Thursday January 18th 2018

CCSVI Who are we fighting, will you be heard?

Where is the media coverage for CCSVI, who will speak up for us, how do we get more research done as a group How do we come together? Here is a link to a petition I started www.gopetition.com www.facebook.com Huffington Post article and this vlog mentioned www.huffingtonpost.com CTV Folloiw up story and new trials news.sympatico.ctv.ca One of Dr. Zamboni’s research papers: jnnp.bmj.com

Posted by Lani

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25 Comments for “CCSVI Who are we fighting, will you be heard?”

  • 9gabbycats says:

    You are right! We here in the land of freedom have no freedom! I don’t know who it is that is stopping doctors from going ahead with the treatments but that’s why I started a plea for a class action. We need an attorney to find out! Please join classactionworld com then in the forum find the CCSVI string. We need to get more Americans telling their story that they are not being treated for CCSVI because of thier pre-existing condition of MS. Please help get the word out in the states! Thanks!

  • mcoolle says:

    am 20 i have ms 3 years, u might think that US is only place that wont do research on CCSVI this is reality world wide, and mb there are few medical teams that are preventing the cure but they have the grip over all others.

  • cbschu says:

    I bet the story breaks in US media soon. After Buffalo press release. Wonder how many investors are dumping MS drug co stocks this week??? or buying stock in CCSVi imaging machines and venous stents.

  • Oozingmachismo24 says:

    Another thing please understand that the MS society is not the enemy. Understand EVERY ms treatment(dmd) out and in the pipeline had the MS society pushing it. They are looking into ccsvi right now. CCSVI will stand or fall inside of 6 to 12 months. My big fear is the thoery falling and crushing all hope. That is why we have to validate CCSVI before we start directing anger and frustration towards the people that are trying to help us..

  • Oozingmachismo24 says:

    Misinformation is whats spreading like wildfire.People are overstating what ccsvi is. its a theory not fact. No one has been able to replicate the data thus far. There are MANY variables regarding ccBefore we start implementing it as a diagnostic method let alone performing invasive experimental dangerous procedures to correct it we first need to understand it. 100% of ms patients having ccsvi is unlikely because a huge number of MS patients are misdiagnosed. Thats only one variable out of MANY.

  • Alexknobsob says:

    Zamboni’s proof

  • MSVlogSupport says:

    @Alexknobsob I always look red in the face have for years.

    Thanks Alex!

  • Alexknobsob says:

    That is the disadvantage of a Corporate control driven market. It could also be a terrific advantage to use that weight.

  • Alexknobsob says:

    You look a bit “too much stagnant blood in the head” here. Well read and thought out.

  • RealBudSmokinKilla says:

    our gov is corrupt bottom line put ur life in the hands of god this is temporary

  • Jessica197 says:

    Great video! To confirm what you speak of regarding media coverage in the U.S…….
    Today there was ALOT of media coverage via newspapers and news stations in the U.S. regarding studies of two oral pills yet to be approved. Yet still NOTHING in the media in the U.S. of CCSVI…. not even a mention! (continued below)

  • Jessica197 says:

    It all comes down to the all-mighty dollar. So sad! If they continue trials and confirm CCSVI is indeed a cure I cant help but wonder if a) These drug companies try to buy-out Dr. Z and/or b) Would this cure be affordable/covered by insurance
    I really hope Mrs. Obama steps up and speaks out. This is just beyond ridiculous that we are the last to give it any main-stream coverage…

  • rocketav8r says:

    Google Joe Gamble Pilot and you will read about me everywhere. I’m on facebook as well. Took LDN with copaxone,stopped, then betaseron,stopped and chickened out on the Tysabri. Just a couple orals now.

  • MSVlogSupport says:

    I know that is a personal choice. I have thought about it that is for sure, since I hate the drug I am on.

    But afraid not to be on anyting. Keep us updated on how you are doing. Will you something like LDN or supplements, diet etc.?

  • rocketav8r says:

    I stopped taking my disease modifying treatments. I believe that the medical folks were way off with MS until the CCSVI came out.

  • inzition says:

    Everything is about money, MS is the golden egg for pharmaceutical and Medical industries. Tell everyone about this, tell everyone. Boycott the newsmedia. Fight those fuckers.

  • MSVlogSupport says:

    Thank you so much and welcome to the vlog.

    Andrea

  • shecklesdiva says:

    I will share this with all of my Social Networking sites.

  • shecklesdiva says:

    I believe word of mouth is our only option right now.Together we can make a difference. Keep doing what you are doing and continue to take care of you so that you can stay healthy.

  • shecklesdiva says:

    I have attempted to make contact with Dr. Sanjay Gupta without success. I decided to do like you create my own videos and post them on all of the Social Networking sites including CNN FB etc. I also started a Petition requesting Congress declare September National Awareness Month for Devic’s Disease to generate more exposure to increase funding for research etc.

  • shecklesdiva says:

    I became aware of CCSVI through a friend in a Devic’s Disease support group. I agree with you about mainstream media. I have been calling emailing writing all the News Stations in Henderson/Las Vegas Nevada as well as the News Papers regarding a rare and often fatal disease known as Devic’s Disesae/NMO. I have been told it is not “News worthy”.

  • MSVlogSupport says:

    I had a DO for my primary when I had insurance and she was the best. Very open minded like yours. Good luck getting tested and keep us posted.

    Merry Christmas,
    Andrea

  • justbran12 says:

    12/23/2009 I just found out about this today from a friend of mine who also has MS, I just had a MRI and neuro apponitment, my next is in 3 months, this will be asked, I have a DO for nuero not a md, he is young and open to many thing he piscribed LDN and Pot, so he may listen and be open to it. my friend is going to his neuro right after new year lets see what happen. If not I will go out of the country DR, Canada after I have a ulta sound and make sure and I will have it done.

  • steffi2italy says:

    Yes, and Zamboni’s further activity blocked in Italy shortly after that!

  • Lynne Heal says:

    CCSVI is a miracle thats been waiting to happen for us all with MS.Dr Zamboni has been a true hero for us with highlighting so much on line


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