The recent controversy about a new treatment for multiple sclerosis (MS) has raised questions about the role of patients and politicians in determining health research priorities.
In the past, the scientific community has generally determined what research is conducted.
However the public is increasingly demanding that they be involved in setting research priorities – the best ways of doing so are currently being debated.
The case of CCSVI and MS in Canada
In 2009, Dr. Paolo Zamboni, an Italian vascular surgeon, described a new entity in people with MS, which he called chronic cerebrospinal venous insufficiency (CCSVI). CCSVI is diagnosed with an ultrasound test and consists of abnormalities in the anatomy and blood flow in the veins of the brain and back. Zamboni claimed that CCSVI is a cause of MS, and that improving blood flow using a balloon or stent to remove vein blockages (known as endovascular therapy) improves MS symptoms.
Word spread within the international MS community about Zamboni’s theories and treatment, and patients began to report dramatic improvements after treatment for CCSVI. This led to positive media coverage and a growing buzz within the Canadian MS community about CCSVI and endovascular therapy. However, the vast majority of Canadian doctors who treat MS patients do not believe that there is sufficient scientific evidence to support Zamboni’s theories about CCSVI and MS. As well, provincial governments have been unwilling to pay for a procedure that might not be effective, and could potentially be harmful. Therefore, treatment for CCSVI is not available within Canada.
Many Canadians have travelled abroad to undergo an endovascular procedure at their own expense. They and their supporters have put pressure on their political representatives and governments to make this procedure available in Canada.
Initial response by Canada’s researchers
Public pressure focused a great deal of attention on CCSVI. In the spring of 2010, the federal Minister of Health, Leona Aglukkaq, asked the Canadian Institutes of Health Research (CIHR), the largest research funding body in the country, to assess the scientific evidence around CCSVI and make recommendations about conducting further studies. The expert panel’s report, released in August 2010, found that there was not enough evidence to proceed with clinical trials of treatment.
Reaction of the MS community
CCSVI has galvanized the MS community. Patients demanded research into this new theory of MS, and the MS Society of Canada directed their privately raised funds towards CCSVI research, and also set aside one million dollars to fund future clinical trials. The rapid response of the MS Society demonstrates how patients can directly affect the priorities of the organizations that serve their specific disease condition by raising private funds.
However, many MS patients were not satisfied with the position of the MS Society, because the Society did not advocate for an immediate study of endovascular treatment. They established their own groups to aggressively advocate for access to CCSVI treatment through social media, the conventional media and the political process. The impact of these advocacy campaigns was felt widely, with the House of Commons even having a debate about access to endovascular therapy and research funding for CCSVI. Some politicians also disagreed with the CIHR recommendations – for example the government of Saskatchewan issued a request for proposals for a randomized trial to evaluate endovascular treatment of CCSVI.
Who should determine priorities for public funding of health research?
The CCSVI controversy has raised interesting questions about the role of patients and politicians in determining health research priorities.
The concept of ‘equipoise’ has been used to help determine when it is ethical to conduct a randomized trial of a treatment in which some participants receive the treatment and others receive usual care. For equipoise to be established, first there should be good reason to believe that the treatment will work, because participants will be exposed to the risks of the treatment. Second, there should be enough uncertainty about the treatment’s benefits that it is ethical for some of the study participants not to receive the treatment.
Traditionally, decisions about equipoise have been made by experts. In the case of CCSVI, the CIHR Scientific Working Group felt that the risks of treatment, even within a clinical trial, could not be justified because it was not even clear that CCSVI causes MS. On the other hand, many MS patients have travelled outside the country at their own expense to undergo an endovascular procedure, and are demanding clinical trials.
Thus, in the case of the CCSVI controversy, it appears as if patients and experts have very different opinions about whether or not equipoise exists. Who should decide?
Experts and the public
Some say that because of limited research funding, scarce public funds shouldn’t be spent on studying treatments pushed by advocates that have scant scientific supporting evidence.
However, because their tax dollars are supporting publicly funded research, there is a growing movement to consult and involve patients and the public in research. David Sackett, a physician and leader in evidence-based medicine says that “research in general is becoming more responsive to patients” and that researchers are increasingly involving patients “when designing research and dealing with patient-led disease organizations and agencies.” However, Sackett warns that while patients, the public and researchers all have “a strong legitimate right to make strong proposals about where research ought to go” they also “need to be careful that they are not in a situation where they have decided what the answer [to the research question] is before the answer comes” through the research process.
The James Lind Alliance in the United Kingdom brings together clinicians, patients and their caregivers to articulate research agendas that are important to patients. They state that “the pharmaceutical and medical technology industries and academia play an essential role in developing new products. However, their priorities are not necessarily the same as those of patients and clinicians. For this reason many areas of potentially valuable research are neglected.” For example, they recently studied research in osteoarthritis, where 80% of the studies are related to pharmaceuticals. They found that patients and clinicians had relatively little interest in the usual studies of drugs for osteoarthritis of the knee, but wanted more rigorous studies of the effects of physiotherapy, surgery and educational and coping strategies.
There is no equivalent to the James Lind Alliance in Canada. Interestingly, a recent external review of the CIHR recommended that it increase methods for “public and patient participation/input in all its processes from prioritization, through advising on appropriate study endpoints and funding decisions to trial steering groups.” Ian Graham, the Vice President of Knowledge Translation and Public Outreach notes that for the CIHR, which is comprised of thirteen institutes, engaging citizens “is not a one size fits all approach, and that different institutes engage citizens in different ways” ranging from including community members on boards and committees, to engaging citizens in strategic planning and priority setting to having integrated knowledge translation funding opportunities that require researchers to engage knowledge users as equal members of the team. Graham notes that “there is sometimes a disconnect between the problems researchers focus on, and the topics or questions that patients want research conducted on” and the CIHR is making efforts to better engage with the public and patients, as there is a sense that “citizens and patients will increasingly be seeking to be engaged and participate in decision making at the clinical and research funding priorities level”.
The Toronto Health Policy Citizen’s Council is a research-led group of citizens who were brought together to deliberate on issues of health care priority setting. They met in November 2010 to consider whether or not treatment trials for CCSVI should be undertaken in Canada. The majority of citizens supported publicly funded trials, but a significant minority felt that public funds should not be spent on such studies until there is better evidence showing that CCSVI is more common in people with MS than those without MS. The full report of their deliberations is available here.
Recent developments
Nearly a year after their initial meeting, the CIHR Scientific Expert Working Group met in June 2011 to review the most recent evidence, including the results of a systematic review of studies evaluating whether CCSVI occurs more frequently in people with MS. This review found eight relevant studies, but the results were inconsistent among the studies. When the results of all studies were combined, CCSVI was more frequently found in people with MS than those without MS. However, because of the variation in results, the researchers (including Andreas Laupacis, one of the founders of healthydebate.ca) concluded that more high quality studies are required before it is conclusively known whether CCSVI is more common in people with MS.
After their meeting, the CIHR modified their earlier position, stating that they would support a “Phase I/II interventional trial”. However, details of the trial have yet to be released.
In late September, the government of Saskatchewan announced that their call for research proposals to study CCSVI treatment “did not result in a suitable research proposal.” Therefore, the government announced a partnership with a clinical study of CCSVI taking place in Albany, New York, and has set aside approximately $2 million to pay for about 90 Saskatchewan residents to participate.
The comments section is closed.
Lorna, This is an IRB approved “Observational Study” that Dr. McDonald is doing to follow patients before and after they have come back from going abroad for this procedure. Just don’t want you to get your hopes up if the media failed to report the facts about this. Dr. McDonald has not been given the “green light” to do a trial including the procedure yet. However, this is a huge stpe to start collecting the data and I hope he gets to do one of the Federal Trials but that is still years away if it happens at all and isn’t just lip service from our Federal Health Minister.
We actually heard some interesting information about CCSVI treatment yesterday on our local radio, Peak FM in Barrie, Ontario. They spoke about Dr. McDonald, in the Barrie Vascular Clinis (where I was tested last fall). What we heard was that he now is authorized to begin a trial of 250 people,
hope this happens soon.
Compare the cost of the various MS drugs, (many thousands over time, again & again) – mostly ineffective), to the cost to perform anigioplasty, ($1,500.00) approx.. The use of this treatment is simply too logical & it looks like it won’t be held back much longer.
Imagine the savings over time if this treatment could prevent disability in young people.
This is really a great article Karen. You have really hit the nail on the head with this.
There are about 75,000 in Canada with MS. We come in all shapes and sizes, different backgrounds, different educations, different IQs – you name it. We are a mixed bag of sorts and we come with mixed symptoms and the symptoms are widely differing even when they have a common link. I cannot urinate without using a catheter; others need to urinate every 5 minutes and some are not bothered with either extreme. Some of us walk fairly well; others are totally wheelchair dependent. We often go through extremes of disability for short periods only to return to normal for periods of time. Similar things can be said for every symptom. Consequently, a large number of people think we are faking it, drunk, lying, looking for sympathy and attention and that attitude is often found in the doctors we see. They have been known to diagnose us as mental patients, clumsy, malingerers, or with any number of “autoimmune” diseases before they finally settle on MS. I personally have been hearing one or the other of these things for most of my 65 years. I have been prescribed drugs that are addictive, intended for psychotics, placebos, anti- seizure medication or told to go home and get over it (whatever that is supposed to mean).
After an MRI made it fairly clear that I had MS, my new MS neuro, who had never seen me before, talked over me every time I tried to tell him about my most recent flare up. He knew! He was the doctor; I was just the patient. I knew nothing! My visit was a total hour of insults. Without hearing a word from me and with no evidence of epilepsy, he prescribed me an anti seizure medicine. Lucky me! Had I been seen as anything but Secondary Progressive, I’d have been fed Tysabri – that was that clinics preferred treatment at the time. It is both deadly and useless.
The good old days are gone and so are the rules and morals that doctors back then had to work with. Some of the doctors we have to deal with include those on government advisory boards.
Add to this that because of the exalted position other doctors, hospital administrators, politicians and etc. have given them, rightly or wrongly, they hob nob with others in their financial class. Furthermore, and judging from the fear we run into on a daily basis with our other doctors, they have become the class bullies, the medical terrorists, (ask any MSer) and their territory includes us all. I mention MS but the same holds true among cancer victims, Parkinson’s victims and others.
So for those of you who do NOT have MS or do NOT know anyone with MS, try to be a tad understanding of people who have no good reason to trust doctors and other medical persons based on their prior experiences. We have a lot of years and many instances of discrimination at the hands of others including doctors. In fact, I am surprised at how many MSers do not automatically lay it at the professions door but are more specialty restricted with their distrust. It is not easy having MS. There are the physical symptoms and there are the social problems that follow you wherever you go.
I have no idea how long I have had MS but I do know I have been “clumsy” all my life. I am 65 years old. My time is running out and I do not want to live the rest of my life getting worse and becoming even more dependent than I already am. Forgive me for wanting to speed things up. And about those risks – for me there aren’t any risks – I am already dying so let’s either get this fixed or let me die trying. Either is acceptable to me. Another 10 or 20 years of what I am living now are not acceptable.
And to my fellow MSers – try to be patient with non MSers too. They have no idea! While a group of doctors have been lying to us, they have also lied to the general public and to their fellow physicians. I like the idea of socialized medicine – I helped vote it in all those decades ago. But we should have added some safeguards that we didn’t – we had, until then, no good reason not to trust our doctors. Now we do. There are boatloads of evidence – start by checking out Michelle’s link.
Now what we need are the honest doctors to speak up and stop allowing a few medical bullies to turn you into their accommodaters. I would hope you outnumber the scam artists.
Jeremy,
If it helps would you like to send me an email I will gladly send you a document the a Canadian Citizen put together showing alot of conflicts of interests in Dr’s who sit on the MS Society of Canada and CIHR panel of experts. This was all available on the internet just took my friend some time and effort to connect the dots.
walshfarm@hotmail.com
If anyone else on here wants to see this document I’ll gladly send it to you too because I am sorry if I knew how to post this Document for the world to see on here I would!
Michelle, my comments to Mark do not in any way deny that some physicians are in a conflict of interest. As a medical ethicist, I’m well acquainted with the sins of the pharmaceutical industry. My point to Mark is that conflicts of interest are a very serious matter, so allegations should not be made lightly. Most importantly, simply being on a committee with “drugs” in the title is not the same as being in a conflict of interest – many committees with “drugs” in the title exist solely to protect the public from negative effects of pharmaceuticals. It is important to find out what those committees do, and what else the physician does. In this case, one of the physicians who was “questioned” is well known for publishing research linking opiate prescription practices with hundred of deaths in Ontario in the last few years. It’s safe to say he is probably not on any pharmaceutical companies’ Christmas card lists.
Under the circumstances, it is unreasonable, unfair, and disrespectful to insinuate a conflict of interest when there is no good reason to think one exists. Indeed, far from promoting an environment where open discussion can flourish, accusations and insinuations (for that is what they are) stifle discussion and create an environment of resentment and hostility. Not to mention it alienates people who, if not already on your side, are at least open to hearing your point of view.
Auto immune? How is that possible? Why don’t we try to understand the finding of doctor Prineas:
http://www.ncbi.nlm.nih.gov/pubmed/20035511
Is that not an EVIDENCE?
MS Patients are left with a great deal of distrust for the MS Researchers/Neurologists; and rightly so. They have shown the $ signs in their eyes. For many, this trust will never, ever be regained. I think most people do look into their own illnesses, and learn a great deal about treatment options. I’m sorry that I didn’t dig deeper into Multiple Sclerosis many moons ago. I stupidly trusted the Researchers/Neurologists. This experience has taught me a hard lesson; I have had to turn my back on a few physicians (one of them was quite innocent, and a good person).
Judy Butcher
If having proper blood flow relieves the many symptoms (fatigue, headaches, balance to name a few) that pwMS suffer daily, angioplasty should not be refused. It’s a procedure done every day here in Canada. To say it’s unsafe for pwMS is simply not true, wouldn’t that then mean it’s unsafe for everyone. Someone please make a decision here, either do the trials that you are so insistent on to have the scientific evidence or start treating people here at home.
YEAH … what’s the real deal? I KNOW it’s those drugs that keeps them their jobs PERIOD.
http://www.healthiertalk.com/docs-and-big-pharma-sitting-tree-k-i-s-s-i-n-g-2111
If 3 of the 4 “core team of physicians, policy advisors and researchers” are intimately linked to DRUG committees or Agencies isn’t it possible that there may a be a conflict of interests with CCSVI research ? Are you just buying time or will this vote really have some influence somewhere with decision makers who can finance research ?
Found when clicking on about us (http://healthydebate.ca/about-us/team-bios)
“DR. LAUPACIS…advisor to government (he was the first chair of the Canadian Expert DRUG Advisory Committee)”
“DR. IRFAN DHALLA… Dr. Dhalla serves on the Committee to Evaluate DRUGS”
“DR. TERRENCE SULLIVAN…His current commitments include roles as the Vice Chair of the Ontario Agency for Health Protection and Promotion and the independent chair of the Canadian Agency for DRUGS and Technology in Health.”
Wow Mark! judging by the sudden flurry of thumbs down – you hit a nerve. And here I thought they had no feelings at all. I stand corrected.
No, it’s not being voted down because he hit a nerve, it’s because the accusation could not be more off-base. Mark accuses Irfran Dhalla of being in league with pharmaceutical companies, because he found a committee Dr. Dhalla sits on that has the word “drugs” in the title. That’s absurd reasoning, even by internet standards.
Even the most cursory research would have shown that far from being in cahoots with big pharma, Dr. Dhalla is perhaps best known for his research linking widespread prescription of OxyContin for non-cancer chronic pain with an alarming number of deaths. That doesn’t sound like research that would be done by a shill for big pharma, does it?
As for Dr. Laupacis, he is among the researchers who identified a higher rate of CCVI among those with MS. But we can’t trust anything he says, because he sits on a committee with the word ‘drugs’ in the title… Honestly, there is a worthwhile discussion to be had here, don’t drown it out with nonsense.
We got to this stage of mistrust and paranoia legitimately after decades of being fed a lot of lies and useless drugs by our doctors. Some of those doctors know the truth but allow themselves to be cowed by a few, mostly MS neuros. Others have just joined the gravy train offered by the pharmaceutical companies. You will forgive us MSers living with this paranoia, especially here in Canada but we live our miserable lives thanks to a few MS neuros who rule the roost in Medicineland. A huge number of doctors who allow themselves to be cowed by these control freaks (who are especially evident in the realms of MS and other “autoimmune” diseases and in the Cancer arenas) are equally responsible. MS has affected just about every area of my body so just about every type of doctor has been involved somewhere along the line. That is a humongous number of doctors. But I do not hear any of them speaking up and out about the state of affairs in Medicine. Ever try to take a doctor to court for malpractice? I have. I saw three separate doctors after a bungled cancer operation. All three had similar diagnoses but when asked to testify to their diagnosis in court, they all said no. It would be a death toll on their own place in the medical hierarchy. A bigger lot of gutless wonders probably does not exist.
If I rob a bank at gun point and you are the driver of my getaway car, the law will hold you partially responsible for the entire unpleasant affair. If my MS neuro plies me with useless drugs that could kill me (or if he doesn’t help me at all) and I thereafter die, why should all the other doctors who knew I was going to get worse or die from this treatment but who did nothing, said not one word against the murdering doctors, not also be held responsible?? I think they should. They were born with tongues to speak and brains to think logically with but they are not using them. All doctors who do not want to get lumped in with the medical bullies need to speak out, loud and clearly. But they do not. So, sorry if they get included in my disgust. If you are not part of the solution, then you are a part of the problem.
If these doctors listed above have these jobs, i.e. government advisor, drug evaluation etc. they are not speaking loudly enough against the status quo. This makes it very difficult to see that they are not, in fact, part of that status quo. The issue of MS involves a goodly part of the globe. One doctor here or there whispering against the bullies is not going to be heard or remembered. At this point in time, we need to hear them loudly and in concert with all the others who do not agree with these bullies. MS is taking my sight but it hasn’t had any effect on my hearing and I am listening. I don’t hear much, well except from you Mr. Petch. I hope they have the courtesy to at least thank you for taking their part.
I haven’t ACCUSED anybody of anything Mr Petch. I merely made some observations and asked some simple questions. I don’t believe my reasoning is absurd as you put it. My reasoning is the same as many other people with MS. We want to feel sure that big pharmaceutical companies are not influencing research on CCSVI.
I have obviously researched Dr. Laupacis and appreciate his replying without dismissing legitimate doubts as nonsense.
The only thing that is absurd is the virulence of your reply. And is it NONSENSE that this very subject is to be found in the prestigious British Medical Journal :
“Prevalence of financial conflicts of interest among panel members producing clinical practice guidelines in Canada and United States: cross sectional study”
http://www.bmj.com/content/343/bmj.d5621
This is a healthy debate site !
Who said “we can’t trust anything he says”, you did !
The only one trying to drown out discussion is you, with your suppositions. So you don’t think the word “Drugs” is important to this debate, well that’s nonsense even by internet standards. There are many subjects to debate around CCSVI. I have MS and I believed I have the right to ask questions even if they are uncomfortable.
Oh come now, Mark, don’t be coy. You were not innocently asking honest questions, you were openly insinuating a conflict of interest, based on nothing more than the appearance of the word “drugs” in the names of committees the members of this site on. You couldn’t even be bothered to find out what those committees do. Sorry if you were offended by my use of the word “absurd,” but I could think of no better term, and still can’t.
Personally, I take the implication of conflict of interest pretty seriously. If I was going to imply that someone was in such a position, I would want to be very sure that there was good reason to think so. I would especially want to make sure that there was nothing in the public record that would establish the opposite.
You are quite right that this is a site for healthy debate. You certainly have the right to ask questions. But the flip side of debate is that I have a right to point out publicly when you make an error in reasoning or a baseless accusation.
Jeremy, in response to your second reply. I’m a little too old to be coy unless you are just trying to be sarcastic. I was not insinuating anything, I asked the question. There’s a subtle difference there Jeremy. I wasn’t offended by the word “absurd” just surprised by the this inappropriate word that you still can’t find a better term for.
Yet again, there was no implication, I asked a question, quite simply I thought. I’m afraid I can’t make it any more simple for you. DR. LAUPACIS clearly understood and replied. Now, Jeremy, if I ask a question I obviously take it seriously and I am well aware that this is public. Did you point this out because you thought I may not have understood, or perhaps you may be trying to threaten or scare me.
Your argumentation seems quite childish, Jeremy, and apart from being aggressive and menacing I really don’t understand why you are getting involved when DR. LAUPACIS is quite capable of answering questions for himself. I suppose I must now repeat myself as you didn’t understand. DR. LAUPACIS said himself :
“So,… do the three of us interact with PHARMACEUTICAL COMPANIES, technology companies and governments? Absolutely.”
In view of recent studies (and here I repeat myself) such as :
“Prevalence of financial conflicts of interest among panel members producing clinical practice guidelines in Canada and United States: cross sectional study”
http://www.bmj.com/content/343/bmj.d5621
I believe it to be quite legitimate to ask the question ! There is no error in reasoning or a baseless accusation. Just a straightforward question that has already been answered by the interested party. That’s not you Jeremy.
And by the way, if you have MS, Jeremy, what is your point of view on the subject ? Why not put in a comment of your own ?
You are absolutely right that Dr. Laupacis can and has spoken for himself. My intention was never to speak for him. As I’ve said, I take issue with what I perceive to be reckless accusations.
I’m sorry that you find my responses aggressive and menacing, and that you think I might be threatening you. I’m also sorry you think my arguments are childish. Personally, what I find childish and aggressive is throwing around what I perceive to be insinuations of conflicts of interest with insufficient regard for whether they have any basis in fact. Clearly we see the world very differently.
And, since you asked, I do not have MS. From wording of your question, I get the sense this means that you don’t think I’m entitled to an opinion, but I’ll offer one anyway. I support clinical trials in Canada to evaluate the effectiveness vs. risks of Zamboni’s liberation therapy for CCSVI. I hope the therapy proves effective for many with MS. If clinical trials show that it is an effective treatment, I will be overjoyed to finally have a weapon against MS. If it can’t be shown to be effective after independent review of clinical trials, I will conclude that it shouldn’t be performed in Canada.
I realize this differs from the view expressed by some on this page. Those for whom MS therapy has failed utterly are angry and frustrated, and desperately want a treatment that works. They have openly stated that they are willing to assume the risks associated with the therapy. Some of those individuals are not interested in trials and simply want access to the treatment.
In advocating for trials, rather than immediate approval and open access, I am not denying that many who have had the procedure report improved (sometimes radically improved) symptoms. Rather, I am acknowledging that some that have had the procedure have not enjoyed the same benefits, and that a small handful have died from complications. By advocating for clinical trials, I hope we can establish not just whether the procedure is effective for a large number of people, but also identify those individuals for whom it might work best, so that those with MS can have the best information possible when weighing the risks for themselves.
As the editorial team of healthydebate.ca we do not usually respond to comments because we do not want to influence the discussion. However, we wanted to respond to comments suggesting that some members of our team have a conflict of interest relating to the story on research funding.
A commenter raised concerns about our links (past and present) with the Committee to Evaluate Drugs, the Canadian Expert Drug Advisory Committee, the Ontario Agency for Health Protection and Promotion and the Canadian Agency for Drugs and Technologies in Health. The first two committees recommend to publicly funded drug plans in Canada which drugs should be paid for out of the public purse. About half the time, the recommendations are NOT to pay for the drugs from the public purse. The latter two agencies are independent, and issue reports and provide advice about a variety of health care and public health issues, some drug-related and many not drug-related.
The only one of us directly involved in MS research is Andreas, who is a member of two Data Safety Monitoring Boards for Novartis, for which he gets paid for his time – one for fingolimod and the other for a drug for MS that has not yet been licensed. The role of the Data Safety Monitoring Board is to independently monitor the results of the trials while they are underway, and to recommend changes to the studies should there be concerns about patient safety. Andreas is also the principal investigator of a grant from the Canadian Institutes of Health Research to conduct a systematic review of the peer-reviewed literature regarding CCSVI and MS, for which he is not paid.
So,… do the three of us interact with pharmaceutical companies, technology companies and governments? Absolutely.
Do we also interact with patients, health care workers, hospitals and the public? Yes.
Are our views influenced by these interactions? Undoubtedly.
Do these interactions mean that our views are biased? No.
Do we think that the views of physicians who are paid for treating patients with CCSVI should be ignored because they are paid for providing the treatment? No.
It is impossible to be involved in health care without interactions with all of the various players involved in health care. The main focus of our discussion should be on the topic at hand.
I appreciate your response very much andreas laupacis. There are many who are not a stand up person like you! Unfortunately there are few with your morals. Many doctors dole out drugs knowing ONLY what the drug reps have presented to them. Many DO have other agendas than having credibility.
For example recently the Sorono case … http://freepdfhosting.com/543bcc781b.pdf. This is not new and this will continue to happen until there are proper regulations are made. There are no suites against others mentioned in this suit .. yet. BUT why are they even mentioned in this all then?. I do not see a liable suite regarding the alleged parties… known as CMSC (Consortium of Multiple Sclerosis Centers) helping out Dr. Bowling specifically. So it sure makes us wonder and be sceptical on what is true and what is deceptive.
All we want is the truth. Where are those who are like you? Why are we not getting more factual responses? I HOPE one day soon this will be addressed by those who are not addressing our concerns. Until then we will question credibility and transparency. Thank you for this Healthy Debate. It is appreciated very much.
I HAD CCSVI TREATMENT DONE 16 MONTHS AGO AND I REALIZE BLOOD FLOW IS ONLY PART OF THE M.S. PROBLEM BUT WHAT A BIG PART….THINK OF ALL THE MONEY I SAVED HEALTH CANADA AFTER MY TREATMENT….I AM NO LONGER ON ANY SO-CALLED M.S. DRUGS AND DOING GREAT WHY WITH ALL THE BENEFITS AND SAVINGS [DRUG MONEY] THE HEALTH DEPT. HAS NOT EMBRACED THIS….
It is beginning to appear that saving public money is of the least importance. Judging from the slow response by both Federal and Provincial governments, it is completely unimportant. They say “safety” is the issue. Funny but safety is not the issue where drugs like Tysabri, which has killed some and made others very sick and done no one any noticeable good, are concerned. Indeed, the very doctors who they go to for “expert” advice, are the very same doctors pushing these UNSAFE MS drugs. In fairness to those doctors, they would be unemployed if the rules were not so one sided in their favour. (Oh! What I wouldn’t give for a sarcasm font! LOL)
BTW, that use of ‘funny’ is as in depraved, not as in HAHA.
I am very happy for you Daryl – hopefully one day, I will be able to join you in what is obviously a better quality of life. May you and your ‘placebo effect’ live long and prosper. :o)
I spent 11 years in a university environment observing the pettiness, the unwillingness of researchers in all fields, to take in another possibility, if it potentially challenged their position…it is the nature of the beast to want to be exclusive. So embracing Dr Zamboni’s premise is a hard pill to swallow, particularly if you have a grant from a major pharma producing MS treatment drugs.
More importantly, if the quality of life is improved and life expectancy extended isn’t it worth a try. Suppose it was an alternative treatment for cancer would there be this amount of debate. Just think about the years, and the research, and the deaths and grant monies this disease has consumed over the last 60 years with NO 100% guarantee of success. Just hope and a willingness to try. Doesn’t MS deserve the same consideration
Thank you.
Neurologists should be ashamed of themselves considering there was an article in 1988 in the Journal of Neurology, Neurosurgery, and Psychiatry 1988;51:260-265 that they already knew of vascular damage in multiple sclerosis that was discovered back then and then they did nothing but now attack Dr. Zamboni, who has taken these studies on further: SHAME! SHAME! SHAME! When will Neurologists set their big egos, aside to mean what they said when they took their oath as a Doctor?
If venous angioplasty is so risky then why were over 50 000 done last year in Canada?
Guess that means all angioplasties should be stopped then.
I have the scientific evidence that since my procedure I now have no active lesions in my brain. That is all I hoped from doing this was to help slow this MS Monster down because NOTHING else does that. Especially for those of us in the more advanced progressive stages of MS. I had nothing to loose and everything to gain because I know the higher you move up on the EDSS scale means a 10 is you die from MS complications.
For 2/3 of us who have had relief with some symptoms that is also pretty good odds and this has greatly improved our Quality to our lives.
I think once the truth comes out on why this procedure is being so blocked in Canada many will be going to an all inclusive vacation to a jail cell for a very long time. We all know which ones have opposed this procedure and have a conflict of interest in this. MS patients are wiser than the Neurologists give us credit for.
I see this as a two sided issue like a coin. On the one side the science needs to be done to see how this does tie into MS so that hopefully early intervention can drastically change the course of this awful disease but on the other side who cares if it helps MS or not if a person has blocked veins why can’t an MS patient be fixed here in Canada like most other Canadians can be right now?
“You never know how strong you are until you have to be”
MS Patients are getting stronger and louder because more come back from going abroad for optimum bloodflow and feel better. So rest assured we are not going away all you naysayer because these are our lives we are fighting for and for so many who can’t fight .
There have been far too many success stories of CCSVI not to pursue this faster/harder. It would be FAR more cost effective to do this. Canada is looking like a third world country. Enough with the stall tactics and lets get on with the business of healing! The “boomers” will need more medical assistance, let’s take some of the burden away.
I remember when Dr. Zamboni appeared on Canadian TV with his Liberation treatment. I remember even more clearly that one Canadian neurologist had an immediate and insulting reply. A Hoax! Bee sting therapy. I was left with the same sense that this neurologist had not listened to one word said about CCSVI or the treatment any more than he or his fellow neuros had listened to any MS patients, I was seen by one of his fellow doctors who talked while I was talking for the entire visit. This neurologist could not have possibly heard a word I said.
I would be surprised to find an MS neuro who had even a smattering of understanding of what MS fatigue is like – it is NOT the same as the physical fatigue experienced after running a marathon. In fact I would be surprised to find an MS neuro who understands any of the symptoms of MS. Lesson #1 should be “Listen to what the patient says”. THEY are the ones experiencing it – not the guy who wrote the text for their university studies, not the pharmaceutical companies who have one main purpose and that is to make money. Were that not true, we would still be on the course we were on sixty years ago where treatments and sometimes cures were being discovered fairly regularly. Now it is like we are out in the middle of the Sahara without camel or water i.e. we MSers are dying slowly, painfully and without hope.
Me thinks our Medical scientists are protesting too much and too loudly. And they are spending too much time in the company of the pharmaceutical companies who, by the way, sell us drugs that cost between $1300 and $4,000 per person per month. They also stretch the truth. Their lab mice do not have MS. No one knows what causes MS so how do they replicate it?? Think about that for a minute or two. If they knew what caused it, they might by now know how to treat it and our Canadian neuros do not know what causes it or how to treat it and unless they are REAL medical wizards, they do not know how to replicate it either.
Millions are taken in each year in donations. Millions are wasted every year of taxes earmarked for research. Billions if you look at the global picture. Some Sunday, take a drive around town and check out the digs these “scientists” live in. Living above what their income should be? I think so. Gee, the CEO of the MS Society – a charity I remind you – takes $299,999.00 off the top of the donations and/or tax money as salary. And they do not want us talking conspiracy?? What else do you call it? A scam? Absolutely! Legitimate business? Not a chance!!! What thugs and bums do to some of us with guns and knives, they do to us with lies and useless drugs. They are Medical Malingerers! And they apparently do it with the blessing of our elected officials. My MS is beginning to slow my fingers down and destroy my posture, i.e. I am about to fold in two at the waist, or I would write more. Lord knows, I have more to say but I’ll let up for now.
Should patients have a say? You can bet your sweet bippey they should.
HEAR, HEAR Karen Copeland! Thank you for such a thorough explanation on how it really is in our world. AND yes it is too bad these neuros refuse to listen but sure want to push those drugs no problem. If you don’t comply you are told to leave. They only have one course … DRUGS. This is NOT TRUE. What happened to that fork in the road? They refuse to go down the NON DRUG road.
The reply I got …
“”Clearly you have no idea of how the review was conducted, or what a systematic review even is. Keep up the conspiracy theories.””
Tells me volumes. Clearly this person has no compassion what-so-ever. AND they are not conspiracy theories any more. THEY ARE THE TRUTH. People who come up with such comments are obviously part of the so-called conspiracy to begin with. Now they have been outed this is all they have.
Hmmmmm I wonder if this will be posted? Being a fair and an expressing our opinions do count. How else can we get heard without bias?
Nice to read a reasoned and balanced perspective on this important issue. Of course patients and the general public should have more input into health research priorities, and there need to be forums where a civilised and reasoned dialogue between public and researchers can take place. Although CIHR does engage the public in several different roles, overall the show is still driven very strongly by researchers. Setting up something like the the James Lind Alliance in Canada would be a good start, and could be done using electronic media.
With respect to the Zamboni treatment, the best possible trials are necessary, if only to protect MS patients from a risky surgery that may turn out to be ineffective. The same applies to other fad and unproven therapies for serious illnesses.
Scientists who are worried about increased public input should take comfort from the enormous support from the public for health research, as shown in survey after survey. Indeed, were the public to be more engaged, and the researchers to be more responsive, support for research would be even greater.
When will we have independent review—without the interference of the autoimmune paradigm and their pharmacological gate-keepers?
Clearly you have no idea of how the review was conducted, or what a systematic review even is. Keep up the conspiracy theories.
Not to dis-respect you but you would gather more respect for your reply if you used a real name.
Multiple Sclerosis diagnosed have had to much information hidden from them for too long & for you to hide your name continues along the same line as they are trying to stop from continuing in the future. They seem to live by the old adage “Nothing to hide, nothing to fear”.
The “CCSVI for MS advocators” are comprised of many very well educated people that can & will match wits & information with many of the experts that the Canadian government has retained for “expert advice” (CIHR & MSSC).
It is writings like these links below that add to the already mistrust of the Canadian government “supposed to be” MS experts.
http://www.healthcanadaexposed.com/www/Health%20Canada%20Exposed/default.asp
http://www.healthzone.ca/health/article/1068099–big-pharmacy-s-influence-feared-in-canada-s-patient-care-guideline-authors-says-study
http://www.bmj.com/content/343/bmj.d5621.short
Obviously the wrong people are reading this and the votes are skewed. If people with MS read these comments all of the comments would be positive. CCSVI treatment research is being taken care of in Europe and the pharmaceutical companies are hopefully moving on and finding out how they can make money off of CCSVI treatment. This truly is the answer for quality of life for those of us that have multiple sclerosis.
in innovation processes, usually new products are a the result of combining new insights in the needs of people, technologies or methods that can be protected by IPR and business models.
For innovation in the medical domain, one needs to ask oneself to what extent is there space for new ideas that fall outside the interests medical-industrial complex. (the combined forces of medical researchers in hospitals and pharmaceutical and other industries)
On top of that, the Canadian medical field is very conservative in embracing ‘out of the box thinking’. This causes a process that is – despite its reputation of a world class leader in medical research – stifled with procedural and institutional interests.
In electronics industry and even policy development, the inclusion of end users in the development of advanced products and services has become a standard, and there is no reason for the medical industry to not adapt the feedback of users, beyond guinea pigs as testing, in the development of new products, new policies and research priorities.
The medical world needs to embrace the current emerging movement of patients as a force for good, rather then remaining in their ivory towers
OK, this is blunt and cynical – I know. But I think this topic asks generally for some vigorous discussion.
I no longer believe in the “research enterprise”. It is a failure. Hundreds of millions of dollars are spent each year – for what? – so that people can pursue their pet idea, to enrich the industrialmedicalpharma industry (and it is), to perpetuate the hogwash publish or perish doctrine of the universities and their promotion policies. All of this has very little to do with health.
We have a pretty good idea of what makes a healthy population – maintain a normal weight, avoid excessive transfats, stop smoking, regular exercise, control salt intake. But does the population of the western world do this? No. Instead we have an industry that now seeks to treat the diseases of the excesses of the western world and to diseasify our humanity.
It seems that every area of medicine has 3 great questions. In orthopaedics they are – what combination of cells and substrates are needed to be injected into the subchondral plate to cause new articular cartilage growth?, what factors can be injected into fractures to ensure healing?, and what substances are necessary for neural regeneration? – everything else is merely nibbling around the edges. I assume it’s true in some form for all other domains if people are honest. So why are we not taking all of our collective minds and wisdom and putting that resource or even a tenth of it into these three questions? See paragraph one above.
At the end of the day, I’m tired of the false homage paid to the idea of research – that idea, however noble, was sold out long ago. Now it’s a sham.
Social media is bringing increased public involvement into medical research will result in greater accountability and greater transparency. It will also result in small, underfunded researchers with interesting results bringing their discoveries to the attention of patients without going through the normal gate keepers. The current conflict about CCSVI is between those who advocate for process and methodology (“science”) and those who want positive clinical outcomes (often dismissed as “placebo effect”) would have never taken place had it not been for the ability of a researcher like Dr. Zamboni to bypass all the multitude of gatekeepers and bring his results directly to the attention of the millions of MS patients. As a result MS patients are deciding for themselves the amount of risk they are willing to assume to find relief from their suffering. They are ignoring professional advise, particularly if they sense that those giving it have a conflict of interest. Neurologists (who stand to loose the most) are demanding double blinded studies for a minor outpatient procedure and playing up the few and far between negative results. MS patients are not only demanding clinical trials, they are demanding immediate access to the Liberation procedure based on the ever growing empirical evidence that there is significant though temporary relief from MS symptoms. The key issue to patients on how to improve the duration of the Liberation therapy needs to become the focus of research . Double blinded studies are needed when drugs are taken, especially for long periods of time as is the case with MS. For fixing blocked veins, that is restoring normal blood flow to insist on double blinded studies seems like a delaying tactic. For major operations like an amputation, transplants, there are no double blinded studies.