MS Society’s stand sparks resignation

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Ted Warren has resigned as chairman of the St. John’s-Mount Pearl chapter of the MS Society of Canada over the national association’s stand on a new, but controversial treatment.

“I am writing to express my profound sense of disappointment with the MS Society of Canada's decision to oppose clinical trials of the so-called CCSVI therapy for treatment of multiple sclerosis. I believe this attempt to undermine the growing national consensus supporting the need for such large-scale trials does a serious disservice to the very group the society professes to serve, namely those who live each day with this condition,” Warren wrote to Yves Savoie, president of the MS Society of Canada.

This province has said it will support national clinical trials of the treatment.

Top Canadian and American scientists now say there’s not enough evidence to back claims by Italian Dr. Paolo Zamboni that blocked neck veins are linked with MS.

The Canadian Institutes of Health Research held a news conference Tuesday to make recommendations on MS research priorities. The head of the federal agency which funds health research said the experts weren’t convinced Zamboni’s procedure works and is safe, and so they say it’s too early to back clinical trials.

“There was a unanimous recommendation by the members of the working group not to support such a trial at this stage,” Alain Beaudet said.

“Quite simply, the experts agreed that there is an overwhelming lack of scientific evidence on the safety and efficacy of the procedure.

“Nor is there any evidence at this time that there is a link between venous malformations and/or impaired brain venous drainage and multiple sclerosis.”

MS has long been thought to be an autoimmune disease. But Zamboni contends that iron builds up in the brain because blood isn’t draining properly.

Warren said he’s spent the last few months defending the society’s “nuanced approach, first conducting basic research on the theory to gauge its validity, but the growing tide of anecdotal evidence from patients who have experienced dramatic improvements in their condition cannot be denied.”

“For those of us who have to live with the the harsh reality of MS ... the mornings when you awake to discover that one or more of your senses has been compromised by something that happened while you slept ... the days when you find you can no longer do the things that define you as a person ... the nights when you lie awake in terror, fearing how much more of yourself might be lost before the next dawn breaks ... for us, the personal accounts of recovery and return to the way things were before MS represent more than just compelling stories. They represent that all-too-rare opportunity for hope that we, too, can look to a better tomorrow. And that hope, in itself, is a powerful medicine,” Warren said in his resignation letter.

“I've watched the sheer delight in the faces of MS patients when they see a person who went from barely walking to building rock walls after receiving CCSVI treatment. I've shared their tears as we heard of a wife’s first dance with a formerly disabled husband who has now returned to all the precious joys of a ‘normal’ life. And finally, I’ve watched those same faces contorted in anger because the organization that is supposed to be devoted to helping them is refusing to acknowledge the sense of urgency that comes from the cruel reality of life with a degenerative condition.

“This is not a uniquely Newfoundland phenomenon. There are groups of MS patients in every part of this country who have been quietly lobbying for all 10 provinces to step up and fund a universal clinical trial for all Canadians living with MS. By stubbornly resisting this groundswell, the society has placed itself in the position of actively opposing an initiative that is supported by the vast majority of Canadians living with MS. Surely, an untenable position for this organization to take.

“What is perhaps most disturbing about the society’s stance in this matter is the lack of sensitivity it shows to the hopes and dreams of those who have the most to lose in this whole debate, namely individual MS patients. If there is any possibility that there might be an effective treatment out there, perhaps even one that can restore what has been lost, the MS Society should be doing everything in its power to make that treatment available to those who need it most at the earliest possible date. To do as the society has done this week and stand squarely in the way of this process is quite simply wrong.

“I urge you to reconsider this ill-advised, paternalistic policy before it is too late.”

Organizations: MS Society of Canada.This, MS.The Canadian Institutes of Health Research

Geographic location: Canada, Newfoundland

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  • Mariia Dekleer
    June 01, 2013 - 12:11

    Thank you Mr.Warren. Thank you for being ethical and standing up for the truth!

  • Charleen Ades
    May 11, 2011 - 10:19

    Mr. Warren, I appreciate your disappointment with our MS Society; enough to force your resignation from the MS Society that you supported for years. The following article of mine was printed in The Chronicle Herald, March 23,2011. This reitterates your thoughts. MOVE ON MS NOW A person with MS who was scheduled for the `liberation treatment`in April in Albany, N.Y. was hospitalized in Halifax recently. He & the family pleadedwith our provincial health minister to authorize the treatment in Canada as he was too ill to fly to the U.S. for his appointment. He has now died! Our minister said `there was nothing she could do`to authorize the liberation treatment for MS in Nova Scotia. It is unbelievable that our voices have not been taken seriously enough for our governments, both federal & provincial, & our medical professionals to act quickly to approve this treatment. I ask all who are involved in the witholding of this treatment, `Would you not strive for this treatment for your son or daughter, husband or wife who suffers from MS & is failing in front of your eyes!! I personally cannot turn my back on my daughter who has MS & is waiting treatment in Albany! To me, it is unconscionable that our voices are not being taken seriously. Action is needede & it is needed now to help MS sufferers. Charleen & Michael Ades, Tantallon (on behalf of daughter Tiana, 41, who has suffered from MS for 19 years)

  • wayne fenton
    September 05, 2010 - 19:10

    Great move Mr. Warren , maybe someone else will do as you have and follow you wasnt too sure about the society before but i think you made it clear what their agenda is . Thanks again.

  • wayne fenton
    September 05, 2010 - 19:04

    Great move Mr. Warren , maybe someone else will do as you have and follow you wasnt too sure about the society before but i think you made it clear what their agenda is . Thanks again.

  • chuck
    September 04, 2010 - 17:55

    Hmmm...stupid is as stupid does... The Society of Interventional Radiologists is going in the right direction: http://www.sirweb.org/news/newsPDF/Release_JVIR_MS_final.pdf Interesting given that THEY are qualified to assess and administer the treatment NOT NEUROLOGISTS. Neuros are NOT QUALIFIED to address such issues...their understanding of MS remains theoretical at best as the cause remains unknown. They simply rely upon the CATCH-ALL: auto-immune description...and prescribe ridiculously harsh chemicals with far greater side-effects than venoplasty. It's nice we are starting to see a greater segment of doctors (SIR) taking a stand against neuros non-sensical ignorance as opposed to letting those who have been "liberated" to advance the cause - only to be condemned as anecdotal. There's OBVIOUSLY something to this...a Calgary girl did a 10k run 3 months after venoplasty in a top German University Hospital by a world-renowned IR.

    • Karen
      September 05, 2010 - 09:24

      Thank you Mr. Warren for standing up for those of us suffering with MS. It's so sad to learn that the MS Society looks the other way and lacks the integrity to do the right thing. If these "people" that refuse to support CCSVI had to spend one day in our shoes or had a loved one with this cruel disease, I'm sure that they would do whatever it took to get this treatment. I have been diagnosed with MS for over 10 years and had the Liberation procedure. Ten years of feeling no hope for the future and now I'm getting my life back. As angry as I am with the MS Society, I could never wish MS on them, but I truly hope that they stop letting greed dictate their decisions.

    • Karen
      September 05, 2010 - 09:28

      Thank you Mr. Warren for standing up for those of us suffering with MS. It's so sad to learn that the MS Society looks the other way and lacks the integrity to do the right thing. If these "people" that refuse to support CCSVI had to spend one day in our shoes or had a loved one with this cruel disease, I'm sure that they would do whatever it took to get this treatment. I have been diagnosed with MS for over 10 years and had the Liberation procedure. Ten years of feeling no hope for the future and now I'm getting my life back. As angry as I am with the MS Society, I could never wish MS on them, but I truly hope that they stop letting greed dictate their decisions.

  • LaVonne
    September 04, 2010 - 02:32

    What an honor to have someone of your caliber stand up for those who can't. I am from the USA and am on my way to have the procedure done in 3 weeks, I thank God I have the freedom of choice to be able to try this. I and my younger sister are both getting it. We are 32years and 28 years "living" with this awful disease. We both have children and grandchildren we are pioneering this for, it is the beginning of something we pray will improve our quality of life. We also in the US feel abandoned by the very ones who we have all these years believed and put faith in to find relief for our suffering, only to realize they are the very ones who chose to try and block us from getting help. I truly believe the root of this evil is the all mighty dollar. The MSS have lost all of our and our large extended families support. You, Mr. Warren, are a man of compassion and honor!. It is a privilege to know there are some who care for more than the jingle of gold, Canada is lucky to have a citizen of your caliber, you make mankind proud!

  • Mara Coote Freeman
    September 02, 2010 - 22:00

    Bravo! Extremely well said and please forward your letter to all provincail health ministries. After all they are paying the bill for federal decisions and there are major issues on the "expert"group was choosen to advise Health Canada. Your stand is the moral and honourable one.

  • Bev Bentley
    September 02, 2010 - 13:28

    THANK YOU Mr. Warren for your integrity and INCORRUPTIBILITY!! THANK YOU Mr. Warren for STANDING UP FOR ALL OF US WHO SUFFER DAILY. Evelyn Opal started the MS Society in Canada in 1946 to give HOPE for a better future and find a possible cure for people living with MS. The Canadian Government, with the advice of some ill informed doctors and the MS Society are actually trying to take our hope away. Shame on all of them. My son was treated in Poland on June 23rd. His pain has been reduced by 90%!!!!! He has had NO spasms since and his memory is better. He is no cured, yet. But his quality of life is so much better. This is only the beginning of so much hope. We have hope because "top Canadian and American scientists" and other top scientists from around the world are recognizing the chance to "DO NO HARM" by treating people who have CCSVI. Mr. Warren, would you consider starting a NEW MS Society that would live up to it's 'mission statement' and be based on what the members would like rather than how the MSS is today? I believe there are thousands of us who would become members over night. I wish you would consider this as we need people like you on our side, not just for this issue but for all of our issues/concerns and needs. Thank you in advance for giving this some thought. You deserve a medal for listening to us......Most sincerely, Bev

  • Patricia Allen
    September 02, 2010 - 10:24

    As a former member of St.John's/Mt.Pearl chapter, you should be lauded for your stance on this issue.....an "end-stage" Ms'er now living in Halifax

  • Sea-Dog
    September 02, 2010 - 05:21

    Well done Ted---you have done us all proud, I hope the other members follow your lead, if they dont they should be removed because it is obvious that they are in the pockets of the big drug companys. As for the Federal Minister--- ooops i mean puppet minister, she should resign today----its obvious that she is not in touch with the reality of the situation.

  • Yvette Vindeg
    September 02, 2010 - 02:46

    Thank you Mr. Warren for your courage to stand up to the National MS Society. I wonder if the MS Society realizes what it is doing to all its possible fun raising possibilities. I know of many people who are now refusing to donate money to the MS Society for research. These people say they would rather donate to help someone less fortunate obtain the funds so they can go outside our Country to obtain this treatment.

  • Ken Bruce
    September 02, 2010 - 01:44

    My wife Evelyn had 4 blockages opened in Mexico 6 weeks ago with staggering results! For the MS society to ignore the increasing proof that blood flow is important says it all. There cannot be any other conclusion to be drawn. They have had the last dollar from us, our families, and our friends. Even if CCSVI and MS are not related, it's obviously not in the societies best interest to share any cure they might find. Yes, we're ANGRY! Thank you Mr Warren for your honorable decision.

  • Julie Somers
    September 02, 2010 - 01:38

    Ted Warren has earned a place in the hearts of those and their familes who live with MS, not just in Newfoundland and Labrador but across Canada. My only concern is that with his resignation we will lose the passion within the inner circle that we will need to "fight the fight" of this abuse of human rights in terms of access to health care.

  • dlynn
    September 01, 2010 - 22:58

    Thank you Mr. Warren, even though I'm from the U.S., it sends a powerful message. For that I'm grateful. God Bless!

  • Conrad Greer
    September 01, 2010 - 22:33

    The expert panel was made up only of professionals that have been dismissive of CCSVI from day one. It seems that deciding who to invite to the panel was the critical step in determining its outcome. That is good back room politics for the CIHR and MSS point of view, but a very poor way to conduct scientific debate.

  • Dr. Don Hartt
    September 01, 2010 - 22:31

    Thank you Mr. Warren for being so brave. As a physician, I am proud of you for doing the right thing. I cannot say this for any of the members of the CIHR.

  • Roy Svensson
    September 01, 2010 - 18:07

    I was diagnosed in 1987.I was on a REBIF study for 7 years,which didn't help me any.Yet when something like CCSVI comes up,the bodies who regulate everything, say NO.Of course this is not anything that puts money in their coffers.

  • Trevor Waddilove
    September 01, 2010 - 15:55

    I am from the UK but your honourable stance is seen all round the world. Give the man a MEDAL!

  • Debbie
    September 01, 2010 - 13:36

    Thank you Mr. Warren for standing up alongside those of us who have this debilitating disease. You would think that a society for people living with MS would certainly be the biggest supporter for this treatment. They obviously don't know what its like to live with the fear of what tomorrow will bring. I'm sure this is not the end to this story and until we can believe these orgnizations are on our side and not have some other motives we will wait and see what happens and hope it's not too late.

  • Janine Caudle
    September 01, 2010 - 12:35

    BRAVO Mr. Ted Warren. Thank-you for standing up for what I feel is right! Thank-you for standing up and being counted!! I am a person that has traveled from Peachland British Columbia to Cabo San Lucas, Mexico, and had the Liberation Procedure, July 15th 2010. Yes, I have had many positive/wonderful reactions from my body after the procedure! My greatest concern is that my veins might "clog" again, because of being irritated from the "ballooning". BUT, IF this never happens I am so happy to be on the 'front lines" of discovery! If stenosis does happen in the months to follow--- the study now should be to figure out what can/will be done to help us, who end up in this situation! I feel that we are heading in the right direction by perfecting the Liberation Procedure; which could very well be a treatment for CCSVI; ---the initial cause of MS! (Big Question: ---WHY does it appear to effect peoples who reside in the colder/Northern Hemisphere most? To conclude, I am very happy to be on the frontlines of this "march" for the truth! I would much rather step forward in the name of prevention, then fall into the "clutches" of drugs, which seem to be there only to mask the symptoms. Happy to be "Liberated"! Sincerely, Janine Caudle Peachland B.C. And again, Mr. Warren, my hat comes off to you.

    • Nina Milber
      September 01, 2010 - 14:14

      Thank you Mr. Warren - You are an ethical man. THE MS SOCIETIES MISSIONS IS NOT TO END THIS DISEASE. IT IS TO PERPETUATE IT FOR ANOTHER TWO CENTURIES IF THEY CAN. IT IS BIG BUSINESS, FOR BIG PHARMA, NEUROS, ASSISTIVE DEVICE COMPANIES, AND THE 30 THOUSAND+ EMPLOYEES OF THE NMSS. don't give a dime to them -

  • Michel Sastre
    September 01, 2010 - 12:04

    Mr. Warren is obviously a man of honour. Nothing against singers, actors, etc., but I think he should be honoured with the Order of Canada

  • JMag
    September 01, 2010 - 11:52

    It really was such a terrible day yesterday for persons with MS in this country. It appears that the MS Society is no place for someone like Ted Warren, who obviously has the guts to stand on what he feels is right instead of what the MS Society tells him to think. I only hope the rest of those within the Society who are at odds with the MS Society's undermining of this treatment will follow Mr. Warren's lead, and let the MS Society, our governments, and the medical community know that they too cannot condone the hateful and self-serving tactics that the MS Society has been putting forth at the expense of those they are supposed to be helping.

  • ValH
    September 01, 2010 - 11:22

    mmmm... goes against the society mission statement: The mission of the Multiple Sclerosis Society of Canada is: To be a leader in finding a cure for multiple sclerosis and enabling people affected by MS to enhance their quality of life.

  • Cal Westover
    September 01, 2010 - 10:21

    We need more people like Ted Warren to stand up to the 'mighty MS Society'. I too am dissappointed in the MS Society becasue their oppositon to clinical trials,contradicts their own mission statement. Part of their 'mission statement' specifies that they wish to 'enhance the quality of life' for those living with MS. Wouldn't approving CCSVI trials be a good place to start ?

  • Debby
    September 01, 2010 - 10:12

    This must be such disheartening news for those battling MS...I really dont understand why anyone would oppose any clinical trial that may give someone back some quality of life....Sure, it may not work for all patients, but, even if it helps some, isnt that worth it...Not all treatments work for everyone, but I know, that if it were me, and there was even a remote possibility of some type of relief, I would jump at the opportunity, and I believe most MS patients would want at least the opportunity to avail of this procedure...

  • Lauri Leach
    September 01, 2010 - 09:55

    Thank you Ted for standing up for what I believe the MS Society should be doing, advocating for MS Patients!