Friday, August 13, 2010

GINGER MacQueen's Rebuttal

Ginger MacQueen’s Rebuttal to Paula Simon’s Article in The Edmonton Journal
(Simon's article is being picked up on the wire, like a virus)

Dear Editor,

Clearly Paula did not do her research! Zamboni's theory is not based on veins blocked by iron as she states in her article. CCSVI is chronic cerebro spinal insufficiency and is theorized to be caused by blocked internal jugulars and/or azygos veins that drain the blood from the brain back down to the heart. The iron deposits are believed to be the lesions in the brain and spine that have always been classic signs of multiple sclerosis. Multiple sclerosis by definition means "many scars".
   To call Zamboni's theory a "unicorn" is so grossly childish it boggles my mind. CCSVI is not a fairy tale creature, a blind alley or a false hope. CCSVI is a real medical phenomenon that has been scientifically validated and published in medical journals. Veins are made to move blood.
   Blocked veins are therefore bad. Regardless if there is a link between CCSVI and MS any person with dangerously blocked veins should be able to have them fixed whether they have a pre-existing condition of MS or not.
   I am appalled at Paula's cynical and heartless view of not following Saskatchewan's lead in funding research and clinical trials. If we all thought this way we would have never had such surgical breakthroughs like heart bypass and brain surgery! So essentially, Ms. Simons is telling the roughly 75,000 Canadians afflicted with MS is that they are not important enough for our government to risk funding studies that could potentially rid them of suffering and consequent death? Simons says " would be an enormous error in judgment for the Alberta government to sanction or fund this surgery-- or to divert any of the province's limited research and public health dollars toward clinical trials of a technique both dangerous and deeply dubious."
   The fact that she uses terms like "dangerous and deeply dubious technique" only intensify the overall ignorance of this story. Angioplasty has been performed for many, many years and the risk of death is rated at 1 in 1000 and that is for ALL types of angioplasties. The benefits from angioplasty far outweigh the 1 in 1000 risk or it would not be performed in our country. These studies and clinical trials will put to rest any doubts whether this treatment is beneficial or merely placebo effect.
   Of course Paula could not help but grab hold of the two recent studies by the Swedes and Germans that did not find any correlation between MS and CCSVI. The truth of both those studies has been out for awhile now. (maybe Paula didn't get the memo) Neither of those groups followed the Zamboni scanning protocols so to try and compare them is ridiculous. She goes on to state that the angioplasty referred to as the Liberation treatment is only used to treat relapsing remitting MS. How she ever came up with that tidbit is beyond me. Thousands of patients with ALL types of MS have been reaping the benefits of this procedure! I know many PPMS and SPMS patients who are now out of their beds and wheelchairs! There has never, ever been any treatment for PPMS or SPMS before this. There has never been any treatment that has made so many MS patients feel this good!
   So naturally, it must be placebo effect right? Placebo effect can account for a number of positive effects but cannot be given credit for bladder and bowels spasms going away, balance returning and gait improvement and eye sight improving. She also cites in her article that Alberta Health has stated that "As of today, no Canadian neurologist has found significant or sustained improvement upon examination of patients who had venous angioplasty performed, despite the fact that most returning patients report feeling better and sometimes note improvements in sensation or walking."
   I would like to know who these neurologists are that are examining the returning "liberated" patients? My neuro won’t even see me anymore since I have had the angioplasty! He is not interested! Why would they be? If this angioplasty works then it is proof positive that MS is vascular and all these years the neuros have been treating us with ineffective and often dangerous drugs. If I were a neuro I would be very worried right now.
   Another statement by Paula: "Provinces only have so many medical research dollars to spend -- and a full-fledged clinical trial of Zamboni's surgery would be both extremely expensive and ethically complicated given the inherent dangers of cranial venous angioplasty." I agree about the expense part but when you compare it dollar for dollar to the millions per year that we as patients are spending on ineffective drug therapies there is no contest! I am glad she brought up ethics! How ethical is it that medical professionals and members of MS Societies can own “stocks” in pharmaceutical companies and be paid to do research and clinical studies by these pharma companies? That is a HUGE conflict of interest! When Alberta does go ahead with trials and studies the ratio of neuros to vascular specialists should be even at the very least.
   Another profound statement by Simons: "We mustn't politicize or sentimentalize the independent grant process, allowing elected officials to decide which pet project to fund.
   Money needs to be channeled to the most promising research, research that meets every rigorous, peer-reviewed scientific standard."
   Brad Wall of Sask. And Ed Stelmach of Alberta did not independently decide to fund trials and research. Hundreds of thousands of Canadian voters have been inundating our politicians with their desire for help in this matter. Anecdotal or not, thousands of MS patients are better after the angioplasty and Stelmach and Wall listened and, thankfully, are doing their jobs!

Ginger MacQueen

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