Your Questions Answered

Click on a question below to see the answer.

CCSVI

What is CCSVI?

Chronic cerebrospinal venous insufficiency (CCSVI) is a term coined by Dr. Paolo Zamboni. Dr. Paolo Zamboni from the University of Ferrara in Italy published his preliminary findings about an apparent association between CCSVI and MS in June 2008, following a study of 65 patients. CCSVI describes a theory in which portions of the venous system (the body's network of large and small veins) in the head and neck are narrowed or blocked and therefore unable to efficiently remove blood from the brain and spinal cord (central nervous system). According to Dr. Zamboni, CCSVI results in slowed draining of blood from the brain and spinal cord. The pressure caused by the build-up of blood in turn causes reflux of blood back into the central nervous system through new blood vessels which develop when the others are not working properly. Dr. Zamboni goes on to suggest that because these compensatory areblood vessels don't have the same wall integrity as larger veins, they tend to leak blood into the adjacent tissue, depositing iron in the central nervous system and thereby triggering an immune response associated with multiple sclerosis.

Why is there such interest in CCSVI?

Much of the interest in CCSVI relates to research coming from cardiovascular literature. In late 2009 and early 2010 information about CCSVI was derived from three studies:

  1. In late 2009, the work of Dr. Paolo Zamboni and colleagues was published; titled Chronic cerebrospinal venous insufficiency in patients with multiple sclerosis. Researchers reported on observations involving 65 people with different types of MS compared with 235 people who were healthy or who had other neurological disorders. Authors reported an association between having MS and signs of venous insufficiency - suggesting that blood drainage by veins may be impaired, contributing to nerve tissue damage.
  2. In December 2009 a prospective open-label study of endovascular treatment of chronic cerebrospinal venous insufficiency was published. Dr. Zamboni and colleagues reported on 65 people who underwent a surgical procedure to relieve the venous narrowing. Authors reported that all participants were on disease modifying treatments. People with relapsing MS showed improvement in some study parameters at 18 months, but there was no improvement documented for those with progressive MS.
  3. In February of 2010, researchers from the University of Buffalo shared some preliminary observations from the work of Dr. Robert Zivadinov and colleagues. Using a sophisticated ultrasound technique to screen 500 study participants, Dr. Zivadinov noted evidence of CCSVI in 56.4% of people with MS, but also in 22.4% of healthy controls. In the April 2011 issue of Neurology, Dr. Zivadinov published the largest CCSVI study to date. His findings indicated on increased prevalence of CCSVI in MS but modest sensitivity/specificity, thereby suggesting CCSVI does not cause MS.

This early work suggested a potential connection between CCSVI and MS.

Since Dr. Zamboni's work was first published, the topic of CCSVI and MS has ignited a range of passionate opinions on websites, blogs, facebook pages, social media and conventional media around the world. Raising questions, concerns and skepticisms is a key part of the process of better understanding new medical theories and finding definitive answers.

Research is taking place around the world. Research on CCSVI was presented at various meetings such as the European Committee for Treatment and Research in MS (ECTRIMS) in October, 2010, International Society for Neurovascular Disease (ISNVD), in March, 2011 (the first conference of its kind, attended by vascular surgeons, interventional radiologists, basic scientists, physicists, neurologist, neurosurgeons, technologists and others), the Society of Interventional Radiology, in March , 2011 and the American Academy of Neurology in April, 2011.

When taken individually, many research papers have conclusions that could seem to contradict findings of the others. Some have shown a positive correlation of CCSVI and others did not. Researchers are all still seeking to understand CCSVI. It is important to note that while most studies provide valuable contributions in the search for clarity with respect to CCSVI and MS, not all studies are 'created equal.' That is, some studies will be of greater significance given the quality of their design. You can read more about research here.

In April, 2011, Dr. Zivadinov published the largest CCSVI study to date in Neurology . This study reported an increased prevalence of CCSVI in MS, but with a considerably lower prevalence than reported in Dr. Zamboni's work. CCSVI was also found in healthy controls and in those with other neurological conditions. In summary, the degree of prevalence of CCSVI in those with MS indicates that CCSVI does not cause MS.

What do we still need to find out?

As with many other emerging areas in MS research, the MS Society of Canada remains hopeful that investing in evidence-based research will give us the definitive answers we're seeking.

There are several ways that we are currently increasing our understanding of CCSVI and MS:

· In June, 2010, the National MS Society (USA) and the MS Society of Canada announced the commitment of over $2.4 million to support 7 new research projects focusing on the role of CCSVI in the MS disease process.

· Through the findings presented and/or published by researchers around the world

· Ultimately through the Phase I/Phase II Clinical Trial announced by the federal government, the monitoring system, and provincial initiatives such as the observational study launched by the province of Alberta.

The next steps in terms of information we need can be understood in two parts:

Part 1: Determine the relationship between CCSVI and MS and the best way to image it

Researchers generally agree that there needs to be consensus on a 'gold standard' (best practice) of imaging for CCSVI. Currently a variety of imaging technologies and a lack of a standardized diagnostic protocol could easily result in inaccurate diagnoses. You can read more about CCSVI diagnosis in our Considering CCSVI-Related Procedures section. As well as ensuring that we are consistent in the way we image and diagnose CCSVI, more information must be gathered on the frequency and prevalence of CCSVI in MS before we move on to test the CCSVI procedure itself; this is required even though compelling evidence is now available that the relationship between CCSVI and MS is not causal. Here are some questions that need to be answered in this first step:

  • What is the best way to image CCSVI?
  • What is the relationship between ultrasound findings and both normal variation and true venous insufficiency?
  • Does CCSVI occur in all kinds of MS?
  • Why might children present with CCSVI?
  • What is the relationship between CCSVI and other aspects of MS, such as MRI measures, disease duration, and disease progression?

Part 2: Determine the effects of treating venous insufficiency

If the results demonstrate that people with MS do have blocked veins that are associated with MS or its symptoms, researchers would then look at how treatment of the condition could benefit people with MS. Questions that will need to be answered include:

  • Do the effects of the treatment work in all or any types of MS?
  • How long do the treatment effects last?
  • Can the results be replicated in a 'blinded' study, as required for scientific rigour, where neither participants nor researchers are aware of the treatment they are receiving?
  • What are the reliability, risks and benefits of the treatment?
  • How does this treatment compare in effectiveness and safety to existing therapies?

The MS Society of Canada shares great interest in expediting this research, as it would any research that presents a potential lead in stopping, repairing or preventing MS.

Do these reports of a possible association between insufficient vein drainage and MS mean that MS is caused by venous insufficiency?

In April, 2011, Dr. Zivadinov published the largest CCSVI study to date in Neurology . This study reported an increased prevalence of CCSVI in MS, but with a considerably lower prevalence than reported in Dr. Zamboni's work. CCSVI was also found in healthy controls and in those with other neurological conditions. In summary, the degree of prevalence of CCSVI in those with MS indicates that CCSVI does not cause MS.

Further investigation into the relationship between CCSVI and MS is needed. The MS Society of Canada remains hopeful that research currently underway will give us the definitive answers we're seeking.

What benefits are being reported by those who have undergone the procedure?

Anecdotally, we understand that thousands of individuals worldwide have had a CCSVI-related procedure performed. The reports from individual anecdote range widely. Some people report that they were tested but no blockages were found in their veins. Many report moderate or even dramatic improvement in symptoms. Others describe little or no change in MS symptoms.

People have observed increased warmth and sensation in their hands and feet, a decrease in fatigue, improved heat-intolerance, better balance and mobility, and a decrease in pain among other reported improvements.

What are the potential risks or complications for this procedure?

As with any invasive procedure, there is risk. To date, there are three known deaths that have been associated with CCSVI-related procedures. There is general agreement that balloon angioplasty has less risk than the treatment of CCSVI involving stents.

Venous angioplasty is an unproven therapy. For this reason, it's not possible to accurately weigh the possible risks with the possible benefits, as one can do with other therapies or interventions which have years of study behind them.

Please read our Risks and Safety section for more detailed information.

Will CCSVI-related procedures benefit relapsing and progressive forms of MS?

Whether this type of treatment will be useful in any form of MS is currently unknown as research on this question is at a very early stage.

Anecdotally, reports indicate that people undergoing the experimental procedure seem to show more symptom relief with relapsing MS, rather than progressive forms of the disease. This also relates to the initial data supplied by Dr. Zamboni which indicated that there was no benefit for progressive forms of MS. Again, additional research is essential before any valid, scientifically supported statements can be made.

Could the symptom relief being reported by people after having treatment be due to the "placebo effect"?

The short answer to this question is that we don't yet know, because there is currently not enough robust scientific information to give us a clear answer. Between ongoing research around the world, the seven studies funded by the MS Society of Canada and National MS Society (USA), and the Phase I/II clinical trials announced by the Canadian government, we should soon have more definitive information on the relationship between CCSVI and MS.

The placebo effect can be a very powerful thing. It is a scientifically recognized, measurable reality that is taken into consideration when designing any clinical trial. Read more about the science behind the placebo effect here.

It is worth noting that not everyone is experiencing benefits.

Why should we care if it is a placebo response or a true medical benefit, if people feel better?

The difference between true medical benefit and placebo is that the placebo does not provide lasting benefit. A basic tenet of research ethics is that a treatment is provided only when there is evidence to suggest it will improve health. Research has not yet shown for that CCSVI is a measurable condition or that it's correlated to MS.

Because the MS Society's first priority is people with MS, we have a responsibility to recommend and advocate treatments which have been demonstrated through sound science to improve health and that the improvements outweigh the risks.

Access to CCSVI Testing and CCSVI-Related Procedures

Can I be tested or treated for CCSVI right now?

CCSVI-related procedures are currently unavailable in Canada. Testing in Canada is possible through studies we are funding and testing outside of these research protocols may be possible in private clinics operating in some provinces. Because there is currently no standardized imaging equipment, training, or protocol for diagnosis, people with MS have reported obtaining different diagnostic results at different clinics. You can read more about this is in the CCSVI Procedure section of the website.

CCSVI Treatment is available outside of Canada. Read more.

In June 2011, the Honourable Leona Aglukkaq, Minister of Health, announced that the federal government will fund Phase I/II level clinical trials on CCSVI and MS. Read more from the MS Society of Canada, which has committed $1 million towards the financial cost of a clinical trial. We encourage governments of provinces and terrorities to fund therapeutic clinical trials.

Read an FAQ specific to the Phase I/II level clinical trials on CCSVI and MS.

Why can't Canadians get treatment in Canada, when it is available in countries like the US, Scotland, Australia and others?

Canada has one of the most regulated health care systems in the world. It is designed to protect patient safety. For the most part, health care services are delivered by provincial governments within the framework of the Canada Health Act. At this time, provincial governments and colleges of physicians and surgeons have concluded that there is not enough evidence to support CCSVI treatment being funded through the public health care system.

An example of how the interest of the public is protected is the role played by provincial colleges of physicians and surgeons. Each province has created a "college" by legislation with the role of regulating the practice of medicine to protect and serve the public interest.

This system of self-regulation is based on the premise that the college must act first and foremost in the interest of the public. All doctors in a particular province must be members of the college to practice medicine. The college has a responsibility to monitor and maintain standards of practice.

In addition, there is growing literature about evidence-based medicine. The growth of evidence-based medicine and the existence of colleges as self-regulatory bodies may be factors in explaining the initial skepticism most physicians in Canada displayed in response to the preliminary findings published by Dr. Zamboni.

Foreign health care systems are regulated in different ways and generally with less rigour than the Canadian system.

Many people with MS can't afford to wait until these theories are proven or disproven, there is nothing else working for them. How can the MS Society not support treatment for CCSVI, at the very least on a compassionate basis?

We recognize and empathize with the challenges of living with MS, and the desire to try any procedure that might work, however, the MS Society of Canada cannot advocate for a procedure that is not yet backed by scientific evidence. We believe this would be fundamentally irresponsible of us as an organization with people affected by MS as our first priority.

Living with the uncertainties that come with a disease like MS is very difficult. This is particularly the case for those with progressive forms of MS. While there are ways of managing progressive MS in terms of symptom management, coping strategies, and day to day living, there are currently no effective treatments for this type of MS. This can be very disheartening.

In some diseases or conditions, physicians can access experimental treatments on compassionate grounds through Canada's Special Access Program. This access is limited to patients with serious or life-threatening conditions on a compassionate or emergency basis when conventional therapies have failed, are unsuitable, or are unavailable. Because the life-span of persons with MS is very close to that of the general population, MS is not generally considered a life-threatening illness.

The MS Society is committed to accelerating the research process so that we can get to definitive answers on CCSVI as quickly as possible.

Having blocked or narrowed veins in the neck and chest isn't normal. People have blocked and narrowed arteries fixed all the time. Why shouldn't blocked veins be fixed - whether it is in people with MS or not?

Human venous anatomy and drainage is extremely variable even in healthy people. As a consequence, it is difficult to provide standard reliable descriptions of the "normal" anatomy for the venous system. Vascular surgeons know, however, that variability in the diameter of cerebral veins is regularly observed in the normal, healthy population and nearby muscles and bones will affect the natural topography of the veins.

The venous drainage of the brain is a highly flexible system naturally designed to have many alternate routes. This way, if one vein is damaged, other veins draining the brain and spinal cord can easily handle the blood flow out of these organs. Further, different veins are in use depending on whether a person is standing up or lying down. A proportion of the brain's venous drainage runs through the internal jugular veins when standing, however when lying down, that proportion of the venous return tends to flow through alternate venous routes.

The arterial system does not have the same flexibility - which is why we needed to develop arterial angioplasty, a well-recognized life-saving procedure for those who have coronary blockages.

Arterial angioplasty and the insertion of stents into certain arteries are established medical procedures. However, it is very important to emphasize that the walls of arteries differ greatly from veins. Arteries are muscular, thick-walled vessels that carry oxygenated blood under high pressure from the heart to the tissues. Think of them like thick, hard PVC plastic. Veins on the other hand, are thin-walled - think of saran wrap -- and collapse naturally when not filled with blood. If blocked either by a malformation or by external pressure from a muscle or bone, narrowed veins will return to their pre-surgical shape (i.e., re-stenose) after being artificially expanded by insertion of an inflatable balloon.

Venous angioplasty is rarely used because the incidence of re-stenosis is so high. This is because narrowed veins are usually scarred, and the scar tissue is very elastic. So, if a narrowed vein is treated by balloon venoplasty, it is like stretching an elastic; remove the balloon from the vein and its elastic properties make it return to its original shape.

Venous angioplasty is performed on kidney dialysis patients in Canada. If it is an approved procedure for kidney dialysis patients, why is it not approved for people with MS?

According to vascular surgeons, balloon venous angioplasty is used in some kidney dialysis patients when it is the only way to main access for dialysis, a proven life-saving treatment. From a medical standpoint, the benefit has been proven to outweigh the potential risk. Recurrence rates for this procedure is very high.

The prevailing medical opinion is that while venous angioplasty for veins may be relatively safe, it is difficult to justify the procedure as the veins eventually will re-stenose. In addition, there is a distinct possibility that the damage to the inner lining of a vein (that happens when a vein is artificially dilated) can increase the risk of thrombosis (clotting) of that vein: such clots are unstable, and can break free, travel through the heart and block major vessels in the lungs. This sequence of events, known as pulmonary embolus, can cause debilitating lung disease or death.

Insertion of stents into veins is rarely performed because stents in veins may clot, or in rare cases may become dislodged and move towards a patient's heart. There are also risks of brain hemorrhage associated with the use of blood thinners (usually required in venous stent placement) which can lead to stroke or death.

Why are you not posting a list of clinics where the CCSVI procedure is available?

There is currently no standardized protocol for CCSVI testing or treatment and clinics offering the service are appearing all over the world. Because the procedure is still considered experimental and because we do not have specific information about each clinic, its staff, and practices etc., we cannot responsibly list these sites.

Read more about visiting a clinic.

Safety has been raised as a concern with respect to ccsvi-related procedures. What about the serious risks of currently approved disease modifying therapies, like Tysabri or Gilenya? Why have these been approved in Canada before venous angioplasty?

In the past few years there have been new disease-modifying therapies approved for use. Tysabri and Gilenya have risks that require careful consideration. Since Tysabri was introduced in to the market in 2006, 111 cases of PML and 22 deaths have been reported. The risk of PML in people taking Tysabri has been estimated to be 1 in 1000 (0.1%) during 18 months of treatment.

Gilenya, approved by Health Canada in March, 2011, carries warnings about potential serious risks. In clinical trials of Gilenya, a small number of serious herpes infections occurred, including two deaths from herpes infections that occurred in people taking a dose higher than the approved dose of Gilenya.

Because both Tysabri and Gilenya have been under study for over 10 years in both cases, the information from trials helps to clarify the benefit/risk ratio for those prescribing and taking these disease modifying treatments. Vein dilation (the CCSVI-related procedure) is an unproven therapy. It's not possible to compare the relative risks and benefits of an unproven therapy with a proven one.

While the risks of Gilenya and Tysabri are greater than prior treatments, the potential benefits are also higher. Tysabri has a 68% reduction rate in relapses and Gilenya a 54% reduction, versus the 33% provided by the injectable disease-modifying therapies. In other words, in the case of these medications, the higher the risk profile, the greater the chance for benefit.

If you are trying to decide what your comfort level is with respect to the higher risk disease-modifying therapies, ask your physician questions below:

  • What are the chances that I, with my type of MS and history of disease, will be affected by the risks and/or benefits outlined?
  • Can the risks be minimized and if so how?
  • Is a drug with greater potency (and potentially higher risks as well) the one I'm in fact best suited for?

When people living with MS approach the risk/benefit ratio of a medication, whether it be an approved disease-modifying therapy or the ccsvi-related procedure, there are personal and subjective measures to consider as well. For instance, when weighing possible risks and benefits individuals might consider:

  • What side-effects or risks are ones I could live with?
  • What side-effects or risks am I not willing to take?
  • What is my lifestyle like and how will the possible benefits/harms impact my life?
  • What matters to me?
  • What matters to my family?

You can read more about how to consider risk and benefit of medications here.

Health Canada and an organization such as the MS Society must be guided by an evidence-based process. For this reason, correlation must be demonstrated in an experimental treatment before clinical trials investigating safety and efficacy can occur. However, the decision to seek CCSVI-related procedures out of the country is a personal one. Each person must be guided by their own comfort level with respect to possible risks and benefits.

Pharmaceutical Funding

Is it true as some people have suggested that the MS Society's dependence on money from the pharmaceutical industry is impeding its support of Dr. Zamboni's research?

No. Pharmaceutical support is not a factor in MS Society decision-making about innovative research and/or emerging theories.

The MS Society's total revenue from pharmaceutical companiesis less than 1% of the amount of money the organization receives annually. Any pharmaceutical funding received by the MS Society of Canada is subject to the MS Society's strict policies that prevent any control or influence by the donor on our decision-making. This is consistent with the ethical principles of Canada's research-based pharmaceutical companies which require that they assure the independence and integrity of stakeholders, in terms of their operations, policies and activities.

Examples of supports and services funded by pharmaceutical companies include resources like publications (e.g., Guide to Employment and Income Supports" and "Mighty Special Kids: A workbook for kids living with MS"). The funding that supports our research and programs that directly impact people living with MS comes from community fundraising events and the donations of donors committed to ending MS.

Pharmaceutical companies fund some clinical research studies. Doesn't this funding bias the work of these studies?

In the world of MS, the pharmaceutical industry has developed a number of treatments which have been proven in randomized controlled clinical trials to reduce relapse rates and to slow the progression of the disease. Prior to the mid- 1990s, there were just treatments for symptoms.

That being said, those who oversee clinical trials recognize that there is the potential for conflict of interest or the perceived conflict of interest. This is managed at a number of levels including research ethics boards and checks and balances at universities and hospitals. In 1998, the three major public research funding bodies in Canada -- the Social Sciences and Humanities Research Council (SSHRC), the Medical Research Council (MRC), and the Natural Sciences and Engineering Research Council (NSERC) developed a common ethics policy statement. It was revised in 2010. Read more about the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans.

Included in this policy are checks on the participation of physicians in industry-sponsored research activities which ensure there is no financial incentive that entices physicians and researchers in the direction of pharmaceutical grants over government grants.

It seems like all neurologists have 'disclosures' to make with respect to financial relationships. How can I trust that the people giving me advice are free from bias?

Disclosures made by neurologists and others about financial relationships (institutional, government, or pharmaceutical funding, for instance) are a way of maintaining transparency. In addition, there are many other checks put in place by regulating bodies to ensure the integrity of research is maintained. It may be reassuring to know that the Canadian health system has created many checks and balances in order to protect the integrity of research, through policies such as the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans. Those advancing the CCSVI theory might also have a conflict of interest, as might those with ownership of private imaging clinics. This does not mean that these individuals don't have a sincere interest in the patients that they see, but it is something to consider when looking at the issue of bias.

Medical Professionals

Why do some neurologists seem resistant to the CCSVI theory? It seems that they don't really want CCSVI to be a cure.

Raising questions, concerns and skepticisms about new medical theories is an intrinsic part of an evidence-based research process.

Physicians who treat or research MS realize they do not have all the answers. They do not assume the current hypothesis about the cause of MS is necessarily correct. There is not even uniform agreement that MS is truly an auto-immune disease, although clearly inflammation plays a very important role in relapsing remitting MS.

Most physicians are open to considering other theories and indeed, the history of medicine has taught us that sometimes answers come from unexpected places.

What can people who have gone abroad for CCSVI-related procedures expect in terms of after-care in Canada?

Canadian physicians are under the legal mandate to provide the highest standard of care for everyone they treat. People who have undergone experimental procedures should receive the same standard of care that any person with or without MS would receive.

The MS Society of Canada continues to encourage governments to ensure that no Canadian, who undergoes treatment for CCSVI outside of Canada, is denied necessary post-treatment and follow-up medical care they require when they return home.

This is primarily the responsibility of provincial and territorial governments.

The provinces of Nova Scotia, PEI and New Brunswick have committed physicians in those provinces to provide appropriate post-treatment care.

The government of Ontario has developed guidelines that are designed to educate people on the follow-up care that patients with MS who have undergone an endoluminal vein dilation procedure can expect from their health care practitioner in Ontario. These guidelines are based on the guidelines developed by The Ontario Multiple Sclerosis Expert Advisory Group for health care practitioners in Ontario.

Ontario

Some of the provincial College of Physicians and Surgeons have published information related to aftercare. While not official College Standards of Practice on this topic, these documents regarding the follow-up testing or treatment for any patient who has received medical care outside of the country may be helpful to you or your treating physician.

Alberta (in English only)

Quebec

Finally, for those denied follow-up care, consider taking the following steps:

  • Complain to the provincial college of physicians and surgeons which is the regulating body for doctors;
  • inform the provincial ministry of health and your own member of the provincial legislature;
  • file a complaint with your provincial human rights commission or tribunal;
  • contact your local MS Society division or chapter should more information about any of these steps be required.

Do researchers believe that MS is strictly an autoimmune disease?

The exact cause of MS remains debated. MS is thought to be primarily an autoimmune disease but the word 'strictly' in this context would not be accepted by most researchers. What needs to be emphasized here is that the autoimmune theory is just that - a theory. Researchers remain intellectually open to the as-yet-unproven cause(s) of MS.

MS Society and CCSVI Research

How much time and funding are needed to study the CCSVI hypothesis?

The amount of time and funding required to investigate CCSVI will be significant. It is impossible to predict an exact timeline or budget needed to move any theory from hypothesis to reliable treatment.

What about other research?

The MS Society contnues to fund some of the world's most promising research guided by Canadian researchers who have dedicated their careers to ending MS. Monies committed to CCSVI will not take away from current funding commitments or from the much-needed services to people living with MS that the MS Society delivers from coast-to-coast.

To learn more about some of the compelling research taking place in Canada, visit the MS Society Funded Research section of this site.

What is the MS Society's role in CCSVI research?

The MS Society's primary role in research is to fund the avenues of greatest potential and scientific excellence. It is with this role in mind that the MS Society opened up its research grant application process specifically to study CCSVI and MS.

By funding research into MS and CCSVI, the MS Society hopes to get answers as to the relationship between the two. In June, 2011, the Honourable Leona Aglukkaq, Minister of Health, announced that the federal government will fund Phase I/II level clinical trials on chronic cerebrospinal venous insufficiency (CCSVI) and MS. The MS Society of Canada has committed $1 million towards the financial cost of a clinical trial. If the treatment of CCSVI is proven to be a valid therapeutic treatment option for MS, then the MS Society would advocate to make it widely accessible.

The science surrounding CCSVI seems to be evolving rapidly. Are the seven studies funded by the MS Society of Canada and National Multiple Sclerosis Society (USA) still relevant?

The science surrounding CCSVI is evolving rapidly. This is because there are many as yet unanswered questions and still much to understand with respect to diagnosis and correlation. A review of existing literature on CCSVI and MS will reveal contradictory findings. Some researchers have shown an association between vein abnormalities and MS while others have not. With more study we will have more knowledge and whether this association exists as well as whether or not vein dilation benefits MS patients.

The studies funded by the MS Society will add to this evolving understanding. A case in point is the work being done by Dr. Brenda Banwell. Dr. Banwell, a noted expert in pediatric MS, has assembled a team to study CCSVI in pediatric MS patients - a population where the disease process is at a very early stage, and where advanced age and other health conditions that might affect blood flow do not exist. They are determining whether CCSVI occurs in children with MS using non-invasive MRI measures of vein anatomy and novel measures of venous flow and are comparing the results to children without MS. The team also is using "hemodynamic" (blood flow) tests to investigate a hypothesis that might explain how blood flow problems could lead to myelin damage, through the accumulation of excess iron. Determining whether the veins and vein flow are abnormal very early in the MS process in pediatric MS will add additional depth to studies of CCSVI in adult MS. It should also be noted that Dr. Banwell's team -- like others funded by the MS Society and NMSS (USA) -- is multidisciplinary and includes an imaging scientist who is leading a program to evaluate blood flow in children, a world-renowned neuroimaging expert , and a pediatric neurologist with experience in venous malfunction in children.

The seven studies will be investigating other key questions such as:

  • Does excess iron deposition in the brain correlate with the presence of venous obstruction?
  • What is the rate at which blood flows in the veins?
  • Are vein abnormalities from atrophy (brain tissue volume loss) or specifically MS? One team will be comparing the MS group to people with atrophy from Alzheimer's disease.
  • What can be learned about CCSVI by comparing scans of those with MS to their family members, including identical twins of MS patients who have not developed MS?
  • Can Dr. Zamboni's results be replicated? Can these findings be validated by other imaging techniques?

We follow these and other studies going on around the world with profound interest.

Are there interventional radiologists involved in or leading the funded studies?

The research funded by the MS Society of Canada and National MS Society (USA) are led by both neurologists and interventional radiologists. Their research teams also include imaging specialists and vascular experts. No matter the discipline of the principal investigator, each study's team requires collaboration between key areas of expertise. An example is the team led by one study's principal investigator, Carlos Torres. Dr. Torres is a neuroradiologist at the Ottawa Hospital and an Assistant Professor of Radiology at the University of Ottawa. Dr.Torres has assembled a top-notch team to address this project, including MS clinical research experts, physicists with a deep understanding of MR physics and imaging, clinical researchers with expertise in vascular (blood vessel) pathology and neuro-interventional radiologists. Read more.

What is the Multiple Sclerosis Society of Canada's position on the International Society for Neurovascular Disease (ISND) and other CCSVI research advocates?

The investigation into CCSVI can be understood as an emerging field with evolving technologies and a necessarily multidisciplinary context. The ISNVD represents an important part of, but does not reflect the full spectrum of specialists necessary in untangling questions about CCSVI and MS. In order for consensus to be reached in this new and emerging field, other specialists, including neurologists and neuropathologists, must also play their part in what is the usual course of scientific scrutiny. The seven studies currently underway and funded by the MS Society and National MS Society (USA), which involve experts such as neuroradiologists, interventional radiologists, statisticians, biomedical engineers, physicists, neuroethicists, and cardiovascular MRI specialists have a part to play in this regard.

The International Society for Neurovascular Disease (ISNVD) met in Bologna, Italy in March, 2011. This conference was attended by vascular surgeons, interventional radiologists, basic scientists, physicists, neurologist, neurosurgeons, technologists and others. The MS Society of Canada had a representative in attendance.

Research from this and other conferences adds to the growing body of information on CCSVI and MS. However, while we are learning from published studies on CCSVI and MS around the world, we still do not have definitive answers with respect to the relationship between CCSVI and MS, nor the benefit of CCSVI-related procedures on MS.

We follow CCSVI and MS research going on around the world with profound interest.

Fundraising

I'm not sure I want to keep fundraising for the MS Society because of your view on CCSVI. Why should I?

Donating is a very personal decision and we understand that some people may wish to contribute to other causes.

The MS Society is hopeful that the current studies on CCSVI and MS will provide us with the sound science needed to answer some key questions.

People affected by MS have always looked for hope for tomorrow and help for today. Research - CCSVI and other avenues of research - gives us hope for tomorrow. Fifteen years ago there were no disease-modifying therapies for MS. A lot has changed for the better, and research gives us that hope that a lot more will continue to change for the better.

But many people affected by MS also need practical support right now.

Perhaps the best reason to continue donating to the MS Society of Canada is that no CCSVI-focused organization is attempting to replicate the supports and services of the MS Society of Canada. Something like the MS Walk plays a critical role in funding services delivered at the community level.

In the words of one client,

I would like to comment on what a wonderful supporter my local chapter has been....MSers in this region truly have a sense of community; none of us are alone. I am so thankful for ongoing research but I pray that we don't forget to meet the needs of people who are currently suffering and need the support of local chapters like mine.

Please note that the MS Society of Canada honours, as it always has, your preference with respect to donation. Should you wish to donate specifically to services directly impacting a person with MS or MS Society CCSVI Research, please indicate this on your cheque or online donation.

Is it true that the MS Society has a high cost of administration? Can you tell me where my fundraising dollars go?

The MS Society of Canada's mission is to be a leader in finding a cure for multiple sclerosis and enabling people affected by MS to enhance their quality of life. Our two major programs provide hope for the future through the support of MS research into the cause, treatment and cure of the disease and help for today through our many services that assist people with MS and their families. A key value of the MS Society of Canada is that we adhere to the highest standards of quality, transparency, and accountability.

Two questions are posed here. The first answer is quick - the MS Society's administration expense for 2010 was 6 per cent. This covers things like administrative staff, office rental costs and insurance. The cost of our fundraising events for the same period was 42 per cent. Some programs like MS Walk and the RONA MS Bike Tours are lower than this overall average while others like the MS Read-A-Thon and our direct mail program are higher. What follows below is important context to answer fully the question of where the fundraising dollars go.

The MS Society is a national charity led by volunteers who believe wholeheartedly in what we do and how we do it. We have over a million donors and 100,000 event participants annually supporting our work and we receive only 2% of our revenue from the government. In contrast, according to Statistics Canada, the majority of charities in the health sector receive 70% of their funding from the government.

With virtually no government funding and comparatively low bequest revenue -sources of revenue that significantly lower the costs of fundraising for other charities - the MS Society must raise funds through a variety of means. Other organizations that receive significant amounts of funding from government do not need to incur certain fundraising expenses to generate the dollars necessary to support the clients that they serve. Therefore, we would be reducing the net revenue that helps those affected by MS if we decided to eliminate fundraising events that have higher expense factors.

Like any other charity that raises funds, fundraising costs are a reality. Some of our most grassroots events like our walking and cycling events have significant costs associated with them: staff to coordinate the event and manage thousands of volunteers who help organize the events, producing and mailing approximately 200,000 tax receipts annually, marketing materials to encourage participants to raise funds, prizes to reward fundraising efforts, security, and rental of start/finish locations among many others.

As a predominantly self-funded charity it would be unduly risky for us to focus on only one or two sources of funds and it would also be insufficient. That's why we have to raise funds through a diverse portfolio of sources and campaigns, each with its own cost structure - much like businesses have different product lines with different profit margins.

Our reporting policies are transparent and responsible, and adherent to all government and industry standards. We have extensive volunteer oversight and control mechanisms to ensure every dollar raised is used to maximum benefit.

Here is a breakdown of costs from our 2010 fiscal year. $33 million in program expenditures were disbursed as follows:

  • $9.6 million client services - including education programs, self-help groups, recreational and social programs, information and referral services, financial support for daily living or equipment needs, etc.
  • $10.3 million research - research grants, scholarships, fellowships, and support of our endMS Research & Training Network and new research funding into the relationship between CCSVI and MS.
  • $7.0 million public education and awareness - awareness campaigns, newsletters
  • $3.8 million chapter and volunteer support and development - volunteer recruitment and training, as well as chapter support from division and national offices
  • $1.7 million government and community relations - educating all levels of government about needed changes to benefit people living with MS and assistance to clients dealing with local transit and accessiblity issues.
  • $922,000 - MS clinics - support to 27 MS clinics across the country that provide direct medical support to people living with MS

For more information please see the National Impact Report and National Stakeholders' Report.

To learn more about donating with confidence to the MS Society of Canada, click here.

MS Society and Advocacy

What is the MS Society of Canada's role with respect to encouraging the federal and provincial governments to make CCSVI testing and procedures available for people with MS?

The MS Society is very active in advocating to all levels of government for changes that will improve the quality of life for people affected by MS. One example of this is the MS Society's role in advocating for the inclusion of Health Canada approved drug therapies on provincial drug funding programs. The MS Society also advocates for changes to tax measures to improve the income of people with MS, caregiver supports, accessibility concerns and more.

In terms of CCSVI, right now the barrier is the lack of evidence supporting the hypothesis for both diagnosis and treatment that provincial governments, colleges of physicians and surgeons and individual physicians need to determine the procedure's safety and effectiveness.

There is great hope that current ongoing research will provide solid answers to whether, and how, CCSVI is actually related to MS, and how to effectively diagnose CCSVI. When these answers are available, researchers can then confidently move into clinical trials of CCSVI treatment to fully assess its safety and efficacy.

The MS Society of Canada is already funding CCSVI research and has set aside $1 million to help fund a CCSVI and MS clinical trial. In addition, the MS Society asked both the federal and provincial governments fund research into CCSVI and MS. There has been significant progress. In March, 2011, Minister of Health Leona Aglukkaq announced the creation of a Canadian Multiple Sclerosis (MS) Monitoring System to measure and monitor the evolution and treatment of MS including the CCSVI procedure. In June 2011, the Minister announced the federal government would fund Phase I/II clinical trials of CCSVI. A number of provinces have also responded by establishing monitoring systems or observational studies, committing to appropriate follow-up care for people who have had the CCSVI procedure and setting aside funds for CCSVI and MS research.

People living with MS urgently require definitive answers on the topic of CCSVI and MS. The MS Society hopes that the strong response from provincial and territorial governments across Canada will help accelerate the research process so this goal can be achieved as quickly as possible.

Please see also our Government Relations and Advocacy section for more information.

What have our various governments committed to with respect to CCSVI and MS?

See our Government Relations and Advocacy section of this website for a summary of provincial governmental action and MS advocacy activities.

Why is the MS Society of Canada asking the government to do a registry for people with MS rather than funding one itself?

Directly funding CCSVI research such as the seven studies funded by the MS Society of Canada and National MS Society (USA) is the quickest route to answer key questions on CCSVI. Data coming from these studies is the type of evidence required by federal and provincial governments and related institutions to determine next steps towards a possible pan-Canadian clinical trial and/or possible public reimbursement of treatment. The reason we are advocating for a government-led registry to provide follow-up observational data is that provincial governments can instruct physicians and other health care professionals to collect certain types of information and expedite access to health information across the health care system. The MS Society of Canada is 100% committed to keeping all people living with MS at the centre of our work. This will continue to be what drives us as we move through this new phase of MS research.

ccsvi.ca

Why can't people comment on the story submissions?

The decision not to have a comment field for the 'Your Story' submissions was based upon the priority of encouraging a comfortable and judgment-free environment in which people can share their stories.

Why did you buy the domain name ccsvi.ca BEFORE the Zamboni show aired on W5?

The ccsvi.ca domain was bought in November 2009, following the airing of the W5 television show and the apparent immediate interest from the public. Given the impact of the W5 program, a decision was made to purchase the domain by the MS Society of Canada. The intention of the purchase was to ensure a site would be available should there need to be CCSVI information hosted by the MS Society of Canada.

The decision to use the domain name for a dedicated website was made in 2010, when it became clear that the current MS Society's website information on CCSVI required significant enhancement in order to address the growing CCSVI-specific information needs of people living with MS.

Miscelleaneous

Are disease modifying-treatments effective in the long term?

The injectable disease-modifying treatments (Copaxone, Rebif, Avonex, Betaseron and Extavia) reduce the number and severity of attacks in the hopes that they will slow disease progression over the long-term. They have been proven to reduce disease activity by about 30% or more in short-term studies. While there are a number of studies that suggest a long-term benefit, there are also some which question the long-term benefit. In summary, it is known that these medications have a short-term benefit on relapses, disability and MRI manifestations of the disease. It is hoped that they also have a long-term benefit as well, and this is something that is under study.