Way back in May 2010 I wrote the Min of Health concerning what was happening in the CCSVI / MS world and to update her on what had happened since a previous letter in December 2009. I never received a reply, so when the CIHR /MS Society recommended to her that funding for CCSVI treatment be deferred, it spurred me to write another letter - I have to admit I took a lot of the content for that letter from other authors including Chris Alkenbrack. My Sept 6/2010 letter was finally answered and arrived in my mail today. It states:
Thank you for your further correspondence concerning CCSVI and MS.
I recognize the toll MS takes and the significant challenges faced by patients, their families and friends. I have been closely following reports surrounding Dr Paulo Zamboni's proposal for a new treatment for MS based on the hypothesis that the disease may be linked to CCSVI.
My provincial and territorial counterparts and I have agreed that fully funded therapeutic clinical trials on Dr Zamboni's angioplasty procedure will happen in Canada if and when the research supports this action.
The CIHR, in partnership with the MS Society, has established a Scientific Expert Working Group to review evidence and advise on a clinical trial. Several diagnostic trials are now under way to establish whether there is a link between CCSVI and MS, and to instruct the development of a possible treatment trial. We are seeking clarity from these studies about definition and nature of venous blockages, and a reliable, standardized diagnostic approach. Additional information is available at http://www.cihr-irsc.gc.ca. We hope to mhave prelimanary results for these studies in a matter of months.
I am committed to doing everything I can to accelerate progress in this area. Thank you foir writing.
Sincerely, Leona Aglukkaq.
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So that's what I got back from several pages of information on the progress of CCSVI treatment, the lack of any unbiased parties in the CIHR / MS Society joint advisory panel. So I thought I needed to respond so the following is what will be going to Ottawa:
Dear Minister, re MS and CCSVI
I have received your letter of November 29/2010: as much as I acknowledge and appreciate that you have a very large role in the Governmernt of Canada, I have to state that your reply has ignored the many issues raised in my previous two letters and I find this a sad state of affairs from anyone in so called "public service".
Let me address your letter of Novdember 29:
- "I recognize the toll MS takes" Minister, this is verbage that has absolutely no foundation, and yet it is used so often by elected officials, medical personnel, MS Society personnel. No one knows the toll MS takes unless they have personal experience, and I would respectfully ask that you, as Minister of Health stop using this expression because I do not believe you have any idea of the "toll MS takes".
- "Dr Paulo Zamboni's proposal for a new treatment for MS". Minister, the Zamboni Hypothesis is way passed being a proposal. Unless you have been living in a vacuum, unless all of your advisory staff have taken the last 12 months off, you should be fully aware that the Zamboni Hypothesis is in "full swing" around the World. Treatment centres are operating in Poland, Bulgaria, Egypt, Germany, Belgium, India, The USA, Mexico, Costa Rica and even the United Kingdom. We in Canada are still at the ..."if and when research supports this action"... stage. One has to wonder and ask WHY ?????
- "A Scientific Expert Working Group": made of people with no training, no experience and certainly no enthusiasm for this potentially breakthrough treatment.
- "Several diagnostic trials are now under way". these trials will seek to establish a link between CCSVa and MS - again WHY ? As much as I understand the research that is still needed into this whole issue, what I do not understand is that as CCSVI has been recognized internationally as an undesirable congenital malformation, then why it should not be treated as such ? Additionally, as you undoubtedly have had pointed out to you over and over again, there is now a huge amount of (albeit) anecdotal evidence which more than fully "establishes a link" between CCSVI and MS. Yes we do need to define the nature of venous abnormalities and thus standardize the approach, but to reinvent the wheel is simply wasting money and time, the latter of which is in short supply if you suffer from MS.
- "We hope to have preliminary results for these studies in a matter of months": the studies being undertaken with MS Society funding (money that was donated to them in good faith by Canadians who really believed the MS Society wants to "endMS") are scheduled to run through to June 2012, that's not really a matter of months is it ? The studies are being run by people who are not trained in any of the Zamboni Protocols, and in most case have no Cardio-Vascular/Interventional training or experience. Just like recent studies that have come out suggesting there is no correlation between MS and CCSVI, I believe that the current "diagnostic trials" here in Canada will have the same results, because the people involved will not know what they are doing !!!!! Additionally the biased opinions and ties to pharmaceutical corporations (which bring them millions of dollars for research) of the principals behind these trials does not promise honesty and truthfulness in the end results.
Your final sentence in the Nov 29 letter is somewhat offensive:..."I am committed to doing everything I can to accelerate progress in this area"... If you are indeed "committed" then you would have read my previous letters and considered all the points raised (and I believe I am not the only person who has written you with similar concerns for your consideration): if you really want to "accelerate progress" on this issue, then you would have over-ruled the CIHR / MS Society recommendations to you regarding the research of CCSVI/MS, indeed you would have supported the Sask. Provincial Government and put out funds to begin "real" trials, trials into the treatment of CCSVI and its ongoing impact on the MS disease. Those are the things you would have done if you are indeed really "committed to" and "accelerating progress" in this area.
Minister, ACTIONS SPEAK LOUDER THAN WORDS - please rethink your words and then actually create some actions that will show you "recognize the toll MS takes", that "you are committed to doing everything you can to accelerate progress in this area". As of this moment in time your inaction, your lack of comprehension of this treatment and its positive effects, just shows that you do not recognize the toll of MS and that you are nowhere near being committed enough to the plight of approximately 75,000 Canadians suffering this progressive and debilitating disease.
Might I expect an answer sometime in the near future ? Sincerely.
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Don't know if I'll hear anything back from this letter but it felt good to respond to the political drivel that our politicians give us.