endMS.ca It's time. End MS.

From  Kimberly G.  on  November 23, 2009

I have been following CCSVI for several months now. This week I should be getting examination of my internal jugulars and azygous veins. Thanks to recent news and CTV's W5 exposure, my Drs will be more willing to take action. They are usually very supportive but there have been so many blind alleys to travel before and they are wary. I hope there's some light at the end of this one,

From  Rescuenuggife  on  November 26, 2009

Unadulterated words, some true words dude. Totally made my day!

From  MSGirl  on  December 21, 2009

I am outraged that the drug companies were able to keep Dr Zamboni's work quiet for so long. I have heard now, they have pressures the Italian govt to shut down Zamboni - he is no longer able to do the procedure. Multi billion dollar pharmaceutical industry can determine whether us suffers will get better or not. People need to speak out loudly and pressure the govt to do what is right!!!

From  josef  on  January 15, 2010

I am an MS patient, and a member & donor of the MS Society. It really baffles me how reactive the MS Society in Canada is. Just take a look at any other MS society ....at how proactive, vibrant, flexible, nimble, open to ideas... how they respond to and involve their members. Take for example the National MS Society http://www.facebook.com/nationalmssociety?ref=nf Yes thank you MS Society of Canada for calling for research on CCSVI but after what ??? after thousands and thousands of email and phone calls to Yves Savoie, to minister of health, after so many cries while the rest of the world is way ahead of us. I am thankful to our government for investing the money in research and trying to regulate the funding through societies but the system in place does NOT reward the breakthroughs that will someday lead to a cure! The system in place is only to care for ms patients - which is great do not misunderstand me- but if we need someone to arrange for wheeltrans and sandwiches and book rooms to talk and no action we could do it ourselves! Please MS Society of Canada, stop being the advocate and spokesperson of drug companies and start being a proactive institution that rewards innovation and will shine the way other Canadian institutions shine around the world! Just think of the ctv report and what it did! The big question remains, everyone knew about this CCSVI EVERYONE but no one dared to talked about it in Public!!! WHY ? Ask yourselves. Thank you for reading my post and I wish us all well and good health.

From  Concerned  on  January 17, 2010

I thank the MS Society of Canada for adjusting their research application timeline recently to include applications for CCSVI research proposals. HOWEVER, during my fundraising efforts at this time will be focussed on re-directing annual donations directly to the researchers (BNAC, Dr. Haake, etc.) to ensure they receive immediate funding for their work. I also suggest that others in the MS Community to the same. I would like the MS Society to report back to the MS Community in June / July to advise on who has received research money, how much, and the subject of the research. Disappointingly, the MS community is relying on websites other than the MS Society to monitor information abailable regarding CCSVI developments. Kudos to CTV for informing Canadians, and persons around the world of the subject of CCSVI in MS. Shame on the MS Society if you do not sufficiently fund immediate research into CCSVI.

From  josef  on  January 19, 2010

If you really want to make a difference organize in local groups and spread awareness and interest in ccsvi. I invite anyone around the Montreal area to join our group: http://www.facebook.com/group.php?gid=272147049088

From  unlalmutesilt  on  February 11, 2010

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From  WomanInTheWhiteCoat  on  February 22, 2010

I am a researcher. I have dedicated my work to helping endMS. I do not work for "BigPharma" and I am not some out-of-touch person in a white coat. In fact, if we happened to meet at an MS Society event, you would realize that I am just like most of you: I donate my hard-earned money to the MS Society and am very committed and passionate about ending MS. Every MS researcher I know wants to see the end to MS; we are committed to being a part of that process. As such, we are committed to doing our "due diligence" with all potential MS causes and treatments, including CCSVI. It takes high-quality, rigorous research to yield high-quality results. The MS Society has supported CCSVI research in an unprecedented way so that this research can be done. We all - researchers and the MS Society, too - want to see an end to MS. And we all want to see it as soon as possible! Sadly, many people take advantage of desperate people to make money or fame; a quick internet search yields many supposed "secret" treatments and "cures" for MS - but most are 'snake oil' (aka expensive placeboes) that are only available for outrageous prices, and yet they lack any scientific backing. Some, sadly, are outright dangerous. But desperation can drive desperate acts. Unfortunately, the tone, content - and outright hostility - of some of the comments on this board reflect the misinformation about CCSVI. These things also reflect the understandable emotion and desperation behind the intriguing but as-yet-unsubstantiated/poorly defined CCSVI research in MS. Now, I am not saying that CCSVI is "snake oil". Rather, researchers know that rigorous study is needed to evaluate the bold CCSVI claims that, quite frankly, have been blown out of proportion by the media. Please inform yourselves about the reality of the current state of knowledge - and lack thereof - about CCSVI. Here is some great information about what the MS Society and MS community are doing about CCSVI: http://www.mssociety.ca/en/research/medmmo_2009102 The MS Society has supported CCSVI research in an unprecedented way. We - the folks in the white coats - will also continue to do strive to do the highest quality research to endMS as quickly as possible. If we let hype and irrationality divide us, we all will lose. It takes a team - to support the research and to conduct the research. Divided we will fail but together we will endMS. (NOTE: I have no conflicts of interest. I am not personally funded by the MS Society. I do not have any affiliations with any pharmaceutical companies or other MS organizations aside from the fact that I regularly donate to the MS Society of Canada).

From  SBroom  on  July 05, 2010

My father was diagnosed with MS five years ago and is in line for the CCSVI treatment which is coming up outside of Canada. His MS episodes are slowly becoming worse. Loss of vision, numbness in his limbs and various body pains have erupted in the past few months. We recently had a friend with MS receive the CCSVI treatment in Costa Rica on Tuesday. We were anxiously waiting for word on her outcome from the treatment as she has been wheelchair bound for the last 5 years and is 37 years old. A few minutes after the surgery she could move her legs and wiggle her toes. Just received word today, four days later, that she is now walking. How is this treatment not a headline on the MS Society's website as it is the closest thing to a cure that has been discovered to date! Victims of this disease are walking that were once wheel chair bound, numbness and severe headaches are now a thing of the past for treated patients. The MS Society is afraid of loosing there organization, the drug companies are concerned about loosing the cash flow, this is the delay in research and treatment being allowed in Canada. How is it that less developed countries are taking intiative. This procedure is practiced everyday in Canada but to treat a different disease, what do we have to reasearch? I hope anyone with MS has the option to receive this treatment at some point in time. I am very disappointed in the doctors, MS Society and government for dragging there feet. I look forward to what the CCSVI treatment will do for my father and will continue reading success stories about this treatment.

From  Andrew Hartshorn  on  August 07, 2010

I lost complete faith in the MS Society who went all out to condemn CCSVI treatment. As far as I am concerned, for what is a relatively inexpensive, and safe proceudre, the MS Society should have backed work up immediately. There can't be any danger , with relatively low costs for every MS suffere to get this treatment.

From  rebecawatson  on  November 08, 2010

I was diagnosed with Multiple Sclerosis back in 1983. I can hardly walk now and it seems my condition worsens every day. When I first heard about the Liberation procedure and its results from a friend, I thought United States would be the first to conduct the trials. I could never imagine the corruption involved. I ended up applying for this simple procedure in Poland and waiting.. The other options were to get it done in India. After researching the internet extensively, I came across http://www.ccsviclinic.ca/ . They are screening for CCSVI in Fargo, ND and have very affordable packages for the Liberation procedure in India. I called (404)461-9560 and spoke to their nurse administrator Lisa whose priceless support made me realize that we are not alone in the fight against MS. They are screening within the US and Canada, their medical travel package includes flight arrangements and help with the visas, world class accommodation and meals within their hospitals, the liberation procedure, a stent if needed, medications necessary, a site-seeing tour, Pre-and post-procedure supervision, Full medical file including copies of charts, screens, CDs of Venograms, blood work, EKGs, etc. Post Procedure Screenings, follow-up and consultation with surgeons for the next 6 months and so many other provisions Lisa told me about, I can’t recall however you might be able to find out more on their site.. http://ccsviclinic.ca/?page_id=564 . They are providing all of this at just $13000 as compared to the other companies that charge something like $20000 just for the procedure. You may also contact Lisa by emailing her at apply@ccsviclinic.ca or calling her on (404)461-9560. I am getting liberated mid- November and I am so very thankful to everyone at CCSVI Clinic for making this happen!

From  Leo Voisey  on  March 12, 2012

Stem cells are “non-specialized” cells that have the potential to form into other types of specific cells, such as blood, muscles or nerves. They are unlike "differentiated" cells which have already become whatever organ or structure they are in the body. Stem cells are present throughout our body, but more abundant in a fetus. Medical researchers and scientists believe that stem cell therapy will, in the near future, advance medicine dramatically and change the course of disease treatment. This is because stem cells have the ability to grow into any kind of cell and, if transplanted into the body, will relocate to the damaged tissue, replacing it. For example, neural cells in the spinal cord, brain, optic nerves, or other parts of the central nervous system that have been injured can be replaced by injected stem cells. Various stem cell therapies are already practiced, a popular one being bone marrow transplants that are used to treat leukemia. In theory and in fact, lifeless cells anywhere in the body, no matter what the cause of the disease or injury, can be replaced with vigorous new cells because of the remarkable plasticity of stem cells. Biomed companies predict that with all of the research activity in stem cell therapy currently being directed toward the technology, a wider range of disease types including cancer, diabetes, spinal cord injury, and even multiple sclerosis will be effectively treated in the future. Recently announced trials are now underway to study both safety and efficacy of autologous stem cell transplantation in MS patients because of promising early results from previous trials. History Research into stem cells grew out of the findings of two Canadian researchers, Dr’s James Till and Ernest McCulloch at the University of Toronto in 1961. They were the first to publish their experimental results into the existence of stem cells in a scientific journal. Till and McCulloch documented the way in which embryonic stem cells differentiate themselves to become mature cell tissue. Their discovery opened the door for others to develop the first medical use of stem cells in bone marrow transplantation for leukemia. Over the next 50 years their early work has led to our current state of medical practice where modern science believes that new treatments for chronic diseases including MS, diabetes, spinal cord injuries and many more disease conditions are just around the corner. There are a number of sources of stem cells, namely, adult cells generally extracted from bone marrow, cord cells, extracted during pregnancy and cryogenically stored, and embryonic cells, extracted from an embryo before the cells start to differentiate. As to source and method of acquiring stem cells, harvesting autologous adult cells entails the least risk and controversy. Autologous stem cells are obtained from the patient’s own body; and since they are the patient’s own, autologous cells are better than both cord and embryonic sources as they perfectly match the patient’s own DNA, meaning that they will never be rejected by the patient’s immune system. Autologous transplantation is now happening therapeutically at several major sites world-wide and more studies on both safety and efficacy are finally being announced. With so many unrealized expectations of stem cell therapy, results to date have been both significant and hopeful, if taking longer than anticipated. What’s been the Holdup? Up until recently, there have been intense ethical debates about stem cells and even the studies that researchers have been allowed to do. This is because research methodology was primarily concerned with embryonic stem cells, which until recently required an aborted fetus as a source of stem cells. The topic became very much a moral dilemma and research was held up for many years in the US and Canada while political debates turned into restrictive legislation. Other countries were not as inflexible and many important research studies have been taking place elsewhere. Thankfully embryonic stem cells no longer have to be used as much more advanced and preferred methods have superseded the older technologies. While the length of time that promising research has been on hold has led many to wonder if stem cell therapy will ever be a reality for many disease types, the disputes have led to a number of important improvements in the medical technology that in the end, have satisfied both sides of the ethical issue. CCSVI Clinic CCSVI Clinic has been on the leading edge of MS treatment for the past several years. We are the only group facilitating the treatment of MS patients requiring a 10-day patient aftercare protocol following neck venous angioplasty that includes daily ultrasonography and other significant therapeutic features for the period including follow-up surgeries if indicated. There is a strict safety protocol, the results of which are the subject of an approved IRB study. The goal is to derive best practice standards from the data. With the addition of ASC transplantation, our research group has now preparing application for member status in International Cellular Medicine Society (ICMS), the globally-active non-profit organization dedicated to the improvement of cell-based medical therapies through education of physicians and researchers, patient safety, and creating universal standards. For more information please visit http://www.neurosurgeonindia.org/

From  Leo Voisey  on  March 15, 2012

Stem cells are “non-specialized” cells that have the potential to form into other types of specific cells, such as blood, muscles or nerves. They are unlike "differentiated" cells which have already become whatever organ or structure they are in the body. Stem cells are present throughout our body, but more abundant in a fetus. Medical researchers and scientists believe that stem cell therapy will, in the near future, advance medicine dramatically and change the course of disease treatment. This is because stem cells have the ability to grow into any kind of cell and, if transplanted into the body, will relocate to the damaged tissue, replacing it. For example, neural cells in the spinal cord, brain, optic nerves, or other parts of the central nervous system that have been injured can be replaced by injected stem cells. Various stem cell therapies are already practiced, a popular one being bone marrow transplants that are used to treat leukemia. In theory and in fact, lifeless cells anywhere in the body, no matter what the cause of the disease or injury, can be replaced with vigorous new cells because of the remarkable plasticity of stem cells. Biomed companies predict that with all of the research activity in stem cell therapy currently being directed toward the technology, a wider range of disease types including cancer, diabetes, spinal cord injury, and even multiple sclerosis will be effectively treated in the future. Recently announced trials are now underway to study both safety and efficacy of autologous stem cell transplantation in MS patients because of promising early results from previous trials. History Research into stem cells grew out of the findings of two Canadian researchers, Dr’s James Till and Ernest McCulloch at the University of Toronto in 1961. They were the first to publish their experimental results into the existence of stem cells in a scientific journal. Till and McCulloch documented the way in which embryonic stem cells differentiate themselves to become mature cell tissue. Their discovery opened the door for others to develop the first medical use of stem cells in bone marrow transplantation for leukemia. Over the next 50 years their early work has led to our current state of medical practice where modern science believes that new treatments for chronic diseases including MS, diabetes, spinal cord injuries and many more disease conditions are just around the corner. There are a number of sources of stem cells, namely, adult cells generally extracted from bone marrow, cord cells, extracted during pregnancy and cryogenically stored, and embryonic cells, extracted from an embryo before the cells start to differentiate. As to source and method of acquiring stem cells, harvesting autologous adult cells entails the least risk and controversy. Autologous stem cells are obtained from the patient’s own body; and since they are the patient’s own, autologous cells are better than both cord and embryonic sources as they perfectly match the patient’s own DNA, meaning that they will never be rejected by the patient’s immune system. Autologous transplantation is now happening therapeutically at several major sites world-wide and more studies on both safety and efficacy are finally being announced. With so many unrealized expectations of stem cell therapy, results to date have been both significant and hopeful, if taking longer than anticipated. What’s been the Holdup? Up until recently, there have been intense ethical debates about stem cells and even the studies that researchers have been allowed to do. This is because research methodology was primarily concerned with embryonic stem cells, which until recently required an aborted fetus as a source of stem cells. The topic became very much a moral dilemma and research was held up for many years in the US and Canada while political debates turned into restrictive legislation. Other countries were not as inflexible and many important research studies have been taking place elsewhere. Thankfully embryonic stem cells no longer have to be used as much more advanced and preferred methods have superseded the older technologies. While the length of time that promising research has been on hold has led many to wonder if stem cell therapy will ever be a reality for many disease types, the disputes have led to a number of important improvements in the medical technology that in the end, have satisfied both sides of the ethical issue. CCSVI Clinic CCSVI Clinic has been on the leading edge of MS treatment for the past several years. We are the only group facilitating the treatment of MS patients requiring a 10-day patient aftercare protocol following neck venous angioplasty that includes daily ultrasonography and other significant therapeutic features for the period including follow-up surgeries if indicated. There is a strict safety protocol, the results of which are the subject of an approved IRB study. The goal is to derive best practice standards from the data. With the addition of ASC transplantation, our research group has now preparing application for member status in International Cellular Medicine Society (ICMS), the globally-active non-profit organization dedicated to the improvement of cell-based medical therapies through education of physicians and researchers, patient safety, and creating universal standards. For more information please visit http://www.theprofitron.com/bic/

From  Diana  on  March 15, 2012

I don't want to shatter anyone's hopes, but the CCSVI is not the answer. It does not work for everyone, and for those it does it's only temporary. The procedure will have to be repeated after 2 or 3 years and then it will have to be performed on a much deeper vein carrying more risks. It's also ridiculously expensive. I cannot begin to imagine the heartache for those who have shown improvement only to find it dissipate after a short time. As for the newer treatments, they are far more expensive than the abc's and carry far more serious and in some cases deadly risks. Why don't they come up with a more effective treatment that does not carry such deadly risks. Those of us with MS have enough health problems and should not be exposed to the possibility of more. A lot of us are on a fixed income and cannot afford the expense of these treatments. We need full disclosure on all our options, not just the "success" stories. The effects of MS make some of us a desperate people and I think we're being taken advantage both financially and morally. We're being used as guinea pigs.

From  cynthia  on  September 08, 2012

I began the Fampyra treatment to improve walking ability at the end of May , 2012 . The results are amazing !! Not only am I able to walk better and for a longer period of time , but I also have more energy and motivation to do things , So far , no side effects. Anyone else using this ??

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