Sorry Marie Russell.

The photos that Chris has been putting up have really gotten my attention. The one below was screaming at me, "Send to MPs" So I did. And to Senators.

And I got a response from Marie Russell

Executive Assistant to  / Adjointe executif à

The Hon. / L'honorable Robert W. (Bob) Peterson

The Senate of Canada / Le Sénat du Canada

Ottawa, Ontario   K1A 0A4

It was a one liner that said, "Everything is wrong with that picture!" 

I must be getting paranoid in my old age! I thought she was talking about the content - maybe the dollar figures were wrong. So I fired off another email -"Really? Then  don't just tell me I am wrong. Tell me where and be specific" and "What is wrong  is that the disabled person in the middle represents me. I have SPMS.That, if you do not know, means they can do nothing for me with their expensive, useless drugs and no I am to wither away and die. I don't have to necessarily except that my government is refusing to allow me the only treatment in over a hundred years  that has actually helped pwMS. I do not wish MS on anyone permanently. But I sure wish I could make you live my life for one week! I suspect you would be much more interested in the gluttony of some MS neuros and some politicians and all the drug companies.

Think about it and have a nice day"

I was close to tears. Close but not crying. I learned early in life that tears are a sign of weakness and they open the door to more abuse. In any case I didn't have long to think about crying because her reply email came ding-a-linging into my inbox. 

It said, "Why do the medical doctors not support this treatment?   If I lived one week in your ‘chair’ I would be frustrated that I could not control my own treatments.  And, I would expect support from those whose salaries are in place to offer support.   Your website expresses the frustration and anger of MS sufferers."

Now I feel like a complete and utter fool! But for the life of me I cannot figure out why feel this way. But I answer her question about the doctors, "Money! There is more money in keeping us sick than in fixing us or even giving us some quality symptom relief which is what we are asking. That is what the angioplasty has offered and done for most. I am a 65 year old write off - My MS is beyond the neuros who have laid claim to it (and I might point out they all live very comfortable lives on the money they make keeping us drugged up on their expensive, useless drugs. Then when you reach SPMS stage, they toss you out. The MS Society  does nothing for us but they certainly do a lot for themselves - salaries and comfortable offices take up 3 times what they spend on research and 4 times what they spend on people with MS. They are not the only charity that works this way but they are the charity that affects my life. They all should be investigated and audited. They are busy auditing all the patients who went to the US for treatment. Since when is a lower middle class expenditure more important than the questionable goings on of government approved charities?  You know what they say in the TV crime movies, eh? Follow the money! And where charities are concerned this is excellent advice.

Money - the MS Society has MS neuros calling the shots.Take a close look at our own Dr. Mark Freedman. He was badmouthing Dr. Zamboni before he had any idea what this treatment could do. His "placebo" effects have lasted for over a year for some MSers. I want a placebo like that!!!  Listen to his video on Utube - he does not even know the definition of MS. He is an opinionated, pontificating egoist for whom words like "caring" and "altuism" are foreign words. He should not be in the position within the MS Society that he has had these past years. He should not be treating MS patients and he most assuredly should not be teaching our young people his own particular kind of $medicine$ as he does. He makes money - which he has to declare - from the drug companies. This is in my MS riddled, former paralegal mind, a conflict of interest. Cog fog, btw does not initially affect IQ. It just makes it difficult to bring the words you know to the foreground at a specific moment. Very frustrating but it does not make MSers retarded either. Dr. Freedman would have you believe that too. Having MS go venal, where he has no training and no knowledge, would render him useless and unable to live the lifestyle he presently enjoys. I have put Dr. Freedman forward as an example but he is just one of many. That is why he and his fellow MS neurologists are  not supporting this.

I would love to sign off by saying, "I rest my case" but I cannot do that. I am 65 years old and getting worse by the day. My time is limited until and unless this treatment is brought to Canada. About the picture I originally sent - if there are errors there, they are infinitesimal." And I hit send.

I am about a line into reading an email from a friend when it hits me. And that old heavy armour that I wear when stressed out wraps itself tightly around my shoulders. This woman is not doing the usual politician standard  'I know nothing, I hear nothing and I have no intentions of doing anything anyway' routine. She is agreeing with me! Now I really want to cry. Why oh why did I not adhere to my own rule of writing: leave a day or two to be sure I mean what I say before hitting the  send button?

My FB friends keep telling me not to get stressed out. It will kill me. Judy Filipowski said it to me on the phone just this morning!  Sorry guys! Sorry Judy! Sorry Marie Russell.




After this was initially posted, I sent an apology to Marie Russell because I had misinterpreted her initial email and it escalated from there. Here is her reply to my apology. The bold is my doing so you would see it right away.

No apology necessary.   If I were in your position I would be so frustrated that I think I might find it hard to smile at my own mother.   To be quite honest, I really don’t understand the Government’s reluctance to allow MS sufferers an opportunity to improve their lives.     I do feel optimistic, however, since we have been receiving a lot of correspondence from people with MS and I think the numbers alone are creating a sense of urgency.    

And yet another point of view

The letter in black are those of the MS Society. The letters in Blue (along with the air in my apartment) are mine.  Here goes:


Our vision is a bold one. Oh! Really! Well Bold means fearless and daring. The only thing you have been fearless and daring about is scamming Canadians out of their money for bogus research and threatening other doctors into silence for fear of losing their licences. Wow! Impressive -- NOT! It builds on the tremendous successes What successes? Name one! of the
last decade and from it, the strong momentum we have as we embark
upon the future.
By 2015, answers to the fundamental questions of the cause and
prevention of multiple sclerosis will be found. No you won't! It has to do with blood flow - already figured out. And there is not a set of balls among you and that is what it will take to stand up in front of the world and say you are wrong. As long as you continue to stay in your 19th century time warp, you will never, ever find a prevention. There IS a treatment and you have put up every roadblock you can to keep it out. This is not the medicine of our great Canadian doctors of the past like Wilder Penfield or Dr. Norman Bethune. In fact, it has more similarities to the methods of one very infamous Dr. Josef Mengele.  Early treatments for
repair of the nervous system Blood flow! Blood Flow! and to recover lost functions in people
with MS will be available and accessible.They already are - it's called venoplasty!  These advances will be meaningful to the quality of life of people affected by MS. I'll be long dead waiting  
Canada will be the world’s premier destination for the training and
retention of young MS researchers. Not in this millenium! Collaboration among researchers
will be strengthened and accelerated.  Sorry but it is impossible to strengthen what does not exist in the first place.


People affected by multiple sclerosis will be fully integrated in all
aspects of life and will be meaningfully engaged in shaping the work
of the Society. Does this mean you will finally view us as people? Real people?? WOW! How big of you. They will have access to client-centred, consistently
evaluated, and continuously improved programs and services that will
enable them to achieve the highest possible quality of life while living
with the daily challenges that MS presents. Any chance you could tell me why this is not offered now? You have taken in millions over the last half decade and we still have to wait until 2015? You are insane!!


Canadians and their governments at all levels will be aware and
responsive in advancing the priorities and improving the lives of those
affected by multiple sclerosis. And they are waiting for what??
The MS Society will be a transparent and accountable organization. For the first time ever! That will be a nice change!
Through collaboration and with the commitment of volunteers,  (Collaboration -interesting choice of words! And this is the second time you have used it! A psychologist would find that telling, I think! One of the definitions is so fitting in my opinion. It's the one that goes "Act of cooperating traitorously with an enemy that is occupying your country". Neuros maybe?)

employees and partners, we will successfully implement the strategic
directions that we have developed together. How about sharing them now in 2011?
Join us to end MS. Be a part of Momentum 2015! I don't think so. I will be dead by then and hopefully so will that MS Society


The words in black above are from http://mssociety.ca/en/pdf/Momentum2015_leaflet.pdf. The words in blue are mine and are my opinion .

Go Ahead! Ask Me If I Am Angry!

February 25, 2011

I was going to email this to the Minister of Health. Then I realized that that is a horrific waste of pixels because she either deletes my letters or she files them in File 19 (aka the Garbage). When she does respond, she waits until she gets 8 or 10 letters and sends one standard form letter (You probably have one in your email if you have ever written her) and that letter does not address anything I have said. So if you feel she should see this, you tell her.

Regarding the Study on CCSVI in MS at The Ottawa Hospital,  http://www.nationalmssociety.org/research/intriguing-leads-on-the-horizon/ccsvi/ccsvi-study-by-torres-team/index.aspx 

It is, in my opinion, flawed even before it begins.

The MS Society, on their site say, “A total of 100 participants including participants with MS and healthy individuals. Participants will be recruited through The Ottawa Hospital MS Clinic Research Unit. Recruitment number is approximate and is subject to change.”

This is indeed amazing. If we do not know what causes MS and the MS Society say that on their site –“While the cause (etiology) of MS is still not known” and if a person can live with MS for more than 20 years without ever being diagnosed and, Oh My God! Those diagnoses are made in part by anecdotal data collected from and supplied by the patient who is rarely a scientist, how on earth can Dr. Torres and his colleagues know whether the people involved with his study have MS or not? However do they determine a “healthy” participant from an affected one? Perhaps 20 years down the road, based on anecdotal data about things like a strange one time bout with double vision that ophthalmologists cannot explain, they will indeed be told they have MS and have had it for decades. Diagnosing MS, for those not in the know, is not as easy as, say Lyme Disease, which can be discovered with a blood test.

Lyme Disease brings to mind another question. The symptoms of Lyme Disease and MS are very often very similar. In fact, many people who have Lyme Disease go around thinking they have MS – for decades! Why? Good Question! But there is a reason – sort of. Canadian doctors, for the most part, do not test for Lyme Disease and when they do, they usually use a test called the Canadian Elisa. They call it the gold standard. It would be more accurate to call it the Fools Gold Standard because it misses 99% of the bacteria forms that cause Lyme Disease. The more accurate test is hard to find in Canada – The Western Blot. ** To me, and I have to admit I am not a doctor so this is just a opinion, we should all be tested first and properly with the Western Blot for Lyme Disease before being labeled with MS. Lyme Disease responds pretty well to antibiotics and can be put behind the patient very quickly if they in fact have it. Presently, the people with Lyme Disease are walking around thinking they have MS. Their doctors are treating them like they have MS. Again for those not in the know, that may very well mean being given drugs such as tysabri (it has killed people but still they prescribe it!) or one of the C.R.A.B. drugs. Some of those drugs cost $3,000.00 or more per patient per month. Gee whiz Guys! It does not take a rocket scientist to see there is no logic in their methods. You eliminate the possibility of the common cold before you diagnose pneumonia. Similarly, you eliminate other possibilities like Lyme before you diagnose and sentence a person to hell with MS.

The ‘hell of MS’ is more than just the symptoms. Lord knows they are bad enough. MS truly is a label, a scarlet letter on your forehead. If my kidney fails and I need dialysis, I will probably be given vascular angioplasty more accurately called  venoplasty. If I happen to believe that Dr. Zamboni is right and that a good number of the people diagnosed with MS are in fact not suffering from MS but have a vascular problem called CCSVI (chronic cerebro-spinal venous insufficiency) I cannot get the treatment. The reason? I have MS on my file. It is not safe?? Then why are they doing it for everyone else who needs it?? The Scarlet Letters are written all over my file and the people trained to do this have been threatened with loss of license if they even try. In fact, just about anything I, an MS patient, complain about is ignored – I have MS so it has to be the culprit??  I can’t suffer the same things other people do?? Because I have MS?? Not even a little bit logical.

It is also assumed that I am stupid. I get spoken down to the same way that white plantation owners spoke to their black slaves. It has since been very well established, on this Continent anyway, that that type of behaviour is discrimination, based on attitude, not facts. It ticks me off even more because of all the people I have met with MS, there is not one person with a lower than average IQ and indeed many who are above average. My IQ tested at 129 for most of my life. Go on any CCSVI/MS chat line or blog and you will meet very intelligent people, many are professionals like Dr.Bill Code. That attitude may have worked in the past but the days of it carrying on this way are numbered. We are no longer isolated. It does not take month or weeks or days or hours to get news anymore. It takes a fraction of a fraction of a second.

Those “experts” the Health Ministry uses re MS are “experts” at what?? It sure a hell is not MS. It is not CCSVI. It is not Lyme Disease.  No one – not even a spouse or parent – really knows what MS fatigue is because you really have to experience it. The experts are the MSers. The best even a spouse or a parent can do is empathize. Empathize. Now that is  a good word for all you folks on Parliament Hill to learn. Even better – try practicing it. Regardless of what Ministry you are in.

Have you ever watched the news where CCSVI is being talked about? One Ottawa MS neurosurgeon suggested on National TV that they needed to do blind studies to be sure the improvements people had were not a placebo effect. Guess he missed the day Placebos were discussed in med class. A placebo is “An innocuous or inert medication; given as a pacifier or to the control group in experiments on the efficacy of a drug”. Vascular angioplasty is a procedure, not a drug. New procedures are performed all the time. Remember heart transplants? Do you really think Dr. Barnard cut a second patient up and pretended to transplant a heart so he could compare the two? Or the first patient to ever have a severed limb put back on? Did they cut a patients limb off and pretend to reattach it to see if there was a placebo effect?  This guy is too unreal! But I see he is still on the list of doctors at the Ottawa General and I see he is still on the list of doctors at the MS Society.

I was just looking at the MS page again. They plan to spend $102, 866 over 2 years. The MS Society spends more than that on their big salaries and on office equipment every year. How bloody big of them! NOT!! If you are thinking that by giving to the MS Society you are helping us poor MSer, think again. They do not help us. They do not diagnose us properly. They stuff us full of drugs that cost big time and do nothing that they can prove. They consider anyone who thinks they may be mistaken about the autoimmune hypothesis (a hypothesis is only a theory) is a cultist. Mostly they make big bucks at our expense and yours. So take my advice and stop giving to them. If you have money to give away, give it to the Salvation Army who’s CEO makes a just above poverty line income. Give it to someone trying to get a real Lyme disease test. Give it to one of the organizations that have sprung up to help people get vascular angioplasty in the USA. Give it to the Angioplasty For All group who are putting together a legal case to help us get Angioplasty allowed in Canada. There have been more than 12,000 angioplasty procedures carried out worldwide. Not all have been the magical cure but we all know it is not a magical cure. It is a viable treatment though for those who should have been diagnosed with CCSVI and not MS. You can read about them on the Internet; you can watch their before and after videos at UTube. Being mobile a year after the procedure without the use of a wheelchair is no placebo effect.

Something I learned as a little kid – If you make a mistake, own up to it. You still might get a spanking but chances are you won’t. Chances are, also, that you will be given an opportunity to fix the wrong or at least try. It might have something to do with when I grew up – the late 40s and early 50s. My Father was a war vet; my Mother opened the house to war refugees. They all talked about the war and good old Adolf Hitler and Benito Mussolini, When I was older the war became a big interest of mine – a chance to make sense of the stuff I heard but they didn’t think I paid any attention to. I learned a lot but mostly I learned that control and greed and hurting others leads to infamy instead of fame. It leads to horrid things happening to you. At the end of  WWII that meant being hung by your feet and paraded through the capital or dying in a bunker or spending the next 60 years being hunted down and hung or imprisoned. But this is Canada so I do not expect anything that desperate but I do expect that those who are keeping us sick when wellness is available; those taking our money for themselves and giving pain and suffering in return and those who are bullying us into capitulating are going to get theirs in the end.

Ms Aglukkaq, you were voted into office by your people to help your people. What have you done for them? As Minister of Health for Canada, you are expected by the Canadian people to do positive things towards helping the sick and disabled and to help the healthy stay healthy. Measuring the height of the lettering on cigarette packages is not impressive. Giving us 100 doctors for the outlying areas in a country the size of this one is not impressive. Not having a plan to keep them there by way of contract etc. is even less impressive. Listening to “experts” who are experts at nothing useful to MS patients is the least impressive thing you have done. I calls ‘em as I sees ‘em and his is how I see you and your Ministry. That’s my opinion. Now exactly what will you do to change my thinking? What are you going to do to stop this study and the waste of more Canadian taxpayer's money? My suggestion:1. Upgrade the testing for Lyme Disease and 2. Lift the ban on venoplasty for MS patients and 3. Fire the “panel of experts” you use on MS related matters – they are not experts in MS.

 Sincerely

Karen Copeland

MS Dragonslayer

**  From Terri - Actually , that lyme  test sucks to, ( Western blot ) the most accurate is by many this -

IgeneX, Inc.
Palo Alto, CA
800-832-3200, www.igenex.com
PCR test: $55, dead or alive. Can test for 5 things @ $55/test. MY choice
Turn-around time: 10 to 12 business days; ziplock bag.

Some light reading!  http://www.cbc.ca/news/canada/story/2011/02/24/lyme-disease.html

The Pressure is on!

February 21, 2011

The Pressure is on and the Steel is beginning to Bend!

Look what I found when I opened my email today! I think I now know how Egyptians felt a few days before President Hosni Mubarak gave up the fight - Knowing it wasn't over yet but seeing the sunrise becoming  visible on the horizon! My thanks to Wayne Feaver for sharing this with us.

Wayne Feaver21 February 2011 at 13:46

Pressure on province to allow MS treatment



Pressure is increasing for the Ontario government to allow a procedure to treat multiple sclerosis.

Four Chatham-Kent residents, who have each spent thousands of dollars and traveled abroad for the procedure, met with Chatham-Kent's mayor Friday.

All four said their health has improved immensely after having the costly out-of-country procedure, which involves widening a vein in the neck or chest.

Sheila Clements, chair of the local MS chapter, said she is "very impressed'' with the results in those who have had the procedure.

"It should be available here at home,'' she said. "And it is for people that don't have MS.'' Sandra Kniffen, 57, spent nearly $15,000 to travel to India for the treatment in August.

"I can now walk without a cane,'' she said. "I'm less fatigued and I have good balance. Also, both my hands work. It was worth the trip for the treatment.''

Paula Brown, 50, of Chatham, took a second mortgage out on her home to pay the $18,000 for her procedure in Mexico.
Like Kniffen, she has experienced major improvement in her health.

"I don't have the fatigue that I had before the procedure,'' she said. "I used to have to lay down flat during the day. Now I hardly sit down and my balance has improved 70 per cent.''
She said the weakness on her left side has also disappeared.
Wendy Primeau, 46, spent $10,000 for the procedure in India in July. "Before I got around in a wheelchair,'' she said. "Now I use a walker.''

She said she is no longer fatigued and feels bright. "It's too bad we have to travel half way around the world for treatment,'' she said. "And most MS patients couldn't afford it to begin with.''

Rick Francis, 50, spent $12,000 for his procedure in Poland in July.

"My balance is much better and I have the use of my right hand and arm,'' he said.

Francis said his quality of life has improved immensely.
"My fatigue is fixed and my heat intolerance is fixed,'' he said.
All four MS patients said there is no reason why the procedure couldn't be offered at home.

"It's all about politics and dollars,'' said Clements. "Doctors can and do perform the procedure here at home provided their patients don't have MS.''

Mayor Randy Hope said he plans to arrange a meeting with the province's health minister at Queen's Park to push for a veenoplasty procedure that is not available in the province or Canada.

"It doesn't make sense that people have to borrow money and mortgage their homes to get treated out-of- country.''

** Just so we do not end up being called plagiarizers, Wayne tells me he did not write this and I didn't either. My best effort to find its origin - Chatham Daily News (I think).

Another Verbal Go-round with the MS Society of Canada

February 9, 2011

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.__

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 - http://mssociety.ca/en/default.htm.  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.