Last week I endured yet another flare-up. If I ever wished for a fast death it was then. So I wrote the MS Society. Well I tried to but the hands would not cooperate and the concentration was out to lunch so I ended up copying and pasting a blurb from their site about drugs and told them I thought they were disgusting. That letter took me close to two hours to put together and two days to get it corrected and sent. Ask me if I was frustrated!
Today I got an answer. Today my body is working better too so today I wrote them a much longer letter. Took the same amount of time. It is all laid out below.
Me to the MS Society of Canada
Six drug therapies are approved in Canada for the treatment of some forms of multiple sclerosis (MS). Five of these medications — Avonex®, Betaseron®, Extavia®, Copaxone® and Rebif® — are immune modulating medications. The sixth — Tysabri® — is a selective adhesion molecule inhibitor. In large clinical trials, all of these drugs have been found to have a direct influence on altering the course of MS. They are sometimes referred to collectively as disease-modifying therapies.
One of these days, you are going to regret putting lies like this up on the Internet. In my opinion,you aught to be charged in criminal court for fraud and negligence. I live for the day.
Of course, you could start writing truth. This is disgusting!
Karen Copeland
MS Society of Canada's Response
Thank you for your email.
Please provide us with your full mailing address so that I can forward your inquiry to the appropriate person.
Sincerely,
Celine
Celine Weeling Lee| Receptionist
My Response
Celine
You are a receptionist. As such your job is to pass messages on to your bosses. You can put a copy of this message on everyone's desk at the MS Society. They, if they so chose, can respond by email.
Pushing drugs on the internet should be illegal if it isn't. Making money off of other people's misfortunes is usually called a scam. And it is disgusting! There is a procedure that actually helps people with MS but the MS Society continues to bury its head in the sand in that regard, continues to deny us access to this procedure and continues to push drugs that have little effect on the condition and in fact, have proved dangerous to some. There is nothing ethical in this, in my opinion. There is nothing charitable in this in my opinion.There is nothing intelligent in this, in my opinion.
I have had two flareups in two weeks. MS, it appears, is going to get me. And it is going to get me because the MS Society, which is supposed to help people like me, is only helping themselves. Eventually, the MS Society will have to change its position drastically and accept vascular angioplasty as a viable treatment or it is going to come crashing down in a ball of fire. Either way, I hope it happens before MS has totally destroyed me and the 75,000 other Canadians who suffer from it.
Bringing a bad professional down is very difficult. But it is not unheard of. You may want to read a bit about Ontario pathologist Charles Smith. That, by the way is not a threat. I am too broke to take you on in any other way but by letters like this one. But it is a warning of what can happen to those who get too cocky.It is a warning to those who allow their little bit of power control their lives instead of them controlling their little bit of power.
I do not know specifically where your research efforts are presently, legitimately going. If it is stem cell research, I am a firm believer that this research can help many (MSers and others), including those for whom Vascular angioplasty does not work. No one has called on researchers in MS to stop that research. They have only asked that you allow those of us who can be helped with angioplasty to have access to that help.
They say that "Pride Goeth Before a Fall". Do not let your pride be your downfall. Most especially, do not let your pride be my downfall.
Sincerely,
Karen Copeland
cc: MSdragonslayer blog spot.__
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