I e-mailed the MSSC the day before yesterday, calling them up on their questionable behaviour on a number of instances. I do not expect a reply, based on the fact that I didn't receive a reply or even acknowledgment when I e-mailed them protesting the editing of my correction of Dr. Murray on their online version of the April 7 webcast.
The MSSC's resistance towards CCSVI speaks volumes. Really, they should have been the first ones to recognize the urgency of our situations and the need for immediate CCSVI testing and treatment (on compassionate grounds) along with their proposed research. In a meeting last month, a few of us MSers pleaded with the key MSSC government relations person and the research person to make such an appeal to the Government. No doubt, countless of MSers and supporters have e-mailed and phoned the MSSC pleading for the very same thing.
These two key MSSC people kept telling us that they couldn't appeal for immediate CCSVI testing & treatment even on compassionate grounds, until more research was done here. Reminding them that MSers' health will get worse in the meantime and some will die, only received the same response from them.
To read the compassionate letter from Dr. Bennett and Dr. Duncan to the Health Minister, and then to listen to the passionate and heartfelt statements from Dr. McDonald, Dr. Duncan and the MS witnesses at recent sessions was so uplifting and heart-warming. But the absence of any compassionate and heartfelt plea from key MSSC people to help the very people in whose names they hold their big positions, left me cold. Where was the MSSC's passionate plea for immediate testing and treatment on compassionate grounds, on our behalf? They weren’t the first or the last out the door for this. WHY? They are the ones employed in the name of our illness, in each of our names, and yet they were not moved by any sense of compassion for us and our conditions to make an urgent appeal on our behalf, unlike the other wonderful people who did. Why? How could this be?
Even regarding the MSSC’s competition for research grant funding. Yes, they were the first out the door, following W5’s November 2009 show and the subsequent pressure from MSers, donors and the public. Most important to note is the fact that the MSSC was the first out the door, long after the fact. If CCSVI was an “old idea” as mentioned in correspondence from MSSC-MSIF, then why was this competition not launched years ago? Why didn’t the MSSC, their medical advisors, or their research people (or rightfully, request that vascular surgeons and interventional radiologists to) look at CCSVI in MS back when the “old idea” was a “new idea” or in the many years that followed? How about in the time when CCSVI was being talked about “in MS circles”?
How tragic that even with advances in technology and resources, this avenue was never looked at again until now. Instead of all the money and time spent on marketing campaigns like “End MS”, the money and time should have been spent investigating areas (such as CCSVI) that could actually end MS - at least the progression of MS…and could end or relieve many of the devastating symptoms that MSers have had to live with.
I used to believe that all at the MSSC wanted a cure and/or any relief for us MSers and that they would never pass on any plausible opportunity that could provide answers to any part of the MS puzzle. How sad that they passed on CCSVI for so many years. If it’s plausible now, for the CEO of the MSSC to appeal to the government for millions of dollars for CCSVI research, and for the MSSC to launch a competition for research grant funding….it has been plausible for all these many years.
MSers should not have to lose more years, at a cost to their health, for the MSSC’s proposed research to be completed…we have already lost enough years, thanks to the MSSC’s delay in researching this theory. Each day takes more and more from us, we cannot afford to lose more. For some of us, life may be the next thing we lose, from complications of this horrid disease – or as the very caring and concerned Dr. McDonald sadly pointed out, from suicide.
The MSSC and some of their medical advisors have been working against us accessing CCSVI testing and treatment with their vocal and public "advice" and "recommendations" against MSers being tested and treated for CCSVI, in their efforts to supposedly protect us. What is this need to protect us based on? I cannot imagine, considering the CEO, other staff, and even some of their medical advisors are so ill-informed about CCSVI. MSers are more informed about CCSVI, and we know that the only real danger we need protection from - is the danger in not having immediate CCSVI testing and treatment.
The MSSC has offered wonderful education sessions, programs and services to help MSers try to cope with hellish symptoms of this horrid disease and try to live better lives. Do they actually think we want to continue for years with education sessions, programs and services - rather than immediately access CCSVI testing and treatment which will help rid/relieve us of hellish symptoms so that we can then actually live better lives????? Boggles the mind.
I told the MSSC that I had ceased to be a supporter of the MSSC when truth after truth began to slap me in the face. When incorrect statements were not corrected by the CEO and other key MSSC Staff present at the April 7th webcast (not even in the interest of ensuring that patients who were relying on them for accurate information received just that), I realized that MS patients were the least of the MSSC’s concerns. When my correction of Dr. Murray’s incorrect statement was edited out of the online version and his incorrect reply about Buffalo ’s study was left in, my realization was confirmed.
I wrote that I regretted that I could never again be a supporter (and neither will all my supporters) unless I see real evidence of genuine care about MS patients’ health, with the MSSC advocating for and becoming instrumental in helping MSers receive immediate CCSVI testing and treatment in Canada, first and foremost the ones in further stages of this devastating disease. And I do regret this, because I believed in them for so long. (They should interpret this as no more $$$ for them from me, my family, relatives, friends, acquaintances, colleagues…)
Finally, I let them know what they probably choose not to see…that our health is actually being further harmed by the delay in accessing CCSVI treatment; by the despair at being deprived of a basic Canadian and human right to have testing and treatment that others without MS can so freely have; by the toll this fight is taking on all of us, and by the deep sadness that we cannot even count on our own advocate agency for help.
In the Health Minister's new message for MS Awareness Month, she refers to the MSSC, inviting Canadians to learn more about them and to support their research. Note to Health Minister, the Government, and fellow Canadians: To learn the truth, ask an MSer about MS, about the MSSC, about CCSVI, about the MSSC’s stance on CCSVI…
After hearing Dr. McDonald's and Dr. Duncan's pleas, as well as reading the appeal from Dr. Bennett and Dr. Duncan...surely the Government finds the lack of such pleas from our own advocate agency questionable and very sad???