including the risk of infection at the puncture site, risk for damage to the blood vessel, risk of internal or external bleeding if anti-coagulants are used, and, if a stent is inserted in an attempt to keep the vein from narrowing once more, there is a risk that the stent may become dislodged and go to the heart, which could cause death or the need for emergency heart surgery.

(Sorry, no quote from the good Dr. Richert to go with this -- just the long Q&A to show their opinion!! Read it yourselves!)

P.S. By the way, I'm not criticizing anyone who is using or choosing those therapies -- only the way the NMSS has presented things in this newsletter -- everyone makes the choices that work best for each individual!

OK, I came back to my post again. I know it's already too long, but really, think about it. How many deaths from PML? How many malignancies? How many people sick from truly serious side effects?

And they can seriously write that they don't recommend even testing for CCSVI or having a procedure because of the risk of infection from the catheter puncture site?

WHO lives with the disability? WHO pays the research bill? WHO should be making this decision?

GGGGGRRRRRRRRRRRR!!!!!!!!!!

OK, I'll go have my coffee now. Ahem. Smile
STAY REAL MY FRIENDS

dx 1989, spms
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Postby pegmegrund » Wed Feb 17, 2010 8:58 am

markus77 wrote:i think its a great video but you give the neurological community to much credit .


OK - I respect your opinion on that... but you still gave my video a high rating on YouTube, right? :lol:
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Postby markus77 » Wed Feb 17, 2010 9:55 am

that was not really directed at you. big pharma are going to be our biggest speed bump when it comes to getting CCSVI recognized. sorry i actually i forgot, i will go back and do it now.......
STAY REAL MY FRIENDS

dx 1989, spms
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Postby pegmegrund » Wed Feb 17, 2010 1:27 pm

markus77 wrote:that was not really directed at you. big pharma are going to be our biggest speed bump when it comes to getting CCSVI recognized. sorry i actually i forgot, i will go back and do it now.......


OK - Thanks, Markus


For everyone: While my profile says 'Getting to Know You' I thought maybe you'd like to know a few things about me. I feel like I know you all quite well. I don't post much, but have been reading the TIMS forum for CCSVI since I joined back in Nov 2009. I'm here reading every day...

I was on Dr. Dake's list of patients before things stopped at Stanford... I was a bit late getting on Dr. Simka's list. I've sent emails to Stanford. I've been sending letters to Interventional Radiologists in my area. I spent a weekend emailing and posting story ideas to the media - newspapers, TV, etc. If I lived closer to Hamilton, Ontario, or NY, or FL, I certainly would have been there in person to show my support.

This video is another way for me to help get the word out there.

Thanks!
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Postby HappyPoet » Wed Feb 17, 2010 2:01 pm

Peg, I sure will vote for your video! Way to go!

These press announcements regarding recent hires of Biogen Idec, makers of Avonex and Tysabri, might interest some of you -- keep in mind that Dr. Munschauer is on the board of the NMSS:

1. 1/26/10
The chief of the Jacobs Neurological Institute in Buffalo is leaving to become vice president of U.S. medical affairs for Biogen Idec, a pharmaceutical company best known for its multiple sclerosis therapies.

Dr. Frederick Munschauer III, an authority on multiple sclerosis and such vascular diseases as stroke, also serves as chairman of the University at Buffalo Department of Neurology...

Article: http://tinyurl.com/TheMunschauerPayoff
Also see: http://www.thisisms.com/ftopict-9984.html


2. 2/8/10
Biogen Idec ... announced that John R. Richert, M.D., will be joining the Company as a Senior Fellow in Neurology Research and Development and Nancy D. Richert, M.D., Ph.D., will be joining as a Fellow in Neurology Research and Development...

Dr. John Richert joins Biogen Idec from the National Multiple Sclerosis Society (NMSS), where he served as executive vice president for Research and Clinical Programs ...

Dr. Nancy Richert most recently served as a staff clinician in the Neuroimmunology Branch at the National Institute of Neurological Disorders and Stroke and as a consulting staff in the Diagnostic Imaging and Radiology Department at the Children's National Medical Center in Washington, D.C.

Article: http://www.tinyurl.com/TheRichertPayoff
Also see: http://www.thisisms.com/ftopic-9585-day ... asc-0.html

Note: Bold emphasis in quoted material is mine.

~HappyPoet
.
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Postby pegmegrund » Wed Feb 17, 2010 3:55 pm

Thanks, HP - appreciate the vote!
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Postby euphoniaa » Wed Feb 17, 2010 4:23 pm

markus77 wrote:i think its a great video but you give the neurological community to much credit .
******************************************

I am so angry. I have just received a research update from the National MS Society. There are certainly indications of conflict of interest, Vonna! Or at least definite bias in reporting.

There are articles about about new drugs along with an article about Dr. Zamboni. On the surface this looks friendly and positive, right? There's a photo of NMSS bigwigs with Zamboni, all smiling. That makes it all the more poisonous as they present CCSVI in the most negative, misleading way possible, as well as taking the chance to stress immunomodulating meds!

They talk to us as though we were sheep!

The articles on drugs tell us that the news on the oral drugs is "wonderful!" despite cancer, deaths, rampant infections, immune dysfunction, horrifying side effects, etc., all of which are glossed over in a couple of PR-style paragraphs.

The Zamboni info, however, is stretched out in a loooong Q&A that is not only incorrect (which only those of us who are steeped in the info would know -- people reading it for the first time would have to accept the NMSS as having correct facts) but seems to have taken every effort to use every possible side effect as a scare tactic.

Warning people about the risk of infection at the puncture site for the catheter? Excuse me, that's just a step up from warning people about the risk of infection when they get blood drawn! I've had two catheter procedures myself -- catheter procedures are done daily on millions of people in the US -- and if they are specifically calling this out you know someone is grasping at straws to discredit Zamboni.

ESPECIALLY when they routinely promote CHEMO, infusions that carry the risk of death from anaphylaxis on the first infusion, PML, future cancers, and on and on . . . not to mentions the risks of infections at the sites of the permanent ports that are usually put in for people who get frequent infusions!

So, in the same newsletter, a couple of chirpy glossed-over paragraphs praising new meds that could kill us and have horrifying side effects vs. a patronizing, incorrect, misleading Q&A warning us of the "dangers" of what we intuitively and logically know is the most promising breakthrough we've seen in our lifetimes . . .

I am so thankful for the Internet.

And I have to say that while I love my local MS Society and its staff and all they have done for me, this little newsletter absolutely destroys my trust in the big machine of the NMSS and any info they pass on.

Thank you, Vonna, for your work!

Thank you, TIMS, for being here!

Thank you, Cheer, for everything!

Thank you, Dr. Zamboni, and everyone who is following in your footsteps!

OK, the newsletter came in my email and the article was entitled "More MS Pills on the Way." It had two links:

Clabridine

http://www.nationalmssociety.org/news/n ... x?nid=2569

"There were three cases of cancer in the low-dose group – a melanoma and carcinomas of the pancreas and ovary. One additional case of cancer occurred during a 6-month monitoring period after the trial ended, and one case occurred of a pre-cancerous cervical lesion."

“These published results are a true step forward in the development of oral therapies for MS,” said John R. Richert, MD, Executive Vice President of Research and Clinical Programs for the National MS Society.

Fingolimod

http://www.nationalmssociety.org/news/n ... x?nid=2568

A few participants experienced a transient reduction in heart rate and blockage of heart conduction (atrioventricular conduction block) which generally normalized after the first dose. There was a slight elevation of blood pressure starting during the second month of therapy. Macular edema (swelling of the center of the retina inside the eye) occurred more frequently with those on the higher dose of FTY720 in both studies. Elevations in liver enzymes, without accompanying symptoms, were common in those receiving FTY720. In both studies, a small number of serious herpes infections occurred, including two deaths from herpes infections that occurred in the TRANSFORMS trial in people taking the higher dose of FTY720.

“The published results and the company’s application for marketing approval for fingolimod are wonderful news for people with MS,” said John R. Richert, MD, Executive Vice President of Research and Clinical Programs at the National MS Society.

There was also an artcle on CCSVI:

Zamboni:

http://nationalmssociety.org/news/news- ... x?nid=2206

A: Though this is a decision that patients with MS need to make with their neurologists, we are not recommending experimental endovascular surgery at this time because of known adverse events and at least one death that occurred as a result of the surgical treatment protocol.

For anyone considering endovascular surgery, the following are some of the possible adverse events that need to be considered:
Complications and even death can occur including the risk of infection at the puncture site, risk for damage to the blood vessel, risk of internal or external bleeding if anti-coagulants are used, and, if a stent is inserted in an attempt to keep the vein from narrowing once more, there is a risk that the stent may become dislodged and go to the heart, which could cause death or the need for emergency heart surgery.

(Sorry, no quote from the good Dr. Richert to go with this -- just the long Q&A to show their opinion!! Read it yourselves!)

P.S. By the way, I'm not criticizing anyone who is using or choosing those therapies -- only the way the NMSS has presented things in this newsletter -- everyone makes the choices that work best for each individual!

OK, I came back to my post again. I know it's already too long, but really, think about it. How many deaths from PML? How many malignancies? How many people sick from truly serious side effects?

And they can seriously write that they don't recommend even testing for CCSVI or having a procedure because of the risk of infection from the catheter puncture site?

WHO lives with the disability? WHO pays the research bill? WHO should be making this decision?

GGGGGRRRRRRRRRRRR!!!!!!!!!!

OK, I'll go have my coffee now. Ahem. Smile


Markus, isn't most of this post a direct quote from another poster? All but the 1st sentence? I reread the thread and she gave permission to use it, but it should be noted as a quote.

http://www.thisisms.com/ftopic-10274-da ... sc-15.html
-
-
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 pegmegrund » Wed Feb 17, 2010 7:32 pm

Thanks, euphoniaa, for mentioning that. I didn't realize it was from another post... Makes more sense now.
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Postby pegmegrund » Thu Feb 18, 2010 7:15 am

Thanks for the help in rating my video. I have 19 ratings, and best I can tell I'm in the top 3 or 4.

Please check out my video and give it a rating (5 stars, I hope :lol: if you like it) and feel free to post this out onto other sites - Facebook, etc.

It would be great to have a video about CCSVI as the Fan Favorite at the neurologist conference!

Here's the link again:
http://www.youtube.com/neurofilmfest#p/c/33/HFbgqa-sCUE

Thanks!
Pam
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