Letters to and from the Prime Minister's Office

Recently, a number of people took part in a Blitz. Those who have already had the treatment sent a letter with a list of the improvements they have experienced. Those who are still untreated, sent a list of their symptoms. I am in the latter group. Here is my list in letter form. The subject line said,

What to Look forward to should it happen to you or one of yours

August 11, 2011

MY SYMPTOMS (by Karen Copeland )

My name is Karen Copeland.  I am a Canadian citizen diagnosed with Multiple Sclerosis. Below is a list of my symptoms and a brief comment on how they affect my daily life.

1. Fatigue - constant and extreme. Often need a nap after walking from living room to kitchen.
2. Stamina – non-existant. I used to walk 7km to and again from work and was never exhausted.  Six(6) feet has put me out for hours at a time on good days and for several days on bad days.
3. Legs burn, feet swell constantly. Makes walking difficult, sleeping difficult, just being alive from minute to minute very unpleasant and painful.
4. Bladder does not work anymore making self catheterizing several times a day, mandatory and the incidents of bladder infection much more frequent.
5. Bowels – Messy, unpleasant and embarrassing.
6. Right arm and leg only function at about 50%. Cannot raise my right arm over waist high for more than a few seconds; right leg drags when walking and cannot do stairs at all anymore. Both feel numb. Fingers cannot feel to hold things or do things like buttons and zippers.
7. Upper torso – as the day progresses, so does the feeling of weight  - it is like wearing a lead shirt.
8. Walking –short in house with aid of walker. Staying upright for more than 10 minutes, ends in my body folding in two at the waist.
9. Brain fog – it gets harder to bring words I know and want to say from brain to vocal chords. Extremely frustrating for an active mind.
10. Concentration – a thing of the past. Also very frustrating!
11. My independence has been taken away. If I fall, I stay down until help comes. If my house needs tidying, someone else has to do it. A letter like this which should take me 20 minutes, takes all day or even several days depending on the fatigue.
12. Have driven from coast to coast many times. Had a clean drivers license all that time. Have been unable to trust myself to drive for more than 10 years, so I don’t. Brain fog does not mean loss of intelligence as many appear to think.

My symptoms are getting worse. An extrovert all my life;  now an unwilling introvert. I have seen angioplasty has many of my friends walking and some are even working again! I could go back to being responsible for myself as I was. I paid a lot of income tax in my time, partly so that this type of hang up would not happen.

I, like all Canadians, deserve the opportunity to have not only their arteries, but also their veins unobstructed, and their blood flowing freely. 

Please support Senate Bill S-204. 

Sincerely

Karen Copeland

CC: Every Canadian MP

       Every Canadian Senator

Wonder of wonders, I got a response from the P.M.'s Office. 

Dear Ms. Copeland:

Thank you for writing to the Prime Minister. In your e-mail, you raised an issue that falls within the portfolio of the Honourable Leona Aglukkaq, Minister of Health.

Please be assured that your comments have been carefully noted.  I have taken the liberty of forwarding your e-mail to Minister Aglukkaq. I am certain that the Minister will wish to give your views every consideration.

For more information on the Government's initiatives, you may wish to visit the Prime Minister's Web site, at www.pm.gc.ca.

Once again, thank you for taking the time to write.

M.F. Bustos
Manager/Gestionnaire
Executive Correspondence Services
for the Prime Minister's Office
Services de la correspondance
de la haute direction
pour le Cabinet du Premier ministre

A letter like this looks like Buck Passing 101 material. It has to be answered. If you get a similar letter, please respond. Saying nothing is usually interpreted as acquiescence. Please do not allow this to be interpretted that way! Here is my response sent out today.

Dear Prime Minister and M.F.Bustos,

I sent the letter to the Prime Minister because the Honourable Leona Aglukkaq has been less than honourable in her dealings with patients of MS. In fact, it is difficult to find any health issue in Canada that she has addressed with any aplomb at all. Her interviews on the subject of MS/CCSVI on television have been a series of stuttered avoidances of any issue put to her. She parrots her 'experts'! If she did her homework, she would see fairly quickly, that her "experts" are in fact, experts at nothing. Dr. Freedman, one of her experts, does not even know the correct definition of 'Multiple Sclerosis'. He refers to it on a youtube video as having to do with the number of 'episodes' a patient has which is not what MS means at all. Not only does she parrot them and their errors, she clearly is uncomfortable doing it as she stammers and repeats pre-written info even when it does not address the question put to her. If anyone seriously wanted to learn about the people in her riding, they would go to the people in her riding. They would not ask fishermen from Newfoundland for instance. Yet she has not spoken to any MSer that I can find. She has gone to fishermen - for that's what MS neurologists are - fisherman. They have been fishing around a hypothesis that has not produced one sensible catch for over 50 years.

Perhaps the Honourable Leona Aglukkaq thinks we are all so badly affected by our condition that we have nothing intelligent to say? That would be another mistake on her part! Let me correct you and her on that point. There are a good many intelligent, even brilliant, people suffering from MS. And we are not impressed with her, her adopted views on MS nor the agency from whom she has adopted her views.

It has been suggested to the Prime Minister, indeed to every Member of Parliament regardless of political stripe, that the neuros so fervently clung to by the Minister of Health, are not in their particular line of medicine to help anyone. It does not take a university degree to see that. It just takes a modicum of observation.They are in it for the money and are the gophers of the Pharmaceutical industry. Any area of medicine that prescribes drugs of questionable value at prices of $1,300.00 to $4,000.00 per month per patient needs to be investigated. I do believe that we have here in Canada, a very good unit at the R.C.M.P. who investigate fraud, conflict of interest and other white collar crimes.This issue begs their attention.

The treatment we are going out of country to get is not new in Canadian Medicine. It has been around for decades and is done daily in Canadian hospitals for all who need it except people diagnosed as having Multiple Sclerosis. This is discrimination based on medical disability. Not a Canadian attitude of the past. Please do not continue to keep that disgraceful attitude alive. A quick look at history will tell you quickly, that this attitude inevitably comes back and bites and it usually bites hard.

Do not make us beg for fair and useful treatment. Making people beg is beneath contempt.

Here are two links on the subjects herein.

http://www.youtube.com/watch?v=NhKci3UzSGE

http://www.theamericanscholar.org/flacking-for-big-pharma/?key=50601046

Sincerely

Karen Copeland

If you have been diagnosed with MS and feel that CCSVI is a part of it or all of it, and if you didn't join the Blitz, it is not too late. Send your symptoms or your improvements if you have been treated for CCSVI to the PM, and the MPs and MPPs. If you already have and have received a letter back like the one sent to me, respond to it. Do not leave them thinking you are ok with their buck passing and poor handling of our problems getting proper medical help. Speak up and speak up as loudly as you can.

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 .

Scooter Poster

Q. How Does The Canadian Government  Defeat the “No Death Penalty Law?

1. They let sick people die by refusing them available treatment.

Approximately 75,000 Canadians with MS are being allowed to die without treatment.

Venoplasty is a viable treatment against the symptoms. It is used in Canada everyday – just not on MS Patients or people with CCSVI. Their drugs often kill us faster and more cruelly and YOU pay for them!

Call your M.P. and your M.P.P. and complain. Venoplasty not only works for most; it is only a fraction of the price.

In South Ottawa call your MPP, Dalton McGuinty at Tel: (613) 736-9573

In South Ottawa call your MP, David McGuinty at Tel: (613) 990-8640

If you allow them to discriminate  against us, it will be just a matter of time before they discriminate against you!

A True Tale of Two Neighbours

Last week a young man - 25 years old or there abouts - got stoned out of his head on crack. He lives in the apartment building across the parking lot from me. He doesn't work. He is a drug addict and the government takes care of his daily needs. His entertainment includes making the lives of his good neighbours as miserable as he can. Apparently, he got it into his drugged up head that he wanted a satellite dish for his TV. I guess satellite dishes are pretty good - there are a lot of them around here. So he went out into the hall and headed for the stairs and door to the roof where the main satellite dish for that building is found. As luck would have it, the door was unlocked. He proceeded to try to hook his TV up to the dish.

The trouble with trying to do this type of mechanical work when you are stoned is that I guess your hands are not steady, or your eye focus is a bit off or perhaps you just get clumsy and he did! He exposed a wire. Then he touched it. Then it touched him back with a huge jolt of electricity which sent him head over heals off the roof. He fell five (5) stories to the ground below and went *splat* on the concrete. As it was the wee hours of the day, it took some minutes for someone to see him and see that he was hurt. Not just a little hurt. He was hurt BIG TIME! His head was smashed beyond recognition. His arms were broken in several places. His legs were broken in several places. His organs - well, who knew what a fall like that could do? The ambulance was called. The police were called. He was carefully scraped off the concrete. The landlord was called and a small group who were headed to work or school stopped to see what had happened.

Watching all this commotion is not how you want to start your day! Plays havoc with your breakfast for one thing!


The ambulance raced him to an Ottawa Hospital where doctors worked like ants to try to put him back together again. It's a week later and he is still in the hospital. He is still in a coma. The doctors and nurses are still working valiantly to save his life. The accounting department have sent in a bill, with additions to be made as needed to the provincial government and they will pay it - out of your tax money that has been earmarked for medical aid.  The City is supplying psychological help to those who witnessed it (also paid for by taxpayers!).

Meanwhile, across the parking lot lives a senior citizen who just happens to have M.S. I know her intimately. She worked for 40 years, often doing two and three jobs at a time and paying taxes on her earnings. She wasn't poor or destitute. She just loved to travel and she loved living like the  middle class so multiple jobs worked out fine for her.The she got cancer. Her money got reallocated to living until she could return to work. But her cancer left her with limited use of her right arm. So she took on jobs that she could do for periods of time that she could handle.And she paid her taxes! A second go around with cancer and then the dreaded diagnosis of MS followed.With O.D.S.P. and subsidized housing she managed quite well until her MS did one of those flare up sort of things and she never fully recovered from it. Her ability to walk has all but vanished though she is a great wall walker inside her own apartment. Then came W-5 and Dr. Zamboni and hope.

But the hope has been dashed! Her government which happily took her tax money for all those years will not allow her to get Dr. Zamboni's symptom easing treatment. Not even if she pays for it herself! Her doctor for her M.S. has called her a cultist (along with a bunch of other people in similar circumstances) and talks to her like she had an IQ of  50. It is all so depressing some days.

Today, it is just maddening. A solid citizen who has never broken the law can't get medical help while a  welfare bum who is also a drug addict, a thief and an aggravating cuss is waited on hand and foot, has bundles of  taxpayers money spent to save his sorry life and will undoubtedly continue to live off the taxpayer until he dies. Something here is not right! It is not even a bit logical!  It is totally insane!

Somebody please explain it to me so I can understand. The City's psychologists can't.

Open Letter to Dr. Turnbull of CMA

Dr. Turnbull

I am sure I am not the only one who thinks you need to look into the power structures within the medical practice. GPs trying to help their patients with MS have apparently been threatened by the various Colleges of Physicians and Surgeons across Canada if the patient is interested in having venoplasty done to relieve their symptoms. I say apparently because they will not go on the record for fear of having their livelihood taken away by these groups. It’s a kind of Catch 22 situation that neither the GPs nor the patients can (or possibly in the case of doctors) will be specific about. However, patients looking for aftercare for a venoplasty are most often turned down. Patients wanting to learn if poor blood flow may be their problem are routinely turned down. The various Colleges publicly say they will see that it is given but privately, they appear to do everything in their power to prevent it. I have seen this maneuver before. Not in medical circles but in legal cases – I used to work in a criminal law office. It is a maneuver often used by criminals as part of their various scams. Say one thing but do another, especially if there is no way for the average person outside of law enforcement to prove it. 

It would appear that the Code of Ethics is being rewritten to accommodate  a few doctors who’s power stems more from the money they have and can continue to amass doing nothing viable, than from the knowledge they should have. Medicine is no place for closed minds and it is certainly no place for common scams to be perpetrated on sick people who are desperate after 50 plus years of expensive drugs that apparently do nothing for the patient.

It also appears that there is a misconception, mostly found among our MS neurologists, that MS patients, because they are often hit with ‘cog fog’ are also innately unintelligent and stupid. This is definitely not the case. Just in case you do not understand ‘cog fog’, it is an inability to get the information one knows up front and deliverable at a specific moment in a conversation. It does, inevitably, come forward though quite often too late to use in that particular conversation or, should the other party know or think they know what one is trying to say, they will fill it in and the MS patient will recognize it as what they intended or recognize that it was not what they intended. Stupidity is not having the knowledge in the first place.

You really need to put help and compassion back into medicine, particularly for the MS patient who cannot get simple, less costly treatments that at least return some quality to their lives. You really need to remove the discrimination afforded pwMS – not every little thing that goes wrong with my body is automatically MS related. Treatments that are readily available to everyone else are refused to me and my fellow MSers.You really need to put a leash on the handful of doctors preventing us from having that quality in our lives.

Very Sincerely

Karen Copeland
MS Patient

Pharma and Big Pharma - 2 different things!

The More Things Change, The More They Stay The Same

At one time, as far back as the Ancient Babylon of the Bible, if you were a helpful, decent person Pharma meant natural plant medicines or, if you were an evil sorcerer it meant natural plant poisons. The definitive word was NATURAL. Both apparently worked well. You got better with useful natural plants or you died if someone slipped you a poison concoction - for years hemlock was a favored poison.

So it should not surprise anyone when Marijuana turns out to be one of those ‘good’ plants. Partly that came about because Marijuana became a social fad for fun and games. Of course, so is alcohol a social thing. It is also derived from plants and it can also be helpful medically. What they both have in common is that when over done, they turn people into babbling idiots who say and do stupid things. What alcohol had over marijuana is that it was an ‘adult’ thing and marijuana was a teen thing and everyone knows teens have no control. So we outlawed Marijuana. Takes care of those pesky teens!  NOT!! We also made it impossible to use it both legally and medicinally.

The trouble here is that it is not just Marijuana. There is an effort by the modern Pharmaceutical companies to use their influence (read money) to keep any natural medicine out of the mainstream and off all doctor’s prescription pads and out of their vocabularies. After all, if we find out that natural things like Aloe Ferox or Devil’s Claw or Marijuana relieve pain, then we will not be buying something like Oxycodone  or other synthesized in a factory drugs. Synthesized drugs are patentable and therefore valuable to the patent holder. You cannot patent natural. Perhaps the means of extraction but not the substance. If I hold the patent on some chemical concoction, I can pretty well name my price – and the Pharmaceutical outfits do a pretty good job of that. All they need to make people want it is a good line (read sales pitch), a good salesman – no better salesman for a medicinal concoction than a doctor and a desperate consumer (read Mark) Oh Gee! The standard pattern for a Scam! Now buy your way into the hearts of politicians and you can even run your scam legally.

So now we have doctors, who have learned their lines well (though I swear they have no idea or do not want to have any idea of the scam they are perpetuating) selling drugs of dubious ingredients, dubious results and outrageous side effects for some and for bigger than life amounts of money treating sick people who have often reached the point of desperation – it has been over 50 years since any disease or condition has had a cure for it found.

While this is not true of all doctors, it does appear to be the case for most neurologists dealing with the so called “autoimmune diseases’.  They know no facts about these diseases – there are very few documented facts to know and the ones that are there to learn can only be taught by those doing the suffering. As a good many of us have found out the hard way, they do not listen to us so they have learned nothing from us either. These doctors also act as “experts” for the government. They are not experts. They weren’t taught anything useful and they refused to listen to the only ones who can really tell them anything.

People getting any real relief from the symptoms of MS get it using natural items – enzymes, minerals, vitamins, diet changes. Or they have gone out of country and gotten venoplasty which has nothing to do with drugs. Small wonder those doctors making a better than average income derived from the sale of synthesized chemical drugs are upset. They have nothing medical to turn to anymore – they are so out of touch they could not even pretend to be credible in any other medical situation. Their egos will not allow them to drop that low. If they are middle aged or older, they can maybe retire – if they have handled their ill gotten gains with any wisdom, they should be able to do that. If they haven’t, well they certainly have the background to push drugs on the street. But that is a hell of a blow to their vanity. The ones I know are in for a very hard time after their not so little scam is laid out for the world to see.

It will not be the hard time I would like to see them live through. I would like to see them live with MS or Lupus or Parkinson’s or what ever their main focus is. But you can’t have everything. Gee! Sometimes you can’t have anything. I can’t get any real treatment for my MS but I have found a natural thing or two that alleviates a symptom or two and one of these days I will have the money to trip off to Albany N.Y. No thanks to the Canadian Government or the Canadian Medical system. The thanks will all go to others like myself with MS who have fought for equality and treatment, to Dr. Zamboni for a viable treatment but mostly for the courage to go up against the medical powers that be, to a handful of Canadian doctors and politicians who speak out in spite of the flack they take from other doctors and politicians.

Until that future date, I will continue to track down natural aids. I have no nausea and I have the pain under control so Marijuana is not a likely item on my shopping list but if Marijuana works for you, you won’t get any flack from me. Better that than Tysabri or like that.

An Interesting Inside Take on Medicine

 

Below is the beginning of a very interesting article on vaccines and autism.  You might wonder why someone with MS is putting up articles about autism. Several reasons actually. Like MS, autism is considered autoimmune. Like MS, autism is still looking for a cause. Like MS, autism is looking for a cure. Like MS, patients are at the beck and call of neurologists who only know how to sell drugs that don't help, often hinder and are expensive.It may be about autism but it says a lot about the way medicine is practiced these days. So the opinions and comments made by a neuro who is not a pusher for the chemical inventions of big pharma are interesting and perhaps have a clue to something that can help us with our MS. I have highlighted the paragraph that caught my eye and kept me reading.

Vaccines, Neurodevelopment and Autism Spectrum Disorders


The Danger of Excessive Vaccination During Brain Development: The Case for a Link to Autism Spectrum Disorders


Russell L. Blaylock, M.D.

In 1976, children received 10 vaccines before attending school. Today they will receive over 36 injections. The American Academy of Pediatrics and the Center for Disease Control assured parents that it was safe to not only give these vaccines, but that they could be given at one time with complete safety. Is this true? Or are we being lied to on a grand scale?

The medical establishment has created a set of terms, which they use constantly to boost their egos and firm up their authority as the unique holders of medical wisdom–the mantra is “evidence-based medicine”, as if everything outside their anointing touch is bogus and suspect. A careful examination of many of the accepted treatments reveals that most have little or no scientific “evidence-based” data to support it. One often repeated study found that almost 80% of medical practice had no scientific backing.

This is not to say that medical practice should be purely based on pure and applied science, as understood in the fields of physics and chemistry. Medicine, as pointed out by many of the great men of medicine, is an art. For a discussion on the proper role of medicine I refer the reader to my paper titled –Regimentation in Medicine and the Death of Creativity – on my website (www.russellblaylockmd.com).

To read the balance of this article, click on the link below.
http://web.mac.com/rblaylock/Russell_Blaylock_M.D./Articles/Entries/2008/3/12_Vaccines%2C_Neurodevelopment_and_Autism_Spectrum_Disorders.html

Poster #3

Attention:

MS Neuros and Politicians

Go ahead and pull this rope!

Killing me by hanging is way more humane than your present method –

drug cocktails and neglect

Poster #2

BLOOD FLOW!

Can’t leave home without it!

    

My Poster for the Rally on the Hill

My Poster for the Rally on the Hill

The Death Sentence is not

allowed in Canada

unless

You have M.S.

The Death Penalty Doesn't Exist In Canada! Bull Shit!! It's Alive and Well on Parliament Hill

The Death Penalty Doesn't Exist In Canada! Bull Shit!! It's Alive and Well on Parliament Hill

If anyone tells you that Canada does not have a death penalty - DO NOT BELIEVE THEM! Because we most certainly do. Right now there are at least 75,000 people with MS on Death Row, Oh, it's true, we are not behind barbed wire and bars all day. And there is no specific date for us to leave this earth but we are on a death watch nonetheless.

Our shackles are not made of steel. They are formed in our brains, a result of bad blood if you will. Blood that should flow through the body and be cleansed but isn't. All the crud it has picked up on it's trip to the brain, finds it's way to the bottom like silt in flowing water and leaves itself piling up in the brain. Like any other biologically active,  chemically active deposits, it damages the spot where it land. In people the damage is referred to as lesions on the brain and the damage is to the most vulnerable thing it hits - the nerves and nerve endings. We get symptoms such as loss of balance, loss of cognitive abilities, loss of energy, and inability to see properly, an inability to breathe properly, an inability to swallow properly. In short, we end up like human vegetables unable to control anything until we die. If that is not a death sentence, then nothing is.

And it is absolutely counter to any rule put forth by the United Nations or The Human Rights Commission. I would guess that the Human Rights Commission would call knowingly allowing this to happen to be Cruel and Unusual Punishment. Whether they just have not heard that this is happening in Canada or whether this is just one of those things that is found to be totally unbelievable about Canada is anyone's guess. I mean, Isn't Canada the country that gave us Peace Keepers to help save lives? Isn't Canada the country that gave us Insulin and saved untold diabetic lives all these many decades? Is it possible that Canada has sunk this low??

Well yes! It is! Still Canada, with the blessings of the Conservative Government, has done just that. Leona Aglukkaq, the Federal Minister of Health, did what she obviously thought was right. She went to the MS Society and it's neurologists, because she knows absolutely nothing about MS. And there she stopped. Big mistake! Had she done even a wee bit of research herself, she would have wondered what was being done with all that donated money. She'd have found out pretty quickly that it was not going towards anything useful, not even the few bucks, relatively speaking, that was ear-marked for MS research. Being that this is an issue that affects a lot of people, you would at least think she would get a second opinion from a totally different group. But she didn't or if she did, she chose to ignore it. Reminds me of Texas. The Thin Blue Line. And tunnel vision of those in power to play with a man's life for nothing more than corruption of the system. http://www.veoh.com/watch/v18681566sr4JJmmq A film that successfully argued that a man was wrongly convicted for murder by a corrupt justice system in Dallas County, Texas. The question is, "Who is going to argue our case of being wrongfully given a death sentence?"

It isn't our Conservative Government. Apparently the drug companies, bragging about their huge stock incomes have the corporate-thinking heads of government all wrapped up. Between the Oda Affair, the In and Out Affair, the Discrimination Against MSers Affair, The Harper Government Letterhead Affair and on and on, the Conservatives have destroyed all and any hope for a democratic Canada under them. They have totally destroyed any trust I had in them. The Liberals - well no new major scandals as they are not in any position of power but what the hell have they done to earn my trust. Well one exception - Kisty Duncan.The N.D.P.? Same questions. Answer - Nothing. So that is one out of three hundred and five I think it is,and she is not in my riding.

That lack of trust, by the way, is not a Conservative Party thing - it is an all encompassing thing. If it was not, the various parties would be talking about what they would do for us - Canadians. Some how being able to make a citizen's arrest does not seem all that important to me. In 65 years I have never even wanted or needed to. What good is it to me now? I have MS. The fatigue is so bad, I do not get out of the apartment. A citizen's arrest by a lame MSer is going to put a crook breaking in here on the floor in gales of laughter but not much else. Having rifles? What the Sam hell do most of us need rifles for? Surely some small changes in the law will keep the law but make it more useful to those few who need to have a rifle. I do have to say, that I grew up on a farm and there never was a need there just because we were farmers. The N.D.P. have come out with something useful - better Medicare but they were careful not to step on any corporate toes by adding, in a manner of speaking, not for MSers. The Green Party? Well so far she has my consideration. Perhaps it is the way journalists are covering the election but I have seen no hate literature from that corner. She has a platform ... well sort of. And it is vague enough to  keep my interest but not not strong enough to guarantee my vote.


Well that lays waste to hoping for help from Federal politics. Who is next?  The Big "Charitable" Organizations like the MS Society. Well gee whiz! They are not in the business of charity after all. They are in bed with the corporate drug companies. So write them off the list. Lord knows, anything we write gets taken off their sites post haste and not just in Canada. They like to do that in the USA and Great Britain too. Go figure! A Multiple Sclerosis Society that doesn't want to hear from people with Multiple Sclerosis.

Maybe the Provincial Governments?  Don't hold your breath! Most of them look to the Feds and big corporations for income.

Looks like I am in trouble with a bunch of people. I said in a blog, that I think the Conservatives have given me a death penalty and I would not vote for them. And I won't. One lady took offense. She  declared that MS bogs were for talking about MS and politics should not enter into it. Really! If it were not for politics, we would all be treated and treated on our Medicare. Then she told me she would have me banned. Again, Really! It is not her site for starters and it is such a bully tactic. So bloody Conservative. Then another lady came on and told me I was entitled to my opinion, Canada being a free country and all, but she was voting Conservative.She was on my friends list so I was a bit taken aback. She took offense also to my calling the Conservatives the people who had given me a death sentence. And I should not say that. Now let's see. She does not have MS. Her son does. So she is only guessing what it is like. She took him out of the country for treatment so she could afford it and boy did she win the jackpot. I'll bet her son is not as much work as he used to be.  How nice for her but she is still going to approve my death warrant and thousands of others death warrants by putting her X beside a Conservative name on her ballot.Trouble with all of this, is that I find it hard to believe she is a selfish, hate filled person. Right or wrong,I am writing it off to political  naivety. So if you are reading this and you are getting angry because you are planning to vote Conservative, Tough! You put your X there and you are just as guilty as the jerks on the Hill making these decisions. They think they are making them with your blessing. Think before you leap into bed with them. Your X beside their name is your blessing for everything they do, including leaving 75,000 Canadians to die in misery.

I used to be a pretty good typist - back in the days when my fingers hit the keys I told them to hit. This little rant took 2 days to type up. So I am off to bed. God willing, I'll die before morning. I do not want to put in any more days like these past few weeks. If you can afford the treatment, go and get it! Do not delay. You do not want to get where I am right now. Please do not write me. I am an atheist so the God stuff doesn't fizz on me. Don't tell me life is sweet cause it isn't and don't assume that because I wish I were dead that I have the courage or strength to act on it. That would make an
ASS of U and ME. But do write your MP, your MPP, the College of Physicians and Surgeons, the newspapers, the TV stations. Write everyone. :o)

Canadian Medical Association

The letter below was sent to Dr. Jeff  Turnbull of the Canadian Medical Association by the people who signed it  - people who have already been treated for CCSVI or about to undergo it. I am in the process of sending it to every newspaper in Ontario (as I write this I have sent to about 50% of the newspapers who offer emails). For those paper readers who were sent here to read the entire letter, (some can only print highlights due to space allowances)  welcome. Feel free to check out any pages herein. We hope you do not suffer from MS or CCSVI and just came here for information. If you do suffer from MS or CCSVI, know there is hope for us and please join us in fighting to realize that hope.

Karen Copeland
MSDragonSlayer


To: The Editor

The letter below was sent out to Mr. Turnbull . It is self explanatory. It is also something people with MS in your area should know about and people who do not have MS but may face it one day should know about. If you could find a spot in your newspaper to print it, we would be grateful.


Sincerely,

Karen Copeland



22 March 2011



Dr. Jeff Turnbull

President

Canadian Medical Association

1867 Alta Vista Drive

Ottawa, Ontario, K1G 5W8



Dear Dr. Turnbull,



We are writing to you about multiple sclerosis (MS).  While thirteen names of MS sufferers, or family members of MS suffers, are attached to this letter, each one of us represents hundreds of MS sufferers and families across Canada.



The MS world was turned upside down in November 2009 when the work of Dr. Paolo Zamboni was brought to the attention of the public in Canada and around the world in a W5 documentary.  W5 reported that Dr. Zamboni found that blood is refluxing into the brains and spinal columns of MS sufferers due to malformations of the vascular system, primarily the jugular veins, the azygous vein and, in some people, the iliac vein.  Dr. Zamboni did not invent the vascular component of MS; that component has been studied and observed by scientists since 1839.  The International Union of Phlebology, whose members are venous experts, confirmed in December 2009 that the venous malformations Dr. Zamboni described as Chronic Cerebrospinal Venous Insufficiency or CCSVI are, in their opinion, congenital and preceding MS lesions.



Treatment for CCSVI is balloon angioplasty. It is a well-known, low risk procedure developed by Dr. Andreas R. Guentzig in the 1970s that quickly became a standard of care without any double-blinded, randomized, controlled clinical trials.  Treating patients led to knowledge that led to the protocols followed today.



Thousands of MS sufferers in Canada felt a surge of hope.  Until November 2009, those MS sufferers with relapsing-remitting MS could take expensive disease modifying drugs that recent studies have shown to be ineffective in slowing progression of the disease or in reducing relapses (see Appendix to this letter).  In some cases, MS sufferers were made worse by the drugs; in other cases MS sufferers lost their lives to them and others are still struggling.  Tysabri, as of 4 March 2011, has been linked to 21 deaths and permanent brain infection in 102 people.  The numbers increase monthly as Biogen reports new cases of PML as required by law.  The newest entry in the drug market is Gilenya.  It has its own side effects that include, but are not limited to, permanently slowed heart rate, liver damage, macular edema, eczema, increased hypertension, and reduced white blood cell count.  But the MS neurologists who are front-line marketers of the new drug assure MS sufferers that the side effects do not manifest immediately.  It may be fortunate for MS sufferers with other, more aggressive types of MS that no drug treatment is available for them.


In the past 16 months, Canadian MS sufferers have been subjected to unprecedented levels of discrimination.  They are denied access to a simple procedure that is available to any other Canadian requiring venoplasty for other medical conditions and who has not been labeled “MS”.  They are forced to fight for their lives and the lives of their families and are forced to leave Canada on a quest for an improved quality of life to seek treatment in countries that, from their point of view, appear far more progressive and inviting than Canada.


 Why are Canadian MS sufferers denied treatment in their own country?  Dr. Zamboni’s work has been attacked by MS neurologists, especially research neurologists backed by pharmaceutical companies with enormous MS drug markets, who may be suffering from the Semmelweiss Reflex.  The Semmelweiss Reflex is a metaphor for the reflex-like rejection of new knowledge because it contradicts entrenched norms, beliefs or paradigms.


MS sufferers are well aware that MS is a multi-billion dollar a year industry and that the only groups that benefit from this industry are MS neurologists and pharmaceutical companies.  MS sufferers are also aware that neurologists may be experiencing Gatekeeper Syndrome in addition to Semmelweiss Reflex; Gatekeeper Syndrome is described as a lack of interest in anything, no matter how important to your work, that does not involve you being a gatekeeper.  MS sufferers know that MS neurologists are furious that a vascular surgeon has illustrated so well that the unproven autoimmune theory for MS that the MS neurologists have chased for over 60 years is, in fact, wrong and has achieved very little for MS sufferers.  Two international conferences held this month, one in Poland and one in Italy, were highlighted by studies that will soon be published that confirm Dr. Zamboni’s work and the improvement in the quality of life for MS sufferers who have been treated for CCSVI (see www.isnvdannualmeeting.org/press-area.html, International Society for Neurovascular Disease).



However, MS is a lucrative Industry that supports the MS neurologists and the pharmaceutical companies and perhaps that fact is the reason for the fury of the MS neurologists – the money they receive from pharmaceutical companies in research funding, consultancy fees and speaking honoraria is threatened by CCSVI which represents a paradigm shift in the understanding of MS.  One prominent MS neurologist has stated that CCSVI will ultimately be proven to be a hoax and has labeled those people who think there is merit to CCSVI “cultists”.  However, 60 years and billions of dollars of research and the same MS neurologists have not proven viral or autoimmune theories as the cause of MS.  Not one MS Society or pharmaceutical company world-wide can state with absolute certainty that MS is strictly an autoimmune condition nor can they explain what causes MS.



MS sufferers are also aware that the MS Society of Canada has behaved badly regarding CCSVI and has failed to live up to its mandate.  It operates in a paternalistic manner and as more of a marketing arm for the pharmaceutical industry than as an advocate for MS sufferers.  That is not surprising since the MS Society here in Canada is run by the angry, disgruntled MS neurologists.



Unfortunately, and sadly for MS sufferers and their families, government officials listen to the MS Society of Canada and the neurologists who run it.  We have seen an alliance between the Canadian Institutes of Health Research and the MS Society which resulted in a secret meeting in August 2010 with a panel of non-experts considering the merits of CCSVI.   Many of the panel members have severe conflicts of interests and the panel included some of the angriest neurologists who have been vitriolic in their condemnation of Dr. Zamboni and CCSVI.  The outcome of that meeting was never in doubt since the Chairman, Dr. Alain Beaudet, admitted that CCSVI experts such as Dr. Sandy McDonald were deliberately excluded.  We have seen the Society launch unnecessary studies geared to obtaining information that we already have.  The studies are being conducted by neurologists.  The outcome of these studies is not in doubt.



Because of a small group of angry, disgruntled MS neurologists, Canadian MS sufferers, at great expense and hardship, are forced to travel to the United States, Mexico, Poland, Bulgaria, Malta, Egypt, Costa Rica and India to receive a treatment for a vascular condition that is readily available in Canada – except for MS sufferers.  The exact number of MS sufferers who have been treated worldwide for CCSVI is not known but estimates range from 12,000 to 15,000.  Those who have been treated report results that range from spectacular to moderate to minimal.



Because of a small group of angry, disgruntled MS neurologists, Canadian MS sufferers are denied adequate follow-up care in Canada after treatment.  Once again, the well-being of MS sufferers is compromised because they sought treatment for a vascular condition outside Canada when they are supposedly guaranteed the right to the treatment in Canada by the Canada Health Act.



Dr. Ignaz Semmelweiss was hounded from his profession and eventually committed to an asylum; he tried to introduce hand washing to doctors to prevent women dying in childbirth from puerperal fever.  In the 1980s Dr. Barry Marshall was vilified by the medical community when he suggested that bacteria cause stomach ulcers; he had to give himself a stomach ulcer to prove his point.  He won a Nobel Prize for medicine.



There is nothing unethical, dangerous or controversial about balloon angioplasty.  What is dangerous and unethical is prescribing drugs to patients knowing that the drugs are ineffective and unsafe.  What is dangerous and unethical is working to deny people a treatment that is available in Canada and that is a right guaranteed to them.  What is dangerous and unethical is the wedge that has been driven between thousands of Canadians and the medical community in Canada.

We are aware, Dr. Turnbull, of your interest in re-vamping healthcare in Canada.  We would suggest to you that re-vamping the ethics of the doctors who deliver healthcare in this country should be your top priority.  The medical community is failing Canadians and it seems, as

Dr. Louis Francescutti (President, Royal College of Physicians and Surgeons of Canada) mused in a recent interview, that too many doctors are more interested in protecting their vested interests than in taking care of their patients.  It is a sad state for Canadians.  It is a sad state for medicine in Canada.



We would like to know if CMA will publicly support MS sufferers acquiring access to testing and treatment for CCSVI in Canada.  We would also like to know if CMA will publicly urge doctors to provide follow-up care in Canada for MS sufferers who are treated for CCSVI outside Canada.



Sincerely,



Christopher Alkenbrack, (Nova Scotia), treated 2010 Poland

Francine Deshaies, (Quebec), treated 2010 and 2011 Poland

Judy Filipkowski, (Ontario), treated 2010 Albany, New York

Steve Garvie, (Ontario) treated 2010, Barrie, Ontario,

Chrystal Gomes, (Ontario), not treated

Myles Higgins, (Newfoundland and Labrador), brother-in-law of MS Sufferer

Val Hoenecke, (Saskatchewan), treated 2010 Poland

Linda Hume-Sastre, (Ontario), waiting list, Albany, New York

Watson McGregor, (Saskatchewan), treated twice 2010 Bulgaria

Carol Prest, (Alberta), sister of MS sufferer

Amy Preston, (Ontario), treated 2010 Albany, New York

Laurel Radley, (British Columbia) treated 2010 Australia

Michelle Walsh, (Saskatchewan), treated 2010 Bulgaria, 2011 California



APPENDIX

STUDIES ON DISEASE MODIFYING DRUGS

Boggild M, Palace J, Barton P, Ben-Shlomo Y, Bregenzer T, Dobson C, Gray R.,

Multiple sclerosis risk sharing scheme: two year results of clinical cohort study with

historical comparator. BMJ. 2009, 9 pages.



Ebers, G, Traboulsee A, Li D, et al., Analysis of clinical outcomes according to

original treatment groups 16 years after the pivotal IFNB-1b trial. J Neurol Neurosurg Psychiatry, in press, 6 pages.



Veugelers PJ, Fisk JD, Brown MG, Stadnyk K, Sketris IS, Murray TJ, Bhan V.,

Disease progression among multiple sclerosis patients before and during a

disease-modifying drug program: a longitudinal population-based evaluation. Mult Scler. 2009 Nov;15(11):1286-94.

Places to learn more
http://www.facebook.com/home.php?sk=group_145432328854156&ref=notif&notif_t=group_activity#!/ccsvi.ms.toronto.canada 

and
http://ccsvi-ms.ning.com/
and 

http://msliberation.ca/MS_Liberation_Group/Welcome.html

"It's premature to do that."

Today the IFPress.com ran an interview with Deb Matthews. http://www.lfpress.com/news/london/2011/03/21/17696581.html#/news/london/2011/03/21/pf-17696576.html 

Below is my response to Ms. Matthews


On the subject of MS, that is the big story in alternative care. Why isn't the province doing clinical testing to see if the procedure can be done safely and in Ontario?

"It's premature to do that."

If we die prematurely,from not getting 'premature' but required medical help, are you going to plead guilty to manslaughter?  I feel my life going down the tubes daily because you will not act like a responsible and thinking Minister of Health. Think about that. And if you think you will walk away unscathed, think about your counterpart in Nova Scotia who is being called a murderer all over the internet. And she is a murderer in my opinion. She could have seen that Mr. Peart got the medical attention he needed instead of listening to a bunch of pill pushers in white coats. You politicians did not put this stupid spin on heart transplants when was experimental. Why are you doing this to us?

Venoplasty is not even a new procedure. It is done every day in Canada for kidney patients.There is only one explanation that makes sense - The drug companies are influencing your thinking. Whether that means you don't think because you take drugs or because you are being paid off is all we have to find out. And we will find out.

Your "expert" team of doctors are expert at nothing - if they were, they'd have figured this out years ago - the research on this is over a hundred years old. What they, your team of "experts", figured out years ago was how to scam people with the government's help - I do believe that is call complicity in a court of law. If I were the only angry person, you could probably trash this and forget about it. But I am just one of a growing group who are not so willing to become sacrifices to the greed of a bunch of thieves.

If you want real experts, why not talk to MSers. We are the only 'experts' on MS. Your "experts" do not know what causes MS and they have been batting zero when it comes to a cure or a viable treatment. They do not feel confident in treating us but there are a lot of doctors with venoplasty experience who are more than willing to learn and are only held back by you and your threats against their medical licenses. It has nothing to do with lack of confidence in the hands of the correct doctors. They don't even get the diagnosis right - many MSers have found out on their own nickle that the do not have MS at all but Lyme Disease. There is a viable treatment for Lyme and there is a viable treatment for CCSVI which is, if not the cause, it certainly is a symptom, of MS.

People do not die from cataracts or hip or knee surgery. People do die from MS. "We have very high quality standards here in Canada"  Maybe for people with cataracts but definitely not for people who have MS. We have quacks and pill pushers ($4,000.00 per treatment for gilenya - is it laced with gold dust?) leading the government around by the nose. Are you going to wait until people start calling you a killer or are you going to stop sitting on your hands and start saving our lives and your reputation?

You can fool all of the people some of the time; you can fool some of the people all of the time, but you are fooling less and less people on the subject of MS so stop trying. I guarantee you, it will come back and bite you.

I am guessing a real response from you is not going to happen being as you are a politician first and a woman and human being last. But I do live in hope.

Sincerely

Karen Copeland