This Is MS Multiple Sclerosis Community: Knowledge & Support

Hello,

My name is Loreena Weideman Buhl and I am currently doing online research for a Canadian TV documentary "The Italian Cure" about CCSVI/Liberation Therapy and I came across this forum for MS patients.

Would any participants be willing to let Zoot Pictures/Emma Pictures use your video testimonials and/or blogs?

This is the blurb from "The Italian Cure": The Italian Cure is a one hour documentary that delves into the science, controversy and drama around Liberation therapy, producedby Zoot Pictures Inc. in association with the Canadian Broadcasting Corporation to be broadcast on The Nature of Things in 2012.

Please take the time to verify the truth of this email at the following website, http://www.zootpictures.com/?s=inproduction.

I can be reached through my YouTube page or my personal email address - loreenawb@gmail.com.

Thank you for taking the time to read this message and for your help.
Loreena

Loreena,

This is great. Please make sure you speak to Dr. Mark Freedman, of the Ottawa General Hospital MS/Neurology Unit.

He is such a driving force in the CCSVI endeavour. He may make you sick and want to puke because of his arrogance and "God" complex...but look past that! After all, he being one of the top researchers and experts on MS in Canada, has labelled CCSVI as a hoax and that we are a "cult" of believers.

If you have a chance, take your camera lense and stick it up his fat pharma loving ass. This way he will be comfortable in an interview knowing that his blessed poop will be on film too.

Best to you in your efforts!!!!

Hi Lorreena,
That name needs to be changed! Getting angioplasty done to correct a vein problem does not cure the problems with MS!

Loreena--
PLEASE visit CCSVI Alliance and read. Venoplasty is not a cure for MS. It is a procedure to relieve a vascular condition associated with MS. We have pages of actual, peer-reviewed research at http://www.ccsvi.org
Your title and subject matter (YouTube videos and bloggers) for this "documentary" is troubling.

If this is an attempt by mainstream media and pharmaceutical companies to portray CCSVI as lunacy and a social media phenomena, you will not find many willing to participate. And it's been done before. "Hope and the internet" is not a new angle on this story.
Most pwMS are well-read and educated as to CCSVI science. And they understand that this is not a cure.
Why not be the first to discuss the science?

Here's a book written by the second American treated for CCSVI-Marie Rhodes. It is published by McFarland Health and is a five star rated book---Marie would make a wonderful interview. She is not a blogger. She is an author who refers to peer-reviewed science.
http://www.amazon.com/CCSVI-Cause-Multi ... -1-catcorr

Dr. Zamboni's discovery was of truncular venous malformations, a congenital defect in the jugular and azygos veins, that take a lifetime to manifest as changed hemodynamics and damage to the brain and spine. Many environmental factors can make CCSVI worse. It is a complex situation, and deserves true investigative reporting and scientific knowledge.
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Controversy and drama, and also science.
Aren't controversy and drama two words for the same thing? Perhaps they cancel each other out, leaving only science.

Here are the google scholar returns on CCSVI:
http://scholar.google.com/scholar?q=ccs ... as_sdtp=on

And the abstracts presented at the ISNVD International Society of Neuro Vascular Diseases:
http://ccsvism.xoom.it/Convegno_ISNVD.html

some good reading in both places!

Please change the name. Liberation treatment is not a "cure". It is a treatment. It is an alternative to taking government approved drugs that are not guaranteed to work either. Just like the drugs the angioplasty/venoplasty does not work for everyone.

.I AM NOT SCREAMING IT IS JUST I AM A ONE FINGER TYPER LOL..THANK-YOU ..I WANT TO TELL YOU ABOUT MY M.S. STORY...I WAS DIAGNOSED IN 2000 HOWEVER THEY WERE TREATING ME FOR A EAR INFECTION FOR 11 YEARS PRIOR SO NOW THEY FIGURED I HAD M.S IN 1989...I WORKED UNTIL 2006 AND FINALLY COULD NOT DO IT ANYMORE..MY SWEETIE AND I MOVED TO SAKATCHEWAN ,CANADA FOR CHEAPER LIVING WE CAME FROM ALBERTA,CANADA I WAS ON ALL THE SO-CALLED M.S. DRUGS EVEN CHEMO AND THEY JUST MADE ME WORSE & SICK WE WENT ON HOKLIDAYS TO CUBA NOV/09 AND WHILE WE WERE THERE A T.V PROGRAM FROM CANADA CAME ON W5 WAS SAYING THEY FOUND A CURE FOR M.S BUT WE ALL NO IT IS NOT A PROVEN CURE[CCSVI TREATMENT] WE GOT BACK TO CANADA AND I WAS GOING DOWNHILL FAST SO MY SWEETIE GOT ON THE INTERNET TO DO RESEARCH ON CCSVI TREATMENT...SHE GOT ME INTO A STUDY IN MEXICO AND MY FEWELING WAS "WHAT DO I HAVE TO LOSE' SO WE WENT IN JUNE/10 AND GOT THE TREATMENT...IWAS THE FIRST MALE DONE IN MEXICO..AFTER WE WERE SITTING BY THE OCEAN DRINKING CORONAS AND I SAID TO MY SWEETIE,,,I DO NOT THINK IT HELPS SHE JUST SMILED AND SAID 'YOU REALIZE HOW HOT IT IS IT IS 110* F" BEFORE TREATMENT THERE IS NO WAY I WOULD HAVE HANDLED THAT..THE NEXT DAY I NOTICED NO FATIGUE AND THE COLOR WAS COMING BACK TO MY LEFT SIDE...WOW,SO WE WENT BACK TO CANADA PEOPLE WERE NOTICING BIG IMPROVMENTS IN MY SPEECH,I COULD CONTROL MY BLADDER AND BOWELS AGAIN..MY WALKING INPROVED SLIGHTLY HOWEVER I DO NOT USE MY CANE ANYMORE OR MY SCOOTER AND MY EYESITE IMPROVED EENOUGH TO GET MY DRIVING LICENSE
AND MY GENERAL DOCTOR NOTICED BIG IMPROVMENTS...MY NEURO SAID "
YOU ARE THE SAME NO IMPROVMENTS ?? SO I QUIT TAKING ALL M.S. DRUGS MUCH TO HIS DISMAY.. THE TREATMENT GAVE ME MY LIFE BACK..I AM VERY BITTER WITH MY NEURO AND THE M,S. SOCIETY FOR STOPPING THIS I KNOW IT WORKS..FOR SOME PEOPLE THEY GET LITTLE IMPROVEMENT BUT THE TECHNOLEGY IS GETTING BETTER NOW THEY AREE USING BIGGER BALLONS SO LESS RESTENOSIS ALSO THEY ARE TREATING THE VALVES IN YOUR JUGULARS WHICH BEFORE WAS USALLY WHAT CAUSED THE RESTENOSIS THEY ARE CHECKING FOR OTHER THINGS LIKE MAY THURBERS,LYME AND THEY ARE NOW TREATING OTHER VEINS LIKE SINUS IT HAS COME ALONG WAY IN A YEAR PLEASE FEEL FREE TO PRIVATE MESSAGE ME FOR ANY OTHER QUESTIONS WE HAVE TO TAKE CARE FOR US
UPDATE: IN MARCH 2011 MY HEARING CAME BASCK IN MY LEFT EAR IT WAS ABOUT 50 % NOW IT IS 100% I GOT MY HEARING TESTED AND NOW THEY ARE SAYING MY RIGHT[WHICH WAS MY GOOD EAR] IS WORSE THAN MY LEFT

Loreena
One of the many things you can investigate is how and why all vascular research of last century regarding MS was denied, ignored and discarded. In the end, that is the material that perhaps inspired Zambonii and becomes a solid ancient basement for his work.
I am already imagining documentary starts up by your abruptly launching this question into the audience: MS, who really benefits in keeping the status quo?

Please do not refer to this as a cure. It is most likely an excellent means of alleviating symptoms, and may reduce progression but it is not a cure. I wold hate for the world to think MS has been cured and cease supporting research. Much remains to be done to restore myelin and repair damaged axons.

I also would suggest you refrain from capitalizing the word liberation. The term was not originally used to comment on MS symptoms, rather, it refers to the liberation, or restoration of proper free-flowing blood circulation. One should only capitalize the descriptor of a treatment if it is a proper name (after the inventor), ie: the Zamboni treatment.

Thank you all for the comments and directing me/us to further research and information. I have mentioned to the film companies that many people do not like the term 'cure', and they are familiar with the unhappiness of the title. Thank you!

Loreena, If you need to seek advice from a journalistic point of view I would like to direct you to Anne Kingston from Macleans. She is the only reporter in the national media that has done the science and attended conferences on CCSVI.

Please, as a nurse and someone who has been treated, do not sensationalise your documentary. You have the power to move the national agenda forward on this if you stick to the facts. We are all so careful to keep this discussion on science. Joan Beal would be an excellent help to you.

The Nature of Things is a great show, and features one of my personal heroes, Dr. David Suzuki. I am confident they will do a good job on the science. It is not the "Italian Cure", but a legitimate development in science. In the right hands, it is a good treatment for at least one terrible disease. I and many others can say from experience it does not "cure". Nothing can cure a malformation, I think.

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

Hi Loreena

If possible talk to a good occupational therapist about the quality of life issues. These are the issues that the neuro's discount as not relevant. These therapists see what weakness, numbness etc do to our ability to live our lives. I'm pretty sure that the sensitivity test they do on your hands blinded couldn't be altered because I want to feel better.

I also enjoy "The Nature of Things". It is a great show BUT like every other show on TV they choose what side of an issue they are going to present and then look for data to support that side. The chosen title suggests that this documentary will sensationalize this issue like so many have done before. It makes for better TV. This is a well respected show and I am very concerned that it may set back the progress on CCSVI research in Canada that most of us have been fighting for.

99% of the population, including the medical profession, have learned all they know about CCSVI from the media.

Bruce.

Need to be careful about not calling it a cure too, as it may just be that for people in the early stages.

It's still early days, nobody can claim it to be a cure or not to be cure, for people in the early stages it looks very hopeful to be a cure to me.