Report card in Barrie

Well, I'm just back from the Barrie Vascular Imaging Clinic and have "passed": all my blood is flowing properly in both jugulars.  That's the good news and "bad" news all together.  It's good to know that my veins are not blocked and that any healing that can happen should now be happening.  So, at least, I can hope that my MS won't get worse and that the improvements I've seen won't go away.  On the other hand, while restenosis would have meant another trip to Poland (or somewhere), now I can no longer hope that another "liberation" could result in even more improvements. Plus my wife will have to find somewhere else to buy her amber jewelry!  :-)

Oh, in answer to your question, Shelli, I sent my request for an appointment in August. However, it seems that people who have already been liberated are getting earlier appointments... perhaps because Dr. McDonald is hoping to get permission to do procedures in the near future.

Another good article in the National Post: Nostalgia for the days when the patients were ignorant

A few mistakes, but otherwise a pretty good overview of the battle between the medical establishment and the general public over how medical decisions are made: http://fullcomment.nationalpost.com/2010/09/27/shaun-francis-the-government-wishes-for-the-days-when-the-sick-knew-nothing/.  Thanks to Shelley for pointing me to this link.

What will they find in Barrie?

In three days I get to find out if my jugulars are still OK, thanks to Dr. McDonald's clinic in Barrie. I'm not quite sure what I'm hoping they'll find!

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My cold has made me weak

I've had a bad cold almost all week that has made me feel weak and made some of my symptoms worse.  I've just about recovered now and things are just about back to (the new) normal, but I'm going to try to save my strength for my trip to Barrie.  I fly to Ottawa on Wednesday to meet my wife, then we drive to Barrie for my follow-up on Thursday.  Do I hope that they find restenosis in my right jugular so that I can look forward to more and continued improvements in my symptoms?  While, as Dr. Simka says. "Pathology is never good!", in this case a pathology discovered would mean hope for even better things for the future.  It would probably mean a return to Poland, though, since things are moving so slowly in Canada.

Why the fierce attacks on MS therapy?

The article doesn't recognize that there is a difference between angioplasty and venoplasty, but the main arguments still hold very well:

VICTORIA TIMES COLONIST SEPTEMBER 24, 2010
Jody Paterson: Why the fierce attacks on MS therapy?
http://www.timescolonist.com/opinion/Jody+Paterson+fierce+attacks+therapy/3572370/story.html

Dr. McDonald's interview on Zoomer radio

This is a good, informative interview with Dr. Sandy McDonald: Zoomer radio interview.

New Brunswick Tories promise funds for liberation treatments

In answer to my e-mail query concerning the party's position on CCSVI, the local Tory candidate indicated in an e-mail reply a few days ago that they were going to do this, though he made it sound like it would be a fund set up for other things, not just liberation treatments:

http://www.winnipegfreepress.com/canada/breakingnews/new-brunswick-tories-say-they-support-unproven-liberation-therapy-for-ms-103550534.html. Interesting... maybe asking the right questions during an election campaign can help sometimes.  No word from the Grits, yet, concerning their position.

Chris Alkenbrack's Speech on Parliament Hill

If you didn't see this on the CCSVI Facebook site, here it is in its entirety:

My name is Christopher Alkenbrack. My wife and I have lived with MS since April 29, 1992. We weren`t even married when I was diagnosed, and I thought that this uninvited guest in my life would prevent my beautiful girlfriend Claire from committing her life-long love to me....but when I tried to let her go the following afternoon on April 30, 1992, she looked into my teary eyes and said something like, “You`re not getting away that easily !” We`ll celebrate 18 years of marriage this October.

My kids, Nick and Leah, have always lived with MS. If you`ve been in MS circles for any length of time, you`ve probably heard the expression, “I have MS, but MS doesn`t have me !” Well, MS not only had its grip on me, but on every member of my family. I`m not being defeatist – just realistic. It would be a lie to say that my kids didn`t grow up with many disappointments in their lives because of my MS, that my wife didn`t marry someone who held her back from bigger and better dreams, but we`ve had an amazingly fulfilled life despite my battle with this illness.

Over the years, I went through the many phases of MS, vision problems, balance and gait problems, numbness, inability to concentrate, overwhelming fatigue, bladder issues, from cane to no cane, back to canes, in a wheelchair....basically I`ve seen most of the stages this disease had to offer me. Some people are worse, some people never progress. That`s the insidious nature of this disease – we just never know where tomorrow will lead us.

Over time I`ve seen many hopeful new avenues of research for MS. In fact, what was sure-fire science a decade ago, is now only a memory in the annals of medical history. Like all of you, I`ve heard so many theories about the origins of MS, and as each new wave came and went, I became more and more blasé and incredulous that there would ever be any new developments in my lifetime. I had become resigned to the fact that my kids, and eventually their children, would just have to get used to a dad in a wheelchair as my disease continued to progress.

Three months after my chemotherapy treatment for MS, on the afternoon of Sunday, November 22, 2009 my life took a turn that I did not expect. A phone call from an excited neighbour saying, “Christopher, did you see that W5 show last night about the new theory on MS ?” I responded with little interest, thinking in the back of my mind that it was just another “hoax” – a word that we`ve all seen and heard far too often from the medical community since that time. Later that afternoon, I received an e-mail from my sister Susan, and I watched a clip of the show. Disinterested, I thought, “yeah, yeah, another theory on MS....what a waste of my time”. It was only an hour or so later that I watched the clip a second time, and my daughter, Leah, started to cry. She wrapped her arms around me and said something like, “Dad, my two dreams are going to come true.....we`re going to Italy, and you`re going to get better !” In my mind I questioned her real intentions, as I thought that, “Shouldn`t she have said, - you`re going to get better before she mentioned a trip to Italy !”

Well, that week, I was interviewed on CBC, and the process to my treatment for a vascular condition named Chronic Cerebrospinal Venous Insufficiency was jumpstarted. On December 1st, 2009, I received my first FB message from a person I didn`t know, and that started our journey to “Liberation Therapy”. To make a very long story short, my wife and I travelled to Katowice, Poland with Francine Deshaies from Montréal, where Francine and I were treated on May 18, 2010 for venous flow problems. Our symptoms of MS improved, though we still have bad days. In my case, I feel like I`ve turned the clock backwards by 5 or 6 years on my disease progression, something that no MS therapy has been able to do up to this point.

Some call it the placebo effect, others say it`s a hoax. I prefer to describe the results in the words of my daughter who said to me 2 weeks ago, “Dad, do you remember when I was in Kindergarten and you were in the hospital all of the time ? Mom used to let me take days off school, and come to the hospital and be your ‘little nurse’. “ She continued on and said, “Now that you`ve been to Poland, you don`t need me to be your little nurse as much anymore....I can just be your daughter !” Some of the most profound truths are indeed spoken out of the mouths of children, those who grow up suffering silently, the voiceless victims of a disease that robs so many people and their families of their potential quality of life.

I want to tell you about a “friend” of mine named Marcel. Marcel lives in Amherst, Nova Scotia, and he told me recently that he is the only declared case of progressive relapsing MS at the Halifax Research clinic. Marcel has been told that there is no available treatment for him. Marcel has a 5 year life-sentence imposed on him. Marcel`s only offer from the MS clinic was a prescription of narcotics that would allow him to cope with the pain of his disease as he slowly wastes away into an abyss of despair. Marcel made a passionate plea for his life to the Canadian Minister of Health – not for himself, as he knows that he is going to die from MS. He made this plea for his 9 year-old daughter. In his letter he writes: “From onset, my prognosis was 5 years, as the internal organs are affected most, with death resulting from asphyxiation or dehydration. I have a steady rate of progression and expect to no longer walk by this spring. Death will follow shortly after.” It`s not true that people don`t die from MS. Unless we speak up today for the Marcel`s in this world, they will become like the people who die weekly from this disease and remain forever forgotten.

I remember a conversation that I had in the fall of 2007 with a friend who had MS. Scott reassured me we would indeed be the last generation of people to suffer from MS. Unfortunately, Scott didn`t live long enough to have his treatment, as his memorial service was held on May 5th, 2010, the day we had our first cross-Canada rally to promote CCSVI awareness to our governments.
En tant que patients, atteints de la sclérose en plaques, nous avons l’obligation de nous battre pour nos confrères et nos consoeurs qui souffrent quotidiennement avec cette maladie qui enlève tranquillement leur qualité de vie. C’est un mensonge d’affirmer que les gens ne meurent pas de la sclérose en plaques. Nous avons entendu tout à l’heure l’histoire de Marcel, qui attendra la mort malgré la demande écrite qu’il a déposé à notre Ministre fédérale de la santé. Ce traitement lui sera surement refusé, et il laissera une famille dans le deuil et une fillette de 9 ans qui posera toujours la question, « Pourquoi n’ont-ils pas voulu aider mon père avec une intervention si simple ? » Le corps médical qui refuse ce traitement aux patients atteints de la sclérose en plaques devra répondre à ces questions pendant les années à venir. Regarder dans le visage d’un enfant qui a déjà souffert toute sa vie avec un parent atteint de la sclérose en plaques et dire, « Nous ne savons pas si ce traitement pourrait lui aider….donc, on l’essaie pas, on le laisse mourir ». Faire une chose pareille, c’est manquer toute forme d’humanité. Mais c’est ce qui arrive à nos enfants.

Dr. Paolo Zamboni may not be a saint, but he indeed is a pioneer – a professor of Vascular Surgery who has allowed himself to think outside the paradigm that encloses the minds of many in the medical community. Dr. Zamboni has exposed a CCSVI iceberg – and the tip of this iceberg is slowly emerging. We must not let those who want to push it down under the surface of the water take control of this research. We don`t have all of the answers, but we have a glimpse of some of them. Researchers world-wide like Dr. Sandy McDonald, Dr. Salvatore Sclafani, Dr. Gary Siskin, Dr. Marian Simka, Dr. Michael Dake, Dr. David Hubbard, Dr. Mark Haacke (Pronounced Hay-Kee) and many others are underneath this iceberg, with the thousands of MS patients, trying to push it to the surface and expose it. Every effort that you make, will push forward the research. As a community that has learned to network together, we have thrust MS research to the forefront, and we will no longer take “NO, JUST WAIT A LITTLE LONGER” as an appropriate answer either for us or our friends who are getting sicker or dying each day from the effects of this disease.

It is discouraging to be in the middle of this turf war of some of the greatest medical minds. It is confusing and frustrating as patients with a chronic, life-long disease to see the division in the medical community, and how this separation creates unnecessary waits to potential treatment. It causes outrage to see an organization that exists for us that is not adequately defending this new avenue of research into CCSVI. I am livid when I see the wrongful manipulation of information that is taking place.

Nous ne devons jamais perdre espoir. Nous devons croire que nous serons la dernière génération de personnes atteintes de la sclérose en plaques.

We must not give up hope. We must continue to march forward. We must believe that we will be the last generation of people ever to hear those words that resound in our ears as a life-long sentence of uncertainty and despair, the words that I heard on that day back in April of 1992 - “Mr. Alkenbrack, you have Multiple Sclerosis”.

THROUGH FURTHER RESEARCH INTO THE AREA OF CHRONIC CEREBROSPINAL VENOUS INSUFFICIENCY, WE WILL INDEED END MS.

It`s not true that people don`t die from MS.
Ce n’est pas vrai que la sclérose en plaques ne tue pas !
Wake up Canada.
Réveillez-vous, Canada !
Wake up Multiple Sclerosis Society of Canada.
Réveillez-vous, Association canadienne de la sclérose en plaques.
Wake up honourable Health Minister.
Réveillez-vous, honorable ministre de la santé !

CBC The Current - Medical Orthodoxy

Except for the last sentence where the reporter says that some recent research seems to contradict Zamboni's findings (What research?  The projects using improper methods of investigation and evaluation conducted in Germany and Sweden and rushed to print?  Why ignore the Buffalo studies that confirm that CCSVI and MS definitely are related?  How about the continuing clinical work done in widespread parts of the world that are continuing to find over 90% incidence of CCSVI in MS patients), this is a pretty good story about how slow the medical establishment is to adopt, or even investigate, innovative treatments: http://podcast.cbc.ca/mp3/current_20100920_38433.mp3

CCSVI Tracking after Treatment

A group in the Netherlands has set up a site for the tracking of MS symptoms for people who have been treated for CCSVI or are scheduled to soon be treated: http://www.ccsvi-tracking.com/.  This is a great idea and people who are "liberated" or soon will be should register for the site and begin entering appropriate data.  In order to register, use the e-mail contact on that site.  I've started entering my info (it asks you for data concerning your symptoms from one month before liberation), though the site went down as I was entering information for the second month after treatment and now that it is up again I have to re-enter that.  However, once you enter your data for the first time (for one month before treatment), it remembers all your previous answers, so you need to only modify symptoms that change. 

Surprise! A Reasonable Article in the National Post

Here is a well-reasoned article in the National Post, which has been in the forefront of those saying that the whole CCSVI thing is a hoax or at least irrelevant to MS: http://www.nationalpost.com/Relief+their+dime/3537603/story.html.

Great meeting with my neuro today!

I always felt that I am lucky that my neuro and GP are more open-minded than the average medical professional... and my meeting with my neuro today reinforced that feeling.  Some of the things that I learned (or sometimes only felt was implied - I don't want to put her at odds with colleagues who are MS "experts"):

1. I am one of four "liberati" she has as patients.
2. In her assessment of my condition, she notices that I have had some improvements in my symptoms.  This is the first time that this has happened since I was diagnosed in 2004.
3. She agrees that, given the results of the long-term studies regarding CRAB drugs and my slightly elevated liver enzymes, I should stop taking Betaseron.
4. When she goes to Europe in October for a conference, she intends to get information from her colleagues regarding CCSVI, liberation (and also their experiences with LDN).
5. When she goes to Europe, she intends to set up a meeting with one of the Polish centres that are doing the liberation procedure.
6. With regard to things like LDN and CCSVI, it's not surprising that big research money is slow to come, because those aren't treatments that will produce profits for the biggest funders of medical research in North America, the drug companies.
7. Many neurologists are not against giving the CCSVI theory a good and fair investigation, but it is hard for an "ordinary" neuro to go up against (or even question) their colleagues who are the big-name MS neuros in Canada.
8. In New Brunswick, at least, open-minded neuros are quietly discussing the possibility of doing more regarding CCSVI (especially follow-up on "liberati") with interventional radiology and vascular specialists, but these others don't see that we have the technology or human resources in the province (except perhaps in Saint John) to do a credible job of that.

A really good meeting, and one that should give hope to others who have found their neuros less receptive, or at least openly so.

Dr Sclafani speaks out...

... on CCSVI, flawed German and Swedish research, and our MS Societies: http://www.corrieretandem.com/viewstory.php?storyid=10506&page=1

Aglukkaq’s message on CCSVI treatment: Was it media “misinformation” or Orwellian double speak?

In case you aren't following CCSVI Facebook and don't have a subscription to Maclean's, here is an interesting article for you: http://www2.macleans.ca/2010/09/15/aglukkaqs-message-on-ccsvi-treatment/.

Chris Alkenbrack's response to thge MSSC Press Release

Shelley sent me this link to Christopher Alkenbrack's response to Yves Savoie regarding the MS Society's press release concerning their Board reserving MSSC funds for CCSVI clinical trials when the research allows them to do so.  It's interesting reading:     http://www.facebook.com/topic.php?uid=110317832313822&topic=448

Dr. Siskin in Albany, NY

From another friend... Perhaps someone can straighten this out for me... and forgive me if it's because I missed it on TiMS or Facebook (I haven't been on them much lately).  I'd heard about Dr. Siskin a couple of months ago, then it seemed that someone else was taking appointments... now it seems that Dr. Siskin is back in business again.. or is this all just the same group?

Dr. Gary Siskin,

Albany Medical Center,

47 New Scotland Ave. MC-113,

Albany NY 12208

Phone 518-262-5149

Costs are:

Venogram - $3,000

Procedure - $2,000

He doesn't normally use stents, unless there are complications, and when he does, they are MRI friendly. :) They cost $2,000 each.

MS Society of Canada commits $1 million for CCSVI clinical trial

My friend Shelley just sent me this press release:

Toronto, Ontario - September 16, 2010 – The Multiple Sclerosis Society of Canada board of directors unanimously approved a motion to reserve $1 million for a chronic cerebrospinal venous insufficiency (CCSVI) and MS pan-Canadian therapeutic clinical trial. The funding will be set aside so that an immediate infusion of funding will be available when such a trial is developed and approved.

“We want to hit the ground running when a therapeutic trial is warranted and approved,” says Yves Savoie, president and CEO of the MS Society. “Ensuring funds are available to support a Canadian trial will accelerate our ability to get definitive answers to the questions people touched by MS urgently seek.”

The MS Society of Canada hopes to work with the provinces and the federal government to secure all of the funding for a therapeutic clinical trial. At the recent health ministers’ meeting in Newfoundland, provinces and territories collectively stated that the issue of CCSVI is a top priority.

“We applaud the spirit of cooperation that the federal, provincial and territorial governments have shown in moving CCSVI to the forefront of country’s health agenda,” says Savoie. “The MS Society of Canada is ready to play a central role in preparing for and funding a scientifically rigorous pan-Canadian therapeutic clinical trial to test CCSVI.”

The MS Society has advocated for more research since the CCSVI theory became widely publicized in the fall of 2009.  Already, $2.4 million has been committed by the MS Society of Canada and the National MS Society (USA) to support seven research projects focusing on CCSVI and its relationship to MS.

Earlier this summer, the Federal Minister of Health accepted the Canadian Institutes of Health Research’s recommendation to create an expert scientific working group to monitor the results of the studies already underway. The experts will analyze the evidence about the definition and nature of venous blockages and their relationship with MS, since this information will be central to obtaining ethical approval to enrol participants in a trial.

“The MS Society is committed to doing all that it can to ensure that an eventual trial will be rigorously designed and successfully implemented,” concludes Savoie.  “We will continue to expedite the research process so that the treatment potential of CCSVI as it relates to MS can be understood as quickly as possible. “

 Then she asked what I thought and my advice for her as she goes into the MS Society of Canada's CCSVI Working Group meeting in Toronto this coming Monday.  My response was:

Well, it is (or could be) good news, Shelley… though we have to make sure that the research leading up to it is properly done… and that’s the part I’m not too sure of.  You know, in preparation for your meeting, if you have time you should do a little research and/or talk to Joan Beal to find out what are considered to be the shortcomings of the 2.4 million that was announced previously… maybe even put up a public message on Joan’s CCSVI facebook page and ask people for their quick thoughts (after explaining what you are doing).  If we had your working group saying that the research previously announced is flawed or inadequate, that would put a lot of pressure on the MSSC to do the right thing.

Do any of my other readers have thoughts, information or advice for Shelley?

But some people do...

Another liberated person from Saskatchewan has had more success, and comments on others who haven't:

I agree, Ted. It is important to hear all sides. I am wondering if they did the necessary work in the Azygous veins when we were there. Raj also has had trouble with a set back. I am still doing well and with seeing a neuro physiotherapist doing better everyday. My fatigue and heat intolerance are totally gone. If I have a really taxing day it only takes me one day to get recharged instead of 2 weeks. I hope that we pioneers in this procedure are able to be of some help for future procedures.

Disputed MS theory tops health agenda

It's great that they're all talking about it:

http://www.cbc.ca/health/story/2010/09/14/ms-zamboni-ccsvi-health-ministers-aglukkaq.html

But will it lead to clinical trials in the near future... I'm worried that the current research that "will produce results in the next few months" has all been funded by the MSSC and seems not to have gone to anybody that really knows anything about CCSVI.  Am I being paranoid?

And why can't Canadians be tested and, if appropriate, treated in Canada (even on their own dime) for a blood flow problem just because they have MS?  At least a few of the Health Ministers are using some common sense (finally): start following up on the people who have already been overseas.

Not everyone improves

Here is an excerpt from a message sent to me by someone who was liberated in Poland a few days before me:

I have not had any improvements and I can say that I have definitely had my MS progress. My walking is much poorer, my foot drop more pronounced, I fatigue much faster. On the other hand, I was getting worse when I went to Katowice and I think it would have been unreasonable to expect the procedure to put the brakes on and reverse my decline.

We had a long hot summer in Montreal, a very hard one for MSers. Now that the weather is cooling, I am feeling much better and there are days when I can walk much further. I very rarely use a cane (almost never) but once in awhile I put on my AFO and it helps with stamina.

I am feeling somewhat ambivalent about the procedure. I don't regret having it done, but I am not sure about recommending it to others anymore. I base this not just on my experience, but on what many others have voiced as well. Much to learn. 

I'll be back in Katowice in October . I don't know what to expect - problems with my stent?... restonosed right jugular?... all ok?... If I am offered a stent in my right jugular, I have no idea right now if I would agree to it.

In the meantime - I am a fervent believer that there needs to be more research, clinical trials, and sooner not later. I am thoroughly disappointed in the Canadian MS Society, the Canadian Health Minister, and the countless neurologists who are not prepared to act as the doctors they trained to be.

Good news for CCSVI supporters

CBC has two stories about CCSVI: An update to the story about Ginger McQueen's liberation (http://www.cbc.ca/health/story/2010/09/13/multiple-sclerosis-ccsvi-ginger-macqueen.html) and details about Newfoundland and Labrador's support for research into CCSVI, beginning with observations of people whyo have been liberated overseas (http://www.cbc.ca/health/story/2010/09/13/health-ms-treatment-ministers-meeting.html).  At last, someone is doing something so obvious that it throws into question the seriousness of the research funding announced by the MS Society of Canada.  Thanks to Mark Lane for doing his part in putting this forward to the Health Ministers.

Physiotherapist's advice: Start using a cane again

Today I learned that the way I am walking right now (hyperflexing my left knee in to compensate for my continuing toe drop) will likely injure the ligaments in my left knee over the long term.  So, even though my walking is somewhat better, I'm going to have to go back to using a cane for any longer walking in order to train my knee not to hyperflex. Unfortunately, especially at first, my walking will look even worse while I re-train my knee.  ....*sigh*  I am again going to try the Walk-Aide system in a week or two, so if I do eventually buy it, I may then reduce my cane use at that time.

Health ministers to weigh MS treatment issues

Let's hope that good decisions are made today: http://www.cbc.ca/canada/story/2010/09/13/health-ms-treatment-ministers-meeting.html.

White Coat, Black Art Story on the CCSVI Controversy

There's a pretty good show on the CCSVI controversy in this week's episode of the Dr. Brian Goldman program "White Coat, Black Art": http://www.cbc.ca/whitecoat/.  There were some errors or half-truths that were not corrected or challenged (such a few by our friend Dr. Jock Murray), but overall the show does a good job of providing a balanced and comprehensive view of the issue.

Finnish Friend Re-fixed

A Finnish friend, who was treated in Poland on the same day as I was (in April), has restenosed and was re-treated in Katowice yesterday.  She had this to say:

I had the procedure yesterday, and they ballooned my left jugular again and put a stent on my azygos (it had collapsed).  They have a neurologist to check you before the procedure, and 30 min presentation on CCSVI the day before. Mary will be glad to hear that the English-Polish translation paper is given with the info package. Then this morning they do the doppler again to ensure that the veins are open.

I talked with the doctor, who mentioned that  last week they had had a patient in a wheelchair that could walk with a cane a couple of days after the procedure. He explained this saying that her MS was caused mainly by the CCSVI, while MS= unknown factor X + CCSVI.  So, "miracles" can only happen if the main cause is CCSVI, otherwise the benefits are smaller. That's why people benefit differently. Now we have to find the X. Hahaa - the whole mystery of MS hasn't been solved yet.  For me, the walking and bladder problems followed the blockage of azygos, now it will be interesting to see whether they will improve with the stenting. Also, I thought I'll try to test my blood for any heavy metals, such as mercury, and see what that brings. My personal quest for the elusive X...

I hope that you will not have to come to Poland for a new procedure, because of the cost. It would certainly be better done in Canada, but  the good thing with restenosis is that after second ballooning, they veins will stay open (third ballooning seems to be rare).

Dr. McDonald: Definitely not in it for the money

If anyone wishes to have a post-liberation follow-up done in Barrie, please contact me and I'll send your information on to them, as I've done for others.  If you have not yet been liberated, you'll need to be referred to them directly by your doctor.

Now, to me, the real problem is that CCSVI assessment service is not available to MSers through our own medical system, simply because we are MSers!

Missing our chance during the NB Election

With two and a half weeks to go to election day, CCSVI research and treatment has not even come up as an issue during the current NB election.  If you are a New Brunswicker, have you contacted you local candidates to urge them to support clinical trials?  Time is running out...

An Open Letter to the Health Minister from Dr. Brandes

Another good article/letter by Dr. Brandes: http://healthblog.ctv.ca/post/An-open-letter-to-the-federal-health-minister-about-CCSVI.aspx

Christopher Alkenbrack' letter to the Health Minister

Here is a letter from Chris to the Health Minister, explaining why he feels she made a mistake in accepting recommendations from an "expert panel" with many members who had conflicts of interest:

The Honourable Leona Aglukkaq, P.C., M.P.
Health Canada
Brooke Claxton Building, Tunney's Pasture
Postal Locator: 0906C
Ottawa, Ontario K1A 0K9

RE: THE CANADIAN GOVERNMENT`S DECISION TO DENY FUNDING FOR PAN CANADIAN TRIALS OF CCSVI

Honourable Aglukkaq,

I am writing this letter as a concerned Canadian who was surprised by the recent announcement made by the government of Canada to the fact that you have accepted the recommendations set forth by the CIHR – MS Society of Canada Joint Committee on the establishment of pan-Canadian research trials into the theory of chronic cerebrospinal venous insufficiency.

There are several points that I would like to bring to your attention that draw into question the integrity of the joint committee, and the motives of the recommendations that were put forth not to establish clinical trials.

Firstly, we know from a Canadian news report, that Dr. Alain Beaudet, the chair of the Canadian Institutes for Health Research, has been quoted as saying that anyone remotely interested in CCSVI research was “intentionally” excluded from this committee. This report comes from an interview with Dr. Sandy McDonald on Canada A.M. on Thursday, morning, September 2, 2010. In a conversation with Dr. Beaudet himself, Dr. McDonald says, and I quote: “I (Sandy McDonald) was told yesterday by Alain Beaudet myself that anybody that expressed public interest in support of CCSVI was excluded from the committee that was actually addressing the issue. That seems fatally flawed to me.”

If this information is true, it is definitely non compliant with several policies, procedures and strategic orientations that have been approved by the Canadian Institutes of Health Research and the Federal Government of Canada. There are safeguards to protect the integrity of such committees from making biased decisions in a context of conflict of interest that could impact the health of Canadians.

I would like to address some of these issues, so I would kindly ask that you read through this letter with the utmost attention. I will be referring to several documents, and providing internet links to these same documents that will prove the fact that this committee was biased in making their decision.

Before I can move ahead, I need to explain why I believe that the formation of this committee of experts has made a flawed decision. First of all, on May 5, 2010, the MS Society published a press release that funds of $ 10 million would be requested to study the question of CCSVI and its possible links to Multiple Sclerosis. http://mssociety.ca/en/releases/nr_20100505.htm Mr. Yves Savoie, the president and CEO of the Ontario Division of the MS Society said in this press release ““It is obvious that the relationship between CCSVI and MS requires further investigation,” and “This funding request will give researchers the tools to examine both the prevalence of this condition and the potential benefits of treating people with it.”

The goal of this funding was to allow CCSVI research to move ahead more quickly, which in itself is honourable, as it could help to improve the lives of Canadians living with this chronic debilitating disease. However, through documents obtained from the MS Society of Canada, I call into question their ethics in this area of research. Several members of their own Medical Advisory Board http://mssociety.ca/en/research/researchfunding.htm have made statements to their patients and to the press that this whole new approach to MS is a “hoax” recommending that their patients not even seek diagnosis or treatment for venous conditions. If there is no link to MS and vascular issues, then why did Dr. Ruth Ann Marie, director of the Multiple Sclerosis Clinic in Winnipeg recently publish, in a peer-reviewed journal, an article entitled “Vascular comorbidity is associated with more rapid disability progression in multiple sclerosis.” ? http://www.ncbi.nlm.nih.gov/pubmed/20350978 If indeed, this hypothesis is true, then patients with Multiple Sclerosis need to be checked and treated immediately for these vascular comorbidities, such as chronic cerebrospinal venous insufficiency. For your information, this condition was accepted by a panel of experts from 47 different countries as a condition that preceeds the onset of MS http://www.fondazionehilarescere.org/pdf/consensus-ANGY.pdf. Several of the studies cited in the bibliography of the Summary Report of the CIHR/MS Society of Canada meeting from August 26, 2010 need clarification, as they are interpreted differently from one doctor to another. For example the German studies that were quoted, according to Dr. Mark Haacke from McMaster University in Hamilton, Ontario, actually prove the existence of CCSVI, as Dr. Haacke stated in a symposium in New York on July 26, 2010, that the neurologists doing to study did not realise that this actually proves quite the opposite as what the study stated.

The motives of the Expert panel used to provide information for your decision must be questioned, as there is clear evidence that many of the members of the Medical Advisory Committee at the Multiple Sclerosis Society of Canada have indeed been awarded large sums of grant money to do their own research. Moreover, many of the medical experts have been publically outspoken against this theory and its links to MS. These researchers have received millions of dollars in grants from the Society which they serve, and who serve me, as a patient with MS since 1992. Is it not a clear conflict of interest to receive grants for your own personal studies or the studies which you supervise ? In fact, 8 (eight) member of the Expert panel have received funding from the Multiple Sclerosis Society of Canada for their own research, and 2 of those members have received funding for research projects from the MS Society of Canada to study CCSVI and its link to MS. Yet we know from Dr. Alain Beaudet`s testimony to Dr. Sandy McDonald that any researchers that expressed interest into the area of CCSVI were excluded from the Panel of Experts who made recommendations to the Canadian Government.

The Government of Canada has safeguards put in place to avoid conflict of interest. See policy on Values and Ethics Code for the Public Service http://www.tbs-sct.gc.ca/pubs_pol/hrpubs/tb_851/vec-cve1-eng.asp. It baffles me as a Canadian and as a patient with Multiple Sclerosis to see a partnership with the Multiple Sclerosis Society of Canada that clearly does not uphold these same values and code of ethics. I find it more astounding that you, Honourable Aglukkaq, based your announcement of August 31, solely on this panel of experts, whose members are clearly in conflict of interest in this matter. http://www.cihr-irsc.gc.ca/e/42382.html

If indeed the CIHR believes in its mission on Strategy on Patient-Oriented Research wherein it is stated “The overarching goal of the Strategy on Patient-Oriented Research (SPOR) is to translate research results into improved health outcomes for Canadians. For patients, this means receiving better diagnoses, treatments and outcomes in a timely manner.” http://www.cihr-irsc.gc.ca/e/41204.html than research into Chronic Cerebrospinal Venous Insufficiency must go forth at a more rapid pace in Canada. As a Canadian, I am proud to have access to free medical care. Unfortunately, this was denied to me as an MS patient when I was diagnosed with Chronic Cerebrospinal Venous Insufficiency. I had to withdraw 80% of my RRSP savings to pay for my own treatment overseas as the medical community in Canada will not endorse the theory, the diagnosis or the treatment of this condition. If you are to be true to the mission of the CIHR, and their strategy orientation, then I humbly recommend that you convene another committee of experts that will look into this question once again.
One other area of strategic development that is interesting to me as a Canadian and as a patient who has lived with Multiple Sclerosis for over 18 years, is the concept of citizen engagement http://www.cihr-irsc.gc.ca/e/41592.html. As stated in the CIHR strategy, this concept is defined as, “... the meaningful involvement of individual citizens in policy or program development. To put it simply, citizens are "engaged" when they play an active role in defining issues, considering solutions, and identifying resources or priorities for action. This "meaningful involvement" can take place at a variety of stages in the research, planning, or implementation phases of a project.”

As an engaged citizen, I was forced to take my health into my own hands, as I was refused diagnosis and treatment of a condition that has been defined by 47 countries in their consensus document that I referred to earlier.

I commend you on your job as Canadian Health Minister, and your role to help Canadians. I trust that you will investigate the following issues, or charge someone under your authority to do so.

1. The apparent conflict of interest that exists with funding at the MS Society of Canada and their influential role in government decisions not to fund pan-Canadian clinical trials (11 of of 13 members of the present Medical Advisory Committee have been awarded funding grants, sometimes in the millions of dollars – See Annex 1);
2. The possibility that members of the CIHR committee that was formed and presided by Dr. Alain Beaudet were biased in their decision making and the recommendations that were formulated as the basis for your announcement to the Canadian public not to approve clinical trials;
3. The role of the MS Society in protecting the rights of all Canadians living with this insidious disease that costs tax payers billions of dollars annually.

If indeed some or all of these allegations are founded, further to a full investigation, I make the following recommendations :

1. That a new unbiased committee be formed to once again look at the possibility of doing pan-Canadian clinical trials that offer actual treatment for venous insufficiency to patients who suffer with Chronic Cerebrospinal Venous Insufficiency. Any member of the Medical Advisory Committee past or present, who has been a recipient of a substantial grant from the Multiple Sclerosis Society of Canada, be immediately removed from this committee so as to have an unbiased, solid committee with no preconceived ideas against this theory.
2. That an independent, government-appointed panel of experts assess each member on this committee to determine their level of involvement into researching and funding in the Research of the MS Society, past or present.
3. I would also implore Health Canada to launch an investigation into the funding practices of the Multiple Sclerosis Society of Canada, since there are clearly several members in conflict of interest. (See Annex 1).

I submit this respectfully, honourable Aglukkaq, and trust that you will follow up on the information that I have provided in this letter.

Most sincerely,


Christopher Alkenbrack

C.C. The Canadian Prime Minister, Several members of Parliament interested in our cause, Several members of the press


Annex 1

MEMBERS OF THE MEDICAL ADVISORY COMMITTE AT THE MS SOCIETY OF CANADA

NAME AND LOCATION
RESEARCH FUNDING GRANTS
SINCE 2003

Chair
Dr. V. Wee Yong, Calgary, Alberta PERSONAL RESEARCH GRANTS: $ 657,203
GRANTS FOR STUDENTS: $ 351,000
UNSPECIFIED GRANTS: 7 in total

Dr. Virender Bhan, Halifax, Nova Scotia None recorded in MS Society Documents

Dr. Joan Boggs, Toronto, Ontario
PERSONAL RESEARCH GRANTS: $ 818,677
GRANTS FOR STUDENTS: $ 195,000
UNSPECIFIED GRANTS: 5 in total

Dr. Anthony Feinstein, Toronto, Ontario
PERSONAL RESEARCH GRANTS: $ 144,340
UNSPECIFIED GRANTS: 1 in total

Dr. Mark S. Freedman, Ottawa, Ontario
PERSONAL RESEARCH GRANTS: $ 6,731,165
GRANTS FOR STUDENTS: $ 114,917
UNSPECIFIED GRANTS: 4 in total

Dr. Rashmi Kothary, Ottawa, Ontario
PERSONAL RESEARCH GRANTS: $ 756,580
GRANTS FOR STUDENTS: $ 78,000
UNSPECIFIED GRANTS: 6 in total

Dr. Luanne Metz, Calgary, Alberta
PERSONAL RESEARCH GRANTS: $ 4,047,255
GRANTS FOR STUDENTS: $ 158,582
UNSPECIFIED GRANTS: 2 in total

Dr. Trevor Owens, Denmark
PERSONAL RESEARCH GRANTS: $ 640,562
GRANTS FOR STUDENTS: $ 350,000
UNSPECIFIED GRANTS: 1 in total

Dr. Christina Wolfson, Montreal, Quebec
GRANTS FOR STUDENTS: $ 40,000

Dr. John Richert, National MS Society Liaison (USA) None recorded in MS Society documents.

Dr. Jack P. Antel, Montreal, Quebec (ex-officio)
PERSONAL RESEARCH GRANTS: $ 6,966,651
GRANTS FOR STUDENTS: $ 118,000
UNSPECIFIED GRANTS: 7 in total

Dr. Paul O'Connor, Scientific and Clinical Advisor (ex-officio)
PERSONAL RESEARCH GRANTS: $ 247,940

Fatigue again?

For the first time since being liberated, I've started to feel tired again in the afternoon and early evening... not as much as the worst of times before the procedure, but enough to make me realize how much better things had gotten.  I wonder if it's restenosis of the right jugular, the one that wasn't stented?  I guess I'll find out at my follow-up in Barrie in a few weeks.

Best place to get CCSVI Testing & Procedure done

Sharda, that depends upon your location and situation.  Send me an e-mail and we can discuss the alternatives.

Your Testimonials - Doing Double Duty

Here is a different request from my (very active) friend Shelley, this time for testimonials from Canadians who have had been "liberated":

If you could put out a request on your blog for anyone interested in providing me with a CCSVI treatment testimonial and/or a statement or a comment that anyone would like relayed to the MS Society board members, I will happily bring along such documentation with me on September 20th when I attend the first CCSVI Working Group meeting as a CCSVI advocate. They can email me at shelley@zingsphere.com .

As explained to me, the CCSVI Working Group will be comprised of 4 CCSVI advocates, 4 members of the National Board of Directors, and 4 representatives of the medical community (an IR, a vascular surgeon, a neurologist and one other doctor). I do not know the names of any of the other advocates nor do I know which physicians will be partaking in this working group.

Mark Lane has most graciously agreed to share with me testimonials he has received but will not be able to do so until after September 15th which won’t leave a lot of time since I will be leaving on the 19th for Toronto. I told him that I would ask you to put out this request on your blog and then he and I can go through our respective lists and whosever testimonial that I do not have which he does, he will then ask permission of that person to share with me.

In an email I received from Deanna Groetzinger, VP – Government Relations and Policy of the MS Society, she explains the CCSVI Working Group as follows: “The working group has been formed to provide advice and recommendations concerning chronic cerebro-spinal venous insufficiency with the goal of positively impacting the Multiple Sclerosis Society of Canada’s approach to research, treatment and advocacy activities. The working group is to identify issues and provide advice and recommendations to the National Board relating to the monitoring of evolving peer-reviewed, scientific evidence regarding CCSVI and treatment, including the progress of MS Society CCSVI clinical and other CCSVI studies; the position of the MS Society with regard to CCSVI especially concerning guidance to people with MS; the type of information and approach the MS Society shall take regarding CCSVI vis-à-vis the federal and provincial governments and professional associations of physicians.”

Thanks Ted!

Note that, even if you have already replied to a similar request from Mark Lane (for another purpose), please send a copy to Shelley now so that she has time to prepare the information for the first meeting.

Petitition to Minister Leona Aglukkaq

My friend Shelley has asked for our help to get 10,000 signatures for the following petition:

The Liberation Treatment is potentially a ground breaking discovery for the treatment of Multiple Sclerosis. In November 2009, Italian researcher Dr. Paolo Zamboni, made headlines worldwide with his study of  chronic cerebro-spinal venous insufficiency (CCSVI). The MS community responded with great hope, excitement and a call for immediate action.   Unfortunately, on Tuesday August 31 2010 the Canadian government decided not to fund a clinical trial of the Liberation Treatment in Canada.  As a Canadian citizen and once a supporter of the MS society, I wish to express my interest in seeing our country act as a leader in helping find a cure for Multiple Sclerosis.  This is an alternative therapy, that has inspired hundreds of thousands of people afflicted with the disease, all of whom deserve the opportunity to pursue that hope.

Go to http://www.thepetitionsite.com/1/help-cure-ms/ if you wish to sign the petition.  I signed it with a comment indicating that I believed the decision was based upon a poor recommendation from "experts" with no knowledge of CCSVI, many of whom have conflicts of interest.

So I think I can dance... sort of

Tonight I attended a Haitian wedding (in Charlo, New Brunswick... go figure).  Though I tried to dance a waltz (unsuccessfully) at a Ukrainian anniversary last week, tonight I danced a merengue with my wife... well, sort of... as much as I could do with a draggy left foot.  Still, it was the first dancing I've done in two years. Unfortunately, my wife still hasn't learned to keep her toes from under my feet, but I'm sure she'll learn some day... :-)

Bottom line so far

Mark Lane (mark@marklane.ca) is collecting CCSVI treatment testimonials for presentation to a meeting of Health Ministers in Saint John's later this month.  I sent him a page of impacts (based upon my TiMS tracking thread) and ended with this:

Bottom line so far:  My quality of life has improved significantly since I had the procedure.  Last fall, there were many things (sailing, kayaking, biking) that my wife and I thought we would never be able to do again together.  The way things were progressing, it looked like I would be in a wheelchair this year and that I would have to retire from teaching (our old campus is NOT wheelchair-friendly, and the fatigue would have stopped me in any case).  But I am teaching again this year, and am re-thinking my retirement plans.

Four months in and no more improvements

No more improvements since June 29th.  In fact, my mobility sometimes seems to have regressed, though with the day-to-day and hour-to-hour changes that I have, it's really hard to tell.  I still don't use a cane (except in airports), so it can't have regressed much.

Conflict of Interest in CIHR

Thanks to Joan Beal, here is some interesting information that may shed some light on CIHR's recommendation to, basically, do nothing about clinical trials for CCSVI treatment in Canada: http://www.facebook.com/pages/CCSVI-in-Multiple-Sclerosis/110796282297#!/notes/ccsvi-in-multiple-sclerosis/dr-alain-beaudet-and-the-pharmaceutical-industy-what-you-need-to-know/430286607210.  She makes a good case for concern that some of the head folks in CIHR are a little too cozy with major drug companies.  In that light, the CIHR recommendation seems to make more sense in a sinister kind of way... certainly it would appear to constitute a conflict of interest.  This would make a great story for a muckraker... any journalists out there that aren't afraid to take this on?

CCSVI Presentation by Dr. Torrance Andrews

This is a very good video (in two parts) that explains CCSVI and why we should be doing "liberation" treatments here now: http://www.youtube.com/watch?v=uAlbdW2aiYs&feature=channel.  It also provides further information concerning Dr. Zamboni's study that I didn't know or forgot: it was a blinded study, and about 300 people were involved, not just the 65 that is so often quoted!  Too bad the idiots on the CIHR "experts" panel didn't bother to do enough research to get their facts straight!  My guess is that they were "sold" their consensus and weren't given time to check the facts.  Even so, it doesn't say much for their scientific integrity that they allowed themselves to go along with that.  Shame on them!

MS therapy trial has N.L. minister's support

So despite the recommendations of the CIHR's "expert panel", the health minister for Newfoundland and Labrador feels that there is too much anecdotal evidence of the value of "liberation" to delay clinical trials: http://www.cbc.ca/canada/newfoundland-labrador/story/2010/09/01/kennedy-ms-clinical-trials-901.html#ixzz0yHOv48Oi

As well, in the same story, a local MS Society of Canada volunteer has decided that he can no longer support that group:

Meanwhile, a local activist who helped persuade Kennedy to support automatic clinical trials has decided to quit his leadership role within the MS Society of Canada. Ted Warren, who led the society's St. John's-Mount Pearl chapter, said he expects others to split with the group over its opposition to starting clinical trials. "I think it's unforgivable," Warren said Wednesday. He stepped down "in protest as soon as I got the news yesterday [about] the position that the MS Society has taken."

I think that there are many others who will do the same.  Can the MSSC be saved... and should it be saved? A non-MSer friend of mine who is following this story with great interest believes that we should identify people within the MSSC who are not so hard-headed and work with them to completely "re-engineer" the organization. Others believe that it is broken beyond repair.  What do you think?