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