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

Letter to my MP, Mr. McGuinty

Letter to my MP, Mr. McGuinty

The heading was simply, Bill Peart passed away this morning

Who is Bill Peart, you ask. Bill Peart was a Son, a Husband, A Father, a Friend and a man with MS. The Government of Canada effectively killed him. Harper's puppet, Leona, made it impossible for Canadian MSers to be treated in Canada. Maureen MacDonald, NDP Minister of Health in Nova Scotia declined a request to help him get treated at home and the rest of you, except for Kirsty Duncan sat on your hands and babbled on about ethics??? and money. Canadian's Health and Canadian lives are obviously unimportant to you.

Ethics is something none of you seem to understand even the basics of. Money does not vote though it would not surprise me even a little bit to find out that any or all of you use it to buy votes. If you think all these scandals surrounding the Conservatives are helping you, the Opposition out, they really are not. Not one of you will get up and say, "Enough is enough" or 'the Canadian people's lives are more important than money.' Clearly, the last breakfast that you were invited to to hear about CCSVI but didn't attend was not important enough to say, 'sorry, I have a meeting about lives to attend and it is more important.'

So here is lesson 1 in ethics. It means Motivation based on ideas of right and wrong. It is wrong to let people die when there is help out there that will help them live. It is wrong to know there are people in need, that it is in your power to at least try to help but you don't.

For God's sake, Mr. McGuinty, would you get off your wishy-washy duff dust off your ethics  and yell that something needs to be done. Would you keep yelling until something is done.Or did I really help elect a gutless wonder into power? It won't happen again. Things have got to change. Citizens have got to start being important.
Bill Peart died this morning. Leona and Maureen held the weapon but your silence makes you culpable too.

Bill Peart passed away today. He died partly because of his physical condition but mostly due to negligence on the part of the Nova Scotian and Canadian Governments. My condolences to his family. A pox on the Nova Scotian and Canadian Governments.
Maureen MacDonald, Minister of Health for Nova Scotia, declined when asked to step in and get Bill treatment at home after it became too late for him to get to Albany, N.Y. Let Maureen know what you think. Her email is:
health.minister@gov.ns.ca
From Facebook

Very Sincerely

Karen Copeland
229, 22100 Russell Road,
Ottawa, Ontario
Tel:613-260-3448

--
Shame on Canada!
http://its-time-to-slay-the-ms-dragons.blogspot.com/

Nova Scotian MSer passes away

Bill Peart passed away today. He died partly because of his physical condition but mostly due to negligence on the part of the Nova Scotian and Canadian Governments. My condolences to his family. A pox on the Nova Scotian and Canadian Governments.

Maureen MacDonald, Minister of Health for Nova Scotia, declined when asked to step in and get Bill treatment at home after it became too late for him to get to Albany, N.Y. Let Maureen know what you think. Her email is:

health.minister@gov.ns.ca

Calling all MSers & CCSVIers in Ottawa, Hull Gatineau and nearby

MS/CCSVI Meeting

When:  Sunday March 20, 2011

Time:    6:30 pm

Where:  Jack Purcell Community centre Room 203

The agenda for the meeting is as follows:

1) Rally on the Hill : May 5th ( we will be discussing the need to lobby the provincial government as well...Toronto anyone?)

2) Letter writing campaign to MPs and MPPs

3) Demonstration on May 4th

4) AFA: we need a neurologist's opinion

5) Engaging local MS Society: any ideas?

6) Update from Dr. Kirsty Duncan

Your input is important. Please make a special effort to come to this meeting.

Tell Him NO

 Tell Him NO!

Today in my email I received the following from the Liberal Party. I watched the videos mentioned. My response is at the bottom.

Karen --

Watch the ads and make a donationAround the world, people are fighting for their democratic rights. Here in Canada, we can’t afford to take them for granted.

That’s why, for weeks now, we’ve warned Canadians that we have a Prime Minister who attacks our democratic institutions and has lost touch with the priorities of middle-class families.

Liberals are fighting back. We’re standing up for democracy in Canada.

In the next 24 hours, two new Liberal TV ads will hit the airwaves.

(Click here to watch the ads and please make a donation to keep them on the air.)
https://action.liberal.ca/en/donate?cid=2272&typecode=300011717&utm_source=lbst&utm_medium=e_blast_en&utm_campaign=march2011ads

These ads are tough, and that’s exactly what Canadians need us to be.

“Abuse of power” reminds Canadians how Stephen Harper has gone too far and thinks he’s above the law.

And “Economy” speaks to Canadian families who’ve been forgotten by Stephen Harper – and makes the case that the government’s priorities need to change.

I’m proud to defend our values as Canadians and fight vigorously for what we believe in.

Take concrete action now. With an election a real possibility — and soon — it’s time to fight back against the Harper regime.

Political donations entitle you to a tax credit of up to 75 per cent, which means the after-tax net cost of a $100 donation could be as little as $25. That’s real power to affect change at your fingertips.

Donate $100 today — or whatever you can afford — to keep these ads on the air and stand by my side in our fight to defend democracy in Canada.

http://lpc.ca/donateads

Thank you.

Michael Ignatieff


Email updates like this one are the most effective way for us to keep in touch. To change your email preferences, including preferred language, or to unsubscribe, please follow this link.

To contact the Liberal Party of Canada, please reply to this email. Our mailing address: 81 Metcalfe street, suite 600 Ottawa ON K1P 6M8.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Had I not written several letters about the Conservatives attitude towards us, my attitude might have been different. But I did and I am most annoyed that I (we) have been ignored. so I wrote back:

You did not even mention how he (Harper) is refusing Canadians with MS any viable medical aid at all. Canadians with MS are dying. Looks like you don't care either.  Sorry. I cannot donate to this.

Karen Copeland.

Even if you did not get the email, regardless of who you vote for, let the Liberals know that our fight should be part of the outcry and not swept under the carpet by the opposition  like it apparently is. The return address to this email is Michael Ignatieff <info@email.liberal.ca>

 ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Further info for you:

Video Bill Code to Parliament March 10, 2011
http://www.nationalccsvisociety.org/mar10-2011-ottawa-mp-session.html

Realistic Expectations

Realistic Expectations

Since this CCSVI Treatment became news back in 2009, I have watched (with envy) all the good pioneers we have among us who had the money, the courage and the Hope to give this a try. I have read a lot of really good results and I have joined others in aching over their lack of results.

Today, on Facebook, I read an item that puts things in their place; that make me sit back and be realistic in thinking about this treatment. I am going to share that with you here.

Michelle Walsh

FRAME OF MIND GOING INTO THIS CCSVI JOURNEY

I just want everyone who is going into their CCSVI Treatments soon to be in a realistic frames of minds so you don't set yourself up for disappointment.

I know there are alot of "Before" and "After" videos out there to watch and this is good to show you there is a reason to have HOPE. But what you need to know is we all experience different results after CCSVI and this takes months and months for some to even notice anything. This treatment first and foremost gets your blood flowing properly again and if this helps slow progression down of your MS then that is so worth it!

I did not have high expectations going into this except that I had nothing to loose and everything to gain by trying. I now have confirmation from my MS Neurologist that my SPMS in now "Clinically Stable" and this was all I could have ever wished for as we all know there is nothing that does that.

I just want you to remember there is a role you have to play in this too. We don't just get treated and then magically we are better. We still have MS. You have hard work ahead of you too. Not only do you need to start eating better for your vascular health but supplements to help with keeping the inflammation of your nerves down etc, exercising/physiotherapy to work on your weak and atrophied muscles, learn how to relax/meditate, and many other aspects to healing. This takes time and doesn't happen overnight. By these amazing Doctors who put you back in the 'Awesome Zone" of proper blood flow is a gift and not to waste that and enjoy everyday you wake up and have HOPE with this awful MS Monster we have. A cold/virus can make you think you have restenosed and its hard to not get anxious but really learning how to relax and just take it easy will help before you set the "Panic" button off. But remember if you do not feel right or you feel something might be going on then you need to call and talk to the office here right away the Doctors need to know this so they can help you plan the best course of action to take.

I never noticed my improvements at first that was my husband who did and he was also the one that said "Any improvements you get to help your MS Symptoms is like icing on a cake from here on in because you have had MS for 19 years-your whole adult life who knows if you have permanent damage?"
I have also had good days and bad days this is typical from what I have heard from other friends with all of this. It is what we refer to as the "roller coaster" ride. This group was created by patients for patients and we are all in this together and we are in this group to be positive and support to one another. So have a great day everyone!!

NDP - New Democrat Party or No Damned Purpose

Sherry Drew's letter from Mr. Layton really needs a response from everyone. Here is mine.





Hon. Jack Layton
House of Commons
Ottawa, Ontario
K1A 0A6

March 15, 2011

Dear Mr. Layton,

Tonight I read a letter from you to one of our members at the CCSVI blog I belong to on Facebook. While I was pleased to see your response was not totally negative I am disappointed that it is so lacking in starch as well. If this venoplasty we MSers are so anxious to have available to us were a treatment for  prostate cancer instead, would you be so limp wrist in the stand you are taking? If I am not mistaken, there were no trials for the treatments available for prostate cancer. Initially, they did the best they could and improved upon it and continue to find ways to improve upon it. It never became a political football. Of course there is the difference that the doctors treating you and those treating me are two different animals altogether.

Starting with your diagnosis. After the correct tests, you know you have cancer. After no definitive tests and a lot of anecdotal information I give them, they guess that I have MS. Have you listened to the MS neuros? Anecdotal evidence (as far as CCSVI and venoplasty is concerned) is not reliable and probably is just a placebo effect. But it is reliable enough for them to diagnose MS with?? The only proof that I have MS is anecdotal - sure the MRI shows lesions but Lesions in themselves are not a sign of any particular condition. It could just as well be lupus or Lyme disease.

Speaking of which, are you aware that Lyme and MS have the same symptoms? Except that Lyme is bacterial and can be treated effectively and in short order with antibiotics. Are you aware that none of us are given proper tests for Lyme? Are you aware that several Canadians have taken proper testing for Lyme on their own nickle only to find out they have endured MS CRAB drugs  for years when, in fact, they had Lyme? Even before CCSVI became a news item, we should all have had this eliminated but we were never told it was even a possibility.

But back to the MS. Now that I have been given this diagnosis, if I am rich enough, they guess I should be on a CRAB drug at around $2,000 - 4,000.00 per month. Here is where being poor is a blessing in disguise because if I am not rich enough to foot the bill, I am just ignored or perhaps given epilepsy drugs even though I do not have epilepsy (that's what they did to me). It's a blessing in disguise because it has never been proven that the CRAB drugs do anything good though it is pretty well known that they can and have done damage to some people. Where is our Parliament when we need drug testing that is reliable and properly done? Gee! I have yet to hear anyone on the Hill get up and demand proper testing with proper precautions. Does it ever set you to wondering what the hell these drugs are made with that makes them worth thousands of dollars? Gold dust perhaps? I guarantee you, if you can find a way to get the price of these MS drugs down to less than a couple of hundred dollars per month per person, the entire question of whether CCSVI is safe or not will magically disappear. The money makes it a good scam-able item and the MS neuros are licking their chops. Without the drugs, they would go broke in short order and move on to something more lucrative.

No one has called venoplasty a cure for MS but many have found it relieves a good many of the worst symptoms. It puts some quality back into our lives. It gives us back a bit of our independence, and our self-esteem. This is every bit as much a scandal as the Bev Oda affair or the In and Out Affair. Actually, it should be a bigger scandal because it deals with people's lives, not just their money. So please tell me why, there is not one man and only a couple of women in the House of Commons with even an iota of consideration for their fellow human  beings? With any logic? With any balls? Why? Have you all forgotten who pays you and why you are there?  When, oh when are you going to start defending the people first and the money second? The answer should be crystal clear. Money does not vote; people do. However did you let a man with a minority government become the dictator he has become? He, via his Health Minister, has dictated that people with MS shall die a slow and horrible death. The next time you are tempted to stand up and speak against Ghadaffi and the horrors he is inflicting on the Lybians, don't! Not unless you are willing to speak out against our own little dictator and the horrors being inflicted on Canadians. You can start with the medical abuse being meted out on Canadian people with MS. That kind of charity used to be a foregone conclusion in Canada. It isn't any more. Make charity begin right here at home again.

Speaking of lives and charity, are you aware that one of the Provincial NDPers, Maureen MacDonald, has refused to help a man dying of MS in Nova Scotia? She says her hands are tied. The only one tying anyone's hands is herself. Medicare is a provincial affair in the end, isn't it? She is in a prime spot to send the Conservatives' trash right back at them but she didn't. Bill Peart will die from neglect given by his governments and I, for one, hope this ends up in a criminal court of law.

What I want to know from you, Mr. Layton, is why?

Very Sincerely
Karen Copeland
229, 2100 Russell Road,
Ottawa, Ontario
K1G 3W7


After reading some of the responses on Facebook, I sent this as well:

Re: CRAB Drugs - I tend to lump all MS drugs into that category - mostly because the word Crab brings up mental images of pubic lice and is disgusting and offensive. In fact, my definition is inappropriate as CRAB refers only to 4 specific drugs. However, I would be grateful if you could apply my definition rather than the medically correct one. I do mean all MS drugs including the new Gylenia which is coming for $4,000.

Thank you

Very Sincerely,
 
Shame on Canada!
http://its-time-to-slay-the-ms-dragons.blogspot.com/

Out of Balls in Halifax and Ottawa

March 10, 2011

Looks Like we are Out of Balls in Halifax and Ottawa

Chrystal Bruce put a letter she wrote up on Facebook.

http://www.facebook.com/home.php#!/notes/crystal-ann-bruce/letter-to-heath-minister-maureen-macdonald-after-ctv-news-march-92010/10150447275125171

If one letter is good, lots of letters are better, so if you are a Canadian MSer or the relative of a Canadian MSer, and you would like the option of doing something proactive for those of us with MS, then write and tell the Minister of Health in your area and Leona Aglukkaq in Ottawa that it is your body and it should be your choice to have yourself checked out for CCSVI and then treated for it should the tests show venal blockages.

I did. Here is my letter to the two ladies (and I sent a cc to Deb Matthews as well.)

Dear Leona and Maureen,

Being as how you are both female, we don't expect balls. We expect more than balls. We expect strength and compassion and intelligence and logic.

Our female predecessors did not fight as hard as they did for our rights to end up back where we started - non-people with no rights, nothing but chattel because women like you appear to have relinquished your strength and compassion and intelligence and logic to what? Stephen Harper? Big Pharma? Puffed up, pontificating neuros who know nothing about MS? I have come to expect this from Conservatives but, Maureen, this is disgraceful conduct from an N.D.P.er.

What conduct? Your treatment of MSers in general and that of Bill and Donna Peart in particular.
http://watch.ctv.ca/news/latest/family-plea/#clip430619

You talk about safety. Doing nothing is about as safe as a skier hit by an avalanche who finds he has no broken bones after his fall but, gee! He is buried under 20 feet of snow and can't breathe and there is no help on the way even though you know he is there. If you were that skier, you would want someone to help you. Not doing so is negligence. Death by negligence is murder. Death by negligence and for profit is murder of a higher degree. We cannot prove the profit angle yet but the circumstantial evidence is there and we're working on the hard copy evidence. There is no statue of limitations on murder.
http://www.youtube.com/watch?v=kOW8LNU2hFE

Your time in office is not guaranteed beyond the next election. Right now, our time with MS is guaranteed for life. You ladies have verbal diarrhea on the subject of safety when it comes to venoplasty but you ok the use of drugs that already have killed people and are experimental and have already proven themselves useless as a treatment for MS. There is no logic in your arguments at all. There is no intelligence in your arguments at all. There is definitely no compassion for the MSers in your constituencies at all. There is no strength coming out of your offices at all. Abuse of power- yes; strength - no.

This is not a safety issue. Venoplasty is done daily in Canadian hospitals for other conditions. This is a power thing. If you need a refresher course on what happens to people who abuse their power, just turn on the evening news and watch the news out of the Middle East. Or you can check out our own history - go to the 1993 federal election.

Up until a year ago, give or take, I would not have wished MS on my worst enemy. That is not true anymore. Now I wish it on you. It seems to be the only way you will ever come down to earth and see what you are doing to those of us with MS. Then I hope you have to live with your own rules about it. Sadly for me, I do not own a genie in a bottle to grant that wish.

I can live for the day when I will see the electorate bring you down and then I can live for the day when I will see a judge's gavel put you away. Or I can live for the day you find some strength, some compassion, some intelligence and some logic on the subject of MS and CCSVI and venoplasty. You tell me which of those options I'll be cheering - Bill and other MSers being given back some quality of life or all of us cheering your demise.

Maureen, do something decent for Bill Peart and his family. Leona, do something for Canada's MSers. There, but for the Grace of God, goes you. Grace of God in matters of health is a fickle thing.

Very sincerely

Karen Copeland
MS dragonslayer
Ottawa, Ontario
CANADA



--
Shame on Canada!
http://its-time-to-slay-the-ms-dragons.blogspot.com/
 

Don't get sucked in!

I Have MS

Approximately $0.60 of every dollar you give to the MS Society is used for paycheques and furniture. It does NOT help people with MS.

Save your charitable money or make a donation to Angioplasty for All.

http://www.angioplastyforall.com/content.php?doc=3

Do not be sucked in by their cutsie teddy bear

They do not know what causes MS. How can they expect to find a cure??? They do not even try! There is no $$ is finding a cure; there are billions to be made by pretending to look!

Is this Ottawa 2011 or Is it Berlin, 1939?

March 1, 2011

Today, I went on Facebook and the first thing I saw was this
http://www.thestar.com/news/canada/article/946532--ms-patients-to-get-more-help-at-home

I am hoping MSers and friends and relatives will join a letter campaign to Ms. Matthews. Her email address is    "Deb Matthews" <ccu.moh@ontario.ca>

Tell her what you think. I did.and here is a copy

Dear Ms. Matthews

Today's news about more aftercare at home is great! Well, it was until the last paragraph where they note who is on your "expert" Advisory Board.
The MS Society and their neuros are NOT experts  in MS. That is not an opinion. That is a fact!

So far, people who had Lyme Disease have been misdiagnosed and made to suffer not only the disease long term but the useless and often dangerous treatments these neuros have prescribed. And most of those drugs have not even passed the safety test before they are on the market. We need you to address the Lyme Disease connection and do something forward thinking about the test for it. It is called the Canadian Gold Standard but it should be called the Canadian Fool's Gold Standard. If we want to check ourselves out for Lyme - Gee Whiz! We have to go south of the border. I know that should have been corrected before you got the Ministry but it wasn't. That is not a good excuse for you to carry on with your predecessors mistakes.

Secondly, people diagnosed with MS have left the country to be treated for CCSVI. Judging by the number of people who have had seriously good results, it is my guess that they also, were misdiagnosed. It is for damned sure the neuros never told us about the possibility of CCSVI. In fact, we have the MS Society's Dr. Freedman on video from a tv interview calling CCSVI a hoax, snake oil. Oh, yeah, and offering to do placebo testing - placebo results are something done for drugs, not for medical procedures. And this medical procedure - I have to wonder what kind of med school these guys went to to come up with statements like, "it is dangerous"? My next door neighbour gets venoplasty quite often - she has kidney disease. If it is safe for her and all those kidney patients, why is it so unsafe for MSers? The treatment of MSers in this country and in this province is a fraction of a degree better than that of Dr. Josef Rudolf Mengele - he of Nazi Germany infamy.(That by the way, is not intended as a compliment!) Off the top of my head -
He took vulnerable people and experimented on them. MS neuros take vulnerable people and experiment on them.
He killed people with his experiments. MS neuros have killed people with their experiments.
He lived high on the hog as long as the Nazis were in power. MS neuros are living high on the hog under Your leadership in this Province and under Leona's cross country.

To add  insult to injury, having spend personal money to get treatment that should be available  in this First World Country, MSers return home and are denied post procedure care. Now you are offering to fix that but you do not seem able to leave the insult out. Putting the same neuros on your "expert" panel is just a little more insult, rubbing salt in the wound. These dudes have been quite verbal about CCSVI and from a negative stance. This is not going to cut the mustard for most MSers. Looks like your logic flew south for the winter!!

You do not need neuro experts - if they knew anything about MS, we would not be in this situation in the first place. They have no idea what causes it, they have no idea how to help get rid of it,; they do not do what should be first step and that is to eliminate other possible conditions like lyme disease and they do not. They do not even seem to know what it is? Autoimmune is a word they coined to cover up their ignorance and then to make money. What you need for experts are some MS patients, an expert on Lyme Disease and the vascular people who are working in fact or at least following the lead of those in other countries. You have Dr. Sandy MacDonald right there in Toronto. Why did you leave him out? He has more knowledge about CCSVI/MS in his pinkie than all the MS neuros put together have in their entire bodies.

From where you sit - the only thing you personally need is a little logic. A little maternal instinct wouldn't hurt either. And the "real MS experts" - the patients.
From where I sit, it sure looks like you and Leona are both sleeping with the enemy, if you will pardon that oft used expression. Canadians used to brag about our Medical system. Now we are more and more coming to the opinion that everyone concerned is on the take from the Big Pharma. Are you on the take? That is not a very pleasant opinion to harbour. I am not the only one with that opinion. It is a political killer. But our opinion can be changed. Of course it would require some logic and some positive action on your part.

A tyrannical government is a tyrannical whether it is voted in or just takes it.

Those are my sincere opinions.

Karen Copeland

--
Shame on Canada!
http://its-time-to-slay-the-ms-dragons.blogspot.com/