New MS Treatment?

[Fritzthecat]

Good Luck, I hope it works for you!

I second that!

With all the "experts" trying to debunk it, it really makes you wonder...

The problem is the "experts" don't offer any sort of argument other than rubbish like "It's bogus!" "It's placebo effect!" they offer NO scientific proof or rationale why they don't believe it is a valid treatment.
Maybe if we looked at their bank statements...

[peaceseeker]

Three more sleeps and I leave Kelowna for Bulgaria...when I get back I'm going to have a big CCSVI party.....call the papers.....

I can't wait to hear how things are going in Villagemaid's world...so excited!

[Queen K]

Three more sleeps and I leave Kelowna for Bulgaria...when I get back I'm going to have a big CCSVI party.....call the papers.....

I can't wait to hear how things are going in Villagemaid's world...so excited!

Me too. I believe the MS Society of Canada are going to start looking like quacks from the Dark Ages, and soon.

[Queen K]

I hope RAVEN sees this thread. She has the most uplifting story Peaceseeker, gives you and your sister hope.

I too am anxiously awaiting Villagemaid's story.

[peaceseeker]

I hope RAVEN sees this thread. She has the most uplifting story Peaceseeker, gives you and your sister hope.

I too am anxiously awaiting Villagemaid's story.

The only posts regarding Raven (now shorty4630) that I am aware of are these...do you know of anything further?

viewtopic.php?f=4&t=24250#p690767

viewtopic.php?f=4&t=22579&start=15#p643526

Sigh, how wrong I was in thinking the procedure would be offered sooner than some might expect...

[Queen K]

Okay, I brought it over from the Kelowna thread: May I present, proof for hope:



* Report this post
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Re: CCSVI - what do you know?

Postby shorty4630 » Yesterday, 6:48 pm
Hi my name is Raven Shackleton lived in kelowna all my life. I got diagnosed with MS january 2006 at a age of 22, 6 months after i got married ;0( June 22 i had my liiberation treatment in costa rica. June 22 i had my surgery to unblock my veins i was blocked in 4 area's. left and right jugular, my azygos and close to my heart. I have had many improvements my feet were always cold and swollen, now they are warm. My speech has improved drastically, i use to slur my words, not anymore. my mind is a lot quicker and my energy level is fantastic. I am still in my chair because i would like to prevent falling. I can walk in someone's hand but not for too long though. my hands are more steady and i can cut my own meat. sleeping is great my brain used to work overtime and not allow me to sleep. I dont understand why Canada would force people with ms have to travel over seas to get the surgery, dont they know the trip alone would be hard on us already? us ms'ers know this is not a cure by a long shot, but for us it is improving our quality of life. I think we are entitled to it, nowadays my moods have been uplifting, which means life is not as stressed as it was before, So PLEASE CANADA we know its not a cure better than pumping our systems full of poison. thank u for listening
RAVEN SHACKLETON

[Queen K]

Peaceseeker, see what I mean?

[peaceseeker]

Peaceseeker, see what I mean?

I sure do!

[signgrrrl]

http://www.facebook.com/photo.php?pid=3 ... 0210385616

Hope this works, a link to the CCSVI facebook and my friend Kari's story about her treatment in India. She can feel her toes for the first time in years!

[signgrrrl]

Sorry, it went to the next picture, her story is the one previous.

[peaceseeker]

http://www.facebook.com/photo.php?pid=329119&id=129690210385616

Hope this works, a link to the CCSVI facebook and my friend Kari's story about her treatment in India. She can feel her toes for the first time in years!

Thanks for posting signgrrrl. Yahooooo! Viva la liberation!

http://www.facebook.com/photo.php?pid=3 ... 2051777765

[peaceseeker]

A must read for those concerned. Kudos to you, Christopher!

As mentioned, the MS Society does not have the welfare of pwMS in its best interest. Please stop supporting this bogus organization.


http://www.facebook.com/topic.php?uid=1 ... &topic=425
Christopher

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/pd ... s-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/hrpub ... e1-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

[Queen K]

Anxiously awaiting word from Villagemaid. I want to know the improvements versus the "hoax theory' as Raven found out, the liberation treatment improves one's life tremendously.

[peaceseeker]

An In-Depth Analysis of the “Summary Report - CIHR
and MS Society of Canada Joint Invitational Meeting on
Multiple Sclerosis Research
https://docs.google.com/viewer?a=v&pid= ... 2qdw&pli=1

Dr. Ashton Embry, Direct-MS,
September 10, 2010
Executive Summary

A detailed analysis of the recently released CIHR/MSSOC Report on CCSVI and Multiple Sclerosis (Beaudet Report) has found that the report contains many scientific errors and unsupported opinions. The serious scientific failings which permeate the Beaudet Report are painstakingly documented in over nine pages of text in the In-Depth Analysis.

An even larger and more serious problem with the Beaudet Report are the overt and most disconcerting ethical breeches. These ethical breeches include:

1. The committee organizers used an incredibly biased committee member selection process such that that no scientists or practitioners with expertise, knowledge and/or experience with CCSVI and MS were allowed on the Beaudet Committee.

2. The majority of the Committee members (13/23) have an obvious conflict of interest when it comes to evaluating the need for a clinical trial to test the efficacy of a non-drug therapy for MS such as CCSVI treatment. Such a conflict of interest takes the form of close ties, often financial, with the pharmaceutical companies that manufacture and market the drugs that are currently used for MS. Such ties are meticulously documented in the Appendix of the In-Depth Analysis.

3. The conflicts of interest were not declared or even alluded to in the Beaudet Report.

4. The committee members with a conflict of interest did not recuse themselves when it became obvious that CCSVI and the question of a CCSVI treatment clinical trial were going to dominate the discussions by the Committee. In fact, the compromised individuals strongly influenced the final recommendations of the committee.

The highly flawed science, in combination with the serious ethical breeches of the Beaudet Report, completely invalidates its recommendations. Given the above the Federal Health Ministry needs to:

1. Convene a new expert committee to examine and make recommendations on the need for a clinical trial to test the efficacy of CCSVI treatment for MS. The committee should be populated by both scientists and practitioners with expertise and experience with CCSVI and MS and scientists with experience in related topics such as venous angioplasty in other conditions, the neurovascular system, neuro-imaging and MS disease pathogenesis. Every effort should be made to exclude individuals with a clear conflict of interest related to past and/or present relationships with the pharmaceutical industry.

2. Launch an investigation into the ethical breeches of the Beaudet Report and determine how such a scientifically inappropriate and ethically challenged committee came into existence in the first place.

3. Review the appropriateness of having Alain Beaudet lead the Canadian Institutes of Health Research. Canadians need to have confidence in their health leaders and Beaudet’s credibility has been destroyed by the scientific failings and the ethical breeches of the committee he formed and
the report he wrote on a most important health issue.


Full report found here...
https://docs.google.com/viewer?a=v&pid= ... DwlKr6se0w

[peaceseeker]

I wonder if they received a response?...

Letter to the Minister of Health regarding MS and CCSVI- hope we get a response to this one ….
http://carolynbennett.liberal.ca/blog/l ... and-ccsvi/

Posted on 20. Aug, 2010 in Blog

Dear Minister Aglukkaq,

Further to our letter of May 6th, 2010, we are once again writing to you to ask for federal leadership, regarding Multiple Sclerosis (MS) and chronic cerebrospinal venous insufficiency (CCSVI). Specifically, we are requesting that CCSVI be on the agenda of the Health Ministers’ meeting in St. John’s, Newfoundland on September 13th and 14th, 2010, and that both Dr Sandy MacDonald–the only physician who has performed the liberation procedure for CCSVI in Canada—and Dr. Mark Haccke—a world leader in diagnostic imaging—be invited to present their most recent scientific evidence.

As you know, our Liberal party garnered all-party support for a House of Commons Sub-Committee on Neurological Disease. On May 10th, we asked for an emergency debate regarding CCSVI, but unfortunately it was denied, and so immediately asked and were granted the take-note debate which took place on June 14th.

The Sub-Committee on Neurological Disease then had four hearings on CCSVI. On June 15th, the Sub-Committee heard from Dr. Zamboni (Italy), who pioneered the ‘liberation’ procedure to treat CCSVI, and Dr. Simka (Poland). Diagnosis of CCSVI involves a non-invasive Doppler protocol, and treatment for this condition involves a well known technique, standard balloon angioplasty. The researchers indicated that, according to their initial studies, both the diagnosis and treatment of CCSVI were deemed to be safe and have resulted in significant improvements in the quality of life of many MS patients.

We therefore applaud the courage of the Premier of Saskatchewan in calling for clinical trials, and the Health Minister of Manitoba in seeking support from her provincial counterparts to launch a countrywide clinical trial to test the efficacy of the ‘liberation’ procedure for MS patients. We are pleased to hear the support from Dr. Bolduc the Québec Health Minister. Yesterday, the Nova Scotia Premier stated clearly ‘There needs to be leadership shown on this file from the federal government. We are prepared to participate in a program that is led by them and agreed to by the provinces with respect to liberation therapy.’ Should imaging and treatment be offered, researchers would then have a large population to explore the possible link between CCSVI and MS, whether the liberation procedure improves quality of life and halts or stops disease progression, and numerous other research questions.

We strongly believe that CANADA must not miss the opportunity to collect the data from the hundreds of Canadians who have gone overseas or on this continent for liberation treatment. We need to know as quickly as possible whether there has been an improvement in their quality of life or not. If we take Poland, for example, each MS patient is seen by a neurologist, prior to liberation, and then must fill-out a complicated, lengthy form, which includes the Expanded Disability Status Scale (EDSS) score. Each patient must also have a magnetic resonance venography (MRV), an MRI which looks at the veins, an eye test, a Doppler test, and a venogram, imaging that shows the anatomy and flow in the veins before and after the procedure, as well as video during liberation. It was disappointing to hear from one of your top-ranking officials that ‘we don’t know what is being done overseas’. We therefore request that you immediately provide the funds to allow CIHR to develop a CCSVI registry to capture the data of those who have gone overseas, and who are continuing to travel for help.

As we stated in May, this is a matter of utmost urgency. Many MS patients are experiencing a rapid decline in their health. We believe there is a moral obligation to offer clinical trials to MS patients so that they have access to the imaging necessary to identify a venous malformation and access to the treatment that could possibly stop the progression of their disease in its tracks.
We eagerly await your response,

Dr. Kirsty Duncan, M.P.

The Honourable Dr. Carolyn Bennett, P.C., M.P.