Sunday, November 14, 2010

Clear, Concise Information from the MS Society of Canada??????????????

November 14, 2010

Did you ever wonder what happens to the money that you donate to the MS Society? Well, one of the things they do is offer a web site -  I surf on over there periodically in the hopes of getting enlightened. The other day I was looking to see what causes MS. This site, I believe, is supposedly written for a layman. Actually, a lot of it is a good example of how to say nothing and say it  impressively. And how to take a wild guess, surround the guess part (usually contains the word may or could) with big, often technical or scientific words and phrases and leave the reader thinking he has read a really definitive statement. Take a look:-

What causes MS?

According to the MS Society:

While the exact cause of MS is not known, current research increasingly points to a complex interplay of environmental and possibly genetic risk factors. Together these two factors may influence a risk for developing MS given a prescribed set of conditions which are yet to be discovered. MS is NOT contagious, and is NOT inherited, although the genetic influence on susceptibility is a major thrust of research supported by the MS Society of Canada and its Scientific Research Foundation.

Are you confused? Do you remember how to précis from your days of taking high school English Composition? Let me précis this for you,

What causes MS? The Precis

Don’t know. It’s not contagious and it looks like it could be caused by environmental factors and it’s not inherited unless it is genetic. (Huhhh!!) That is what the MS Society will research.

Perhaps the MS Society should have quit while they were ahead with the one statement that is basically true - the exact cause of MS is not known. And this one is a pretty safe bet too - MS is NOT contagious. Ok so
now you can kiss me, have sex with me and or sneeze all over me and I won’t catch your MS. The rest of this paragraph –
“ and (MS) is NOT inherited, although the genetic influence on susceptibility is a major thrust of research supported by the MS Society of Canada and its Scientific Research Foundation.”
 Means exactly what?? Tells me absolutely nothing about the cause which is, if I read the headline correctly, what this is supposed to be addressing. It is a lot of double talk and drivel. Perhaps if we read it out loud in a calm, soothing voice, it will hypnotize us. LOL

I can’t speak for other families but here is how MS affects my family. There is no MS on my Mothers side of the family. On my Father’s side, one of his 7 siblings had it and it only reared it’s ugly head as far as anyone knows in his later years. The rest of them and their numerous children are MS free except me. Sorry but genetics (as in inherited) does not just leap off the page at me. A very quick, unofficial poll of my neighbours tells me that the average person sees the word "genetic" and thinks inherited'  first and foremost and often, only.

Environmental factors – maybe I’ll buy that. There is so much crud in the food we eat, the water we drink and the air we breathe, it will probably turn out to be the cause of a lot of problems. Perhaps that crud messed up some element of my DNA or maybe it messed up something altogether unrelated. Maybe
that DDT they used to spray all over hell’s half acre affected the way my veins and arteries developed or maybe they developed just fine but it messed up the way they work. Maybe that is just a side issue and it is really that I do not produce enough or maybe I produce too much of some hormone. But I am not a
scientist. So what do I know?? Judging by the MS Society’s statement, I know as much as they do. And I can make as many good guesses with my grade 12, and college certificate education as they do with their years of medical school and neurology and all those other ‘ologies’ they have. Their statement is a really
vague one so back to the drawing board with the causes and the statement.

I suppose one could be very lucky. Pick a disease or condition. Put the possible causes on a board and throw a dart and hit the right guess and indeed find a cure. But the odds of winning the lottery are probably better. Kind of looks like the MS Society did just that though and then developed tunnel vision about
their pick.

Perhaps the better route at this point in time is to look at some of the symptoms. Find an answer to them. Like Dr. Zamboni has done. I have been reading, like so many other MSers, the success stories, partial success
stories and the “It was a dud’ stories coming out of the rush to get the
Liberation Treatment. I have watched the video of one young man who spent years unable to walk, climbing stairs – months after the treatment. The MS Society would have you believe that this is just a Placebo effect – wanting to be better so badly you fool yourself into being better. Hmmm!!! Sounds like hypochondria more than a placebo effect. Of course, if it is hypochondria, there are 76,000 Canadian people give
or take and God only knows how many there are in the other affected countries, who are doing a fabulous job of pretending to have MS. Or maybe it means that there are doctors who have misdiagnosed 76,000 hypochondriacs with MS, Oh Yeah! I forgot, the lesions. Well maybe we are so clever we can think ‘lesions’ so hard that they will magically show up on an MRI. Here’s a novel thought – This guy in the video really does have MS; the liberation treatment really did help. One of the symptoms is CCSVI. When the
symptom was treated it went away.

Perhaps those who only had partial results or no results, have other undetected veins that are still blocked or maybe for them a different symptom is dominant or maybe the doctors and technicians doing it just need more experience or better training. Maybe they were misdiagnosed. Maybe MS is not the kind of condition that will ever have a ‘One Size Fits All’ solution.

Maybe the research the MS Society of Canada has been working on is, in fact, useful. Maybe it will become more obvious where and when it is useful if the CCSVI part of the condition is not there to worry about. Maybe the members of the Society who are reacting rather than acting on Dr. Zamboni’s findings, can still be the heros they would like to be.

Or maybe they don’t give a continental damn and just want the flow of cash from drug companies to keep coming so they can support a lifestyle very few MSers will ever be able to have even if they can afford it. My gut tells me it is a money thing. My heart wants to believe that, as Canadians, they are somehow above that
kind of sleazy behaviour.

Ok This started out as a critique of one paragraph from the Canadian MS Society Page. It has made me appreciate Miss Stanton, one of my High School English teachers and Don Stewart, another of my English teachers. They would rip up one side of me and down the other if I had ever written such a vague, say nothing statement and palmed it off as information.

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