October 16, 2010
Calgary Multiple Sclerosis Clinic
Foothills Hospital
AC137A SSB, 1403 – 29th Street NW
Calgary, Alberta T2N 2T9
Attention: Dr. Wee Yong and Dr. Luanne Metz,
Subject: CCSVI in MS patients
With respect I would ask you not to put this letter aside and read what I have to say.
I am writing this letter on behalf of many of your MS patients.
Since November 2009 when CTV broke the story on Dr. Zamboni’s hypothesis and
his pilot study, the MS community has not been the same. It has had a
profound effect not only on the MS patients but the MS Society and the
MS Clinics.
I appreciate that most Neurologists believe that MS is an autoimmune disease and maybe that is true. To date there has been
billions of dollars and countless studies to try and support that
hypothesis. I also know that there has been a vascular connection to MS.
Many attempts to bring the vascular theory forward have never been
accepted or truly investigated. We think the time has come for this to
be answered once and for all.
Is it possible that maybe this mysterious disease of Multiple Sclerosis is associated with both
theories? I am unclear why the MS Neurologists have been so determined
to undermine and negate the vascular connection. Would it not be
prudent to be open to the possibility and take the time and money to
fully research and investigate the vascular abnormalities, reflux and
potential treatment that has given not only hope but improved quality of
life to so many?
The optics presented by most Canadian Neurologists associated with the large MS clinics is one of negativity,
mistrust and conflict of interest. The MS Society provides research
grants to so many of you in order to provide the best care, research and
treatments to your patients. In return there is an expectation that all
MS Neurologists should provide hope, respect and willingness to help in
this progressive and debilitating disease.
Many MS patients feel intimidated with the Calgary Clinic and feel like they are
not welcome unless they participate in drug based treatments. They
experience unwillingness from the Neurologists and support staff to
discuss alternative treatments such as CCSVI testing and treatment. They
feel they do not get factual or respectful responses due to fear
tactics and a dismissive attitude. They believe the Neurologists think
they own the MS disease and the patient. Referrals to other specialists
that might provide diagnosis of vascular symptoms are ignored. They are
afraid of the confrontation and the possibility of not receiving any
future medical support. Many of your patients are not being honest or
direct when they come for their appointments specifically with regards
to CCSVI.
Many MS patients are deciding to take their disease into their own hands because of this fractured relationship. They feel
abandoned by the Canadian medical system if they choose to seek
treatment for their vascular abnormalities. They feel discriminated
based on their label of MS.
There are many people with Multiple Sclerosis who are making the decision to seek CCSVI angioplasty
treatment outside the country. Canada Health Services and provincial
level governments continue to deny and delay access to the angioplasty
procedure based solely on a diagnosis of MS. This decision is supported
by recommendations from the MS Society and its medical advisors of which
both of you are members. We are all citizens of Canada and we should be
ashamed that we are not providing this low risk alternative treatment
in a safe and controlled environment.
It raises the question throughout the MS community to understand what the motives
would be for such non advocacy, and unfortunately the optics of the
pharmaceutical association becomes relevant. I appreciate that the MS
Clinics receive significant research funding from pharmaceuticals and
directly to some doctors via consulting fees, honoraria and other
miscellaneous benefits. The sudden pressure for research into a non-drug
treatment could impact the status quo and divert money and attention.
Having said that, we must not lose focus of why we do what we do. I
sincerely hope it is for the benefit of the MS sufferers and not
personal egos and backroom politics.
We were discouraged to find out that when Yves Savoie from the MS Society of Canada announced his
intention to seek $10 million dollars from the Canadian Institute of
Health and Research (CIHR), that the MS Society medical advisory
committee members all resigned in protest. They were quickly reinstated
when Mr. Savoie promised not to push the request. Again both of you were
members of this committee. It was no surprise when the joint
invitational meeting took place on August 26 with the CIHR that it was a
unanimous decision to not fund clinical trials
relating to CCSVI. Again the optics of this situation do not fair well
with the MS patient’s trust in the MS Society and the MS doctors.
The risks of angioplasty are considered low in terms of medical procedures.
The risks are no greater than the risks associated with most drug
treatments that are prescribed with ease. The benefit versus the risk
factor is an individual assessment that should be discussed between the
doctor and patient. Compassionate grounds should be considered when no
other options exist and quality of life is diminished.
It is not important whether CCSVI causes MS or MS causes CCSVI. Many
patients who have received the angioplasty procedure are experiencing
relief of their symptoms and their quality of life is improving. The
real focus should be studying why some people are experiencing great
results, some only good results and some no results. We need to include
the angioplasty procedure as an alternative treatment under controlled
studies to get the answers that we all need.
We are aware of the 4 studies that were given grants from the MS Society to study the
imaging related to CCSVI. With all due respect, this study has been
flawed from the start. Most CCSVI supporters have already concluded that
the pending results will not support CCSVI treatment. These studies
are being stalled and no assurance has been given to indicate that
proper training and equipment will be utilized. There is suspicion that
only MS Neurologists associated with the MS Society’s Regional Research
and Training Centers were awarded these grants. These RRTC’s were
already receiving this money before the CCSVI study was introduced. It
was then redirected to specific CCSVI imaging as their priority project.
Again the optics come into question.
We need MS Neurologists to work with the Interventional Radiologists and Vascular
specialists to investigate this new hypothesis. We ask that you remove
the roadblocks, discontinue the stall tactics, fear mongering and
provide your expertise and assistance in support of CCSVI testing and
treatment. CCSVI has opened many options and avenues to explore and
there is much to learn. Dr. Fabrizio Salvi was a sceptical MS
neurologist when he was first introduced to Dr. Zamboni’s theory. Dr.
Salvi kept an open mind and satisfied himself that this theory had
merit. Dr. Zamboni and Dr. Salvi have been working together ever since.
We are asking you and all MS Neurologists to open your minds to new
possibilities and react in an appropriate manner that will restore hope
to all MS sufferers and their supporters. The current situation does not
benefit the welfare of the MS Society, the MS Clinics and most of all,
the MS patient.
Thank you for your time and consideration.
Respectfully yours;
Carol M. Prest
http://www.facebook.com/notes/carol-prest/my-letter-to-the-calgary-ms-clinic-neurologists/10150309779345226