Today, I went on Facebook and the first thing I saw was this
http://www.thestar.com/news/canada/article/946532--ms-patients-to-get-more-help-at-home
I am hoping MSers and friends and relatives will join a letter campaign to Ms. Matthews. Her email address is "Deb Matthews" <ccu.moh@ontario.ca>
Tell her what you think. I did.and here is a copy
Dear Ms. Matthews
Today's news about more aftercare at home is great! Well, it was until the last paragraph where they note who is on your "expert" Advisory Board.
The MS Society and their neuros are NOT experts in MS. That is not an opinion. That is a fact!
So far, people who had Lyme Disease have been misdiagnosed and made to suffer not only the disease long term but the useless and often dangerous treatments these neuros have prescribed. And most of those drugs have not even passed the safety test before they are on the market. We need you to address the Lyme Disease connection and do something forward thinking about the test for it. It is called the Canadian Gold Standard but it should be called the Canadian Fool's Gold Standard. If we want to check ourselves out for Lyme - Gee Whiz! We have to go south of the border. I know that should have been corrected before you got the Ministry but it wasn't. That is not a good excuse for you to carry on with your predecessors mistakes.
Secondly, people diagnosed with MS have left the country to be treated for CCSVI. Judging by the number of people who have had seriously good results, it is my guess that they also, were misdiagnosed. It is for damned sure the neuros never told us about the possibility of CCSVI. In fact, we have the MS Society's Dr. Freedman on video from a tv interview calling CCSVI a hoax, snake oil. Oh, yeah, and offering to do placebo testing - placebo results are something done for drugs, not for medical procedures. And this medical procedure - I have to wonder what kind of med school these guys went to to come up with statements like, "it is dangerous"? My next door neighbour gets venoplasty quite often - she has kidney disease. If it is safe for her and all those kidney patients, why is it so unsafe for MSers? The treatment of MSers in this country and in this province is a fraction of a degree better than that of Dr. Josef Rudolf Mengele - he of Nazi Germany infamy.(That by the way, is not intended as a compliment!) Off the top of my head -
He took vulnerable people and experimented on them. MS neuros take vulnerable people and experiment on them.
He killed people with his experiments. MS neuros have killed people with their experiments.
He lived high on the hog as long as the Nazis were in power. MS neuros are living high on the hog under Your leadership in this Province and under Leona's cross country.
To add insult to injury, having spend personal money to get treatment that should be available in this First World Country, MSers return home and are denied post procedure care. Now you are offering to fix that but you do not seem able to leave the insult out. Putting the same neuros on your "expert" panel is just a little more insult, rubbing salt in the wound. These dudes have been quite verbal about CCSVI and from a negative stance. This is not going to cut the mustard for most MSers. Looks like your logic flew south for the winter!!
You do not need neuro experts - if they knew anything about MS, we would not be in this situation in the first place. They have no idea what causes it, they have no idea how to help get rid of it,; they do not do what should be first step and that is to eliminate other possible conditions like lyme disease and they do not. They do not even seem to know what it is? Autoimmune is a word they coined to cover up their ignorance and then to make money. What you need for experts are some MS patients, an expert on Lyme Disease and the vascular people who are working in fact or at least following the lead of those in other countries. You have Dr. Sandy MacDonald right there in Toronto. Why did you leave him out? He has more knowledge about CCSVI/MS in his pinkie than all the MS neuros put together have in their entire bodies.
From where you sit - the only thing you personally need is a little logic. A little maternal instinct wouldn't hurt either. And the "real MS experts" - the patients.
From where I sit, it sure looks like you and Leona are both sleeping with the enemy, if you will pardon that oft used expression. Canadians used to brag about our Medical system. Now we are more and more coming to the opinion that everyone concerned is on the take from the Big Pharma. Are you on the take? That is not a very pleasant opinion to harbour. I am not the only one with that opinion. It is a political killer. But our opinion can be changed. Of course it would require some logic and some positive action on your part.
A tyrannical government is a tyrannical whether it is voted in or just takes it.
Those are my sincere opinions.
Karen Copeland
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Shame on Canada!
http://its-time-to-slay-the-ms-dragons.blogspot.com/
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