Saskatchewan Premier Brad Wall says his government is willing to fund clinical trials of a controversial treatment for multiple sclerosis, calling the “liberation” procedure an “avenue of hope” for patients stricken with the debilitating disease.
“We know there’s not unanimity amongst the various groups out there about this particular treatment,” he said Tuesday, “but we know anecdotally, and to some extent empirically, that there’s reason for hope here.”
Saskatchewan, with the highest rate of MS in the Canada, should be a leader in researching the possible treatment, Wall said. About 3,500 of the province’s residents have the disease.
Hmm, he wants to cut through political BS preventing people from getting the procedure here, but he’s likely going to make us all pay for it.
I say it’s a wash.
I think this is a positive step – more clinical research trials definitely need to be run before anyone can tell whether this is a ‘cure’ or treatment for M.S. and Saskatchewan can be proud of the role it will now play. Kudos to the Wall government.
I do wish people understood that those in the medical community aren’t urging caution and healthy skepticism because they’re in bed with big pharma, or don’t care about their patients because they are somehow ‘insensitive’ (quite the opposite). All invasive procedures carry some risk – It would not only be unsafe but also unethical to allow patients to undergo a procedure that simply doesn’t have the research to back it up as a successful treatment, especially in mass numbers. If it’s proven that the proposed intervention works, then that’s great. But if it proves to be bunk, well, you’ve just exposed a ton of your patients to unnecessary risk for no gain. Not to mention that placing all research funds into researching one treatment that might not work would delay other treatment avenues that might, which would harm people in the end – science can’t be beholden to the popular bandwagon.
Here’s hoping that this announcement will speed up clinical research results that will help us get these answers faster.
Ah, emotion versus science, this should end well.
I hope it will end well, though. I really do.
Curious though, that Dr. Knox or a named representative was unavailable for interview if this has an overwhelming chance of success.
As a medical student, I happen to know this procedure is widely panned thus far and needs *far* more research than has been done before we start even considering performing it. A neurologist I know spends more time these days explaining to his patients that this treatment is not a magical cure all than he can count.
Also, for human right’s tribunal “goodness,” an NL man has filed a grievance with the province’s human rights commission to get this highly unproven treatment:
http://www.thetelegram.com/Arts—Life/Health/2010-05-10/article-1452174/If-Im-denied-…-prepare-for-battle/1
It depends on how the study is done. It will not be a cure for all but if a significant proportion can be helped and it contributes to the body of science I don’t have a problem. The study is at least a year away and the team would have to be assenbled. It may not even take place in Canada although that would be nice.
this disease circle appears in Southern Manitoba and North Dakota as well.
the occurance is very similar to the highest Radon leakage area.
something that always struck me as curious.
My wife has secondary progressive MS and is likely going to die in the foreseeable future unless we can get something done. There are no drugs available for her condition, other than pain killers, which are largely ineffective.
It is fine to say, from a distance, that the Zamboni procedure is “unproven”. It is different when one is living with the condition. We are running out of time and are making plans to go to Bulgaria…at this point I do not care what it costs.
It makes me angry that the two basic procedures comprising the Zamboni treatment, an ultrasound scan and angioplasty, both done hundreds of times daily in Canada, are denied MS patients because combining the two is considered “experimental”.
Congratulation to Saskatchewan for having an open mind and an open wallet. It’s rather remarkable to see the lights on and shining brightly in the middle of somewhere.
More than seven years ago I had cutting edge brain surgery which turned out hugely successful. That after the usual put down by so called science and lay people.
Good for Premier Wall. Go with confidence into the future
Whats wrong with research? Until now the answer was always no to everything that had to do with this treatment.
Ask any MS sufferer and they would be willing to try anything. Many already have.
If a pharmaceutical company is making millions a year off drugs, many experimental, why wouldn’t they lobby to prevent this treatment? Always follow the money.
If we’re going to have 10 separate provincial fiefdoms in this country, this is exactly the type of experimentation and risk taking we should be seeing. Instead of waiting and waiting and waiting until we have unanimity across the country, individual provinces should undertake experiments and share the results. We’d learn faster, reduce suffering, and possibly even save money.
*
if the various iterations of government can give millions of dollars
to dubious enterprises like “palestine house”… you think maybe
they could spare a few bucks for researching this horrible disease
that affects so many canadians?
*
Hard to figure whether it’s a real effort to cut through the BS in medical research or not.
On the one hand …. nothing ventured nothing gained.
On the other … there are MANY charlatans and snake oil salesmen in scientific/medical research.
I say give it a shot … and keep a real close eye on the folks getting the funding.
If they step out of line one bit … nail their @sses to the wall…..
Go with confidence into the future Mel you have that right. I was at a park and a young man, early 30’s was there with his 3 year old. We started to talk and he has MS. Nice guy, good values it seemed and then it struck me. This young man may not see his son graduate or his grandchild. It was a remarkable feeling of waste. If he can have a better chance and it takes a little money and a wil
to make it happen, I’m for it.
The naysayers will say it builds false hope. If all you have is hope and a death sentence, hope is pretty good to keep up the fight.
Two years ago, an Italian study announced a dramatic benefit for patients with ALS using lithium. It was the most spectacular treatment result in all the decades of research on that terrible disease – worse than MS, I dare say.
Overnight, this information spread through the world and ALS sufferes demanded, and got, Lithium. They usually got this from their family doctors, since Lithium is pretty commonly available.
Meanwhile researchers tried to validate this treatment, and could barely recruit any patients because no one wanted to be the “placebo” arm of this “cure”.
Eventually, the appropriate research was done, with adequate patient numbers and controls and followup.
Result? Lithium was useless.
The parallels to the MS situation are striking.
Trials of the Zamboni treatment are ongoing. They should clarify the situation long before Brad Wall has to spend any Saskatchewan taxpayer money. But certainly this announcement will make him look good to voters, so its a win-win for him.
I understand that health care is a provincial concern, if Premier Wall wants to spend money on this and have it given as an “experimental procedure” perhaps with results not certain, it is his and the electorate of Saskatchewan’s concern, certainly not Ottawa’s or the other provinces.
Good on you Mr. Wall.
I say good for Canada in supporting medical research and new treatments. The procedure seems fairly harmless and if it is effective would be a huge breakthrough. How else would you have us attempt to advance? Science isn’t for certain, it’s a try and try again method, you can’t rip on anything that fails as a waste and silly…everything that we have..cars, planes, tvs, etc, etc, all failed at some point.
Either the government buys pharmaceticals or they buy this treatment…either way the tax payer is paying for people with ALS.
To further fuzzify the muddification…Where do state funded fertility treatments and on demand abortions fall on the priority scale versus experimental life saving techniques?
Just asking.
Syncro
I’m not opposed to funding research to determine is this process is valid (I believe there hasn’t been any valid studies to date) – it would be nice if other provinces chipped in, but… However paying for the actual procedure needs to wait until the results are in. That’s the trade off for a publicly funded health care system.
I think that Saskatchewan should “liberate” itself from Mr. Wall. This shouldn’t be a political decision so much as a medical/scientific decision. It seems to me that most experts are advising that caution be used as this could have tragic results. Is Mr. Wall ready to responsibility should this turn into a disaster?
That should read ” … to take responsibility”, sorry ’bout that.
Meanwhile back at the outhouse Dalton McGuinty refuses to follow suit and allow such a trial as the treatment, an ultra sound, scan and angioplasty is wayyyyy to experimental.
I have my doubts about this surgical procedure and would want to see a surgical placebo arm. This procedure reminds me of the great benefits that were once touted for internal mammary artery ligation for the treatment of angina. People had the surgery and felt remarkably better. Then some spoilsport decided to run a placebo controlled trial; the patients in the placebo arm had surgery but they just had an incision made in their chest which was immediately sutured. Both the placebo and treatment arms felt benefits from the treatment showing that, when it comes to placebo’s, surgical placebo’s are the most effective out there. I don’t know if one could get a neurosurgical placebo controlled trial past an ethics committee nowadays, but I’d be willing to bet that the placebo patients would feel much improved.
MS is not a disease that one can treat with surgery. MS is a northern disease and the most striking thing about living at northern latitudes is the lack of UV induced vitamin D production in the skin from October to April. Throw in the pernicious influence of the sunscreen lobby and one has a vitamin D deficient population with all manner of diseases as a result. Given the propensity for overprotective parents to cover their children with sunscreen from the moment they’re born, I predict a mass epidemic of MS and Crohn’s disease to sweep this country in the next 10-20 years.
There are also clinical trials going on using very high dose vitamin D for the treatment of MS and they are showing very promising results. Not much funding for them, though, as drug companies are interested in treatments that cost hundreds to thousands of dollars/patient/month, not something that costs pennies/month.
Back in the days when goiters were common on the prairies, I’m sure there were excellent surgeons who could excise the superfluous thyroid tissue and preserve parathyroid function. The the discovery that iodine deficiency causes goiters led to a much simpler preventative treatment. IMHO, the proposed surgical solution to MS is analogous to performing surgery for goiters while ignoring the much less exciting approach of providing supplemental Iodine to people. If Brad Wall wants to do something about MS, fund a large Vitamin D supplementation study which would be money far better spent.
3500 Saskatchewanians have MS? Brad Wall just won 10,000 votes.
And hopefully this procedure alleviates some pain, even temporarily.
Just FYI, this is close to home – my wife’s niece went to India to get this treatment and can walk after X number of years.
http://www.edmontonjournal.com/health/Liberation+treatment+leaves+Edmonton+patient+with+hope/3294139/story.html
In MB our gov’t was proud to announce increases in spending for fertility clinics, but is still not going forward with this MS treatment.
I’ve a friend who has MS, and seen the affects of an attack in real time, it is a nasty disease and when it is progressive it is like the drip, drip of water torture as everyday you know the next drip could lead to the end.
The government doesn’t seem to understand that the possibility of getting someone with MS back as an active member of society is at least as valuable to society as the birth of a child.
Good luck to those with MS in SK, get’er done!
I hope this holds promise for those who have MS, and Loki you are right, MS increases dramatically the further away from the equator you are.
Could the disease be related to socialist thinking–a result of the social gospel movement.
MS: Mentalité Socialiste.
Citizen X:
Forgive me for having a thin skin on this topic.
But having to drag my wife down the hallway countless times and spending a long time lifting her into bed, not to mention the other personal duties that I perform for her…I hardly think that this is a topic for misguided humour.
Perhaps it is just me…when it comes to MS, and the fact that this disease has turned our lives into shambles, I just don’t have a sense of humour at all…
Merely saying…
I, too, have heard this radical new procedure needs some more studying.
All I am saying is to proceed carefully.
larben’s precautionary advice @ 9:22 has merit, and is bolstered by loki’s always logical sage points of view.
Having spent the day in a tractor cab with the radio tuned to various talk shows, of course this topic came up more than once, with opinions by a myriad of interested parties- some with a profound personal attachment, others of medical/research/regulatory/ethical persuations.
Two points that gave me pause:
1)Inserting a large catheter in a small vessel near (in?) the brain is dangerous. Strokes and deaths will happen, says the expert;
2)Trials of experimental drugs utilize placebo’s to realize objective results. With this process, that’s not possible- you either get the surgical procedure, or you don’t, and you know if you got it, or you didn’t! So the how do you measure the results objectively?
And while I applaud Brad Wall for taking this issue to heart, I caution him on jumping in with both feet. Make sure you know what you’re doing!
don’t forget reader, the official medical community once thought microbes didn’t exist. and then that it wasn’t them that caused infection. and then in the days of Dr Paul Erlich http://en.wikipedia.org/wiki/Paul_Ehrlich that they would not respond to treatment procedures.
jist sayin’ . . .
Nevermind “palestine house”… try Bata’s Shoe Museum?
Good frickin grief!!!
Loki
Your comment about goiter disturbed an old scar.
My mother had such and a “team” intending to biopsy ended up removing it…..within months we had a funeral—serum hepatitis…Hep C.
14 months back….a diagnosed muscle spasm–which I had to diagnose as a busted rib….then another and another—meanwhile chest Xray after Xray….no rib Xrays…..because I SMOKE….then I got nasty and demanded rib X-rays—–7-8& 9 busted….then all manner of invasive tests including bone marrow…..then 6 weeks back I figured it out…maybe..a side effect of a heart-burn med…..perhaps it’s placebo effect but the ribs now seem to be kniting after a year.
Hope I’m right.
They haven’t given up on the cancer thing yet—got another CT scan slated shortly.
It’s good I’m sorta pragmatic.
One thing the AGW thingy has exposed……vested interests exercising authority. It is mandatory to maintain an open mind….and a healthy scepticism.
just watched the National and a woman who had the procedure done in Poland 4 months ago. She is feeling and functioning way better. The National will continue to monitor her progress.
“emotion versus science” – what part of clinical trials is not science?
“This shouldn’t be a political decision” – public health care means everything related to health care, from what procedures are done, by who, when, for how much, to who cleans the toilets and sweeps the floors is a political decision.
There was a lady from Edmonton who had this treatment performed in Poland last month. She was interviewed by Rutherford and said that it was very hard to get a radiologist on board here in Alberta just to do a follow up ultrasound. She said that her physical state had improved greatly, but it was disheartening to hear how our government was waiting to see results on the treatment.
So they want to see more clinical studies first, but aren’t prepared to do a measly ultrasound to help the studies.
I called and let our friend know to tune in to the conversation and I called her immediately afterwards. She was so ticked since she feels like a lab rat herself with the current treatments.
If there’s anything, ANYTHING, I support being done with my tax dollars it is RESEARCH.
With the proviso that any data/results be released into the public domain. Just like the Italian doctor did.
My FIL has MS. The whole family would like to know if this surgical procedure is of value or not.
Controversy arose over McQueen’s Mexican trip, because McQueen sought a very non-traditional treatment that used coffee enemas, frequent shampoos, injection of live cells from cows and sheep, massage and laetrile, a supposedly “natural” anti-cancer drug available in Mexico, but not approved by the U.S. Food and Drug Administration.
McQueen was treated by William Donald Kelley, whose only medical license had been (until it was revoked in 1976) for orthodontics. Kelley’s methods created a sensation in both the traditional and tabloid press when it became known that McQueen was a patient. Despite metastasis of the cancer to much of McQueen’s body, Kelley publicly announced that McQueen would be completely cured and return to normal life. However, McQueen’s condition worsened and “huge” tumors developed in his abdomen. In late October 1980, McQueen flew to Ciudad Juárez to have the five-pound abdominal tumors removed, despite the warnings of his U.S. doctors that the tumor was inoperable and that his heart would not withstand the surgery. McQueen died of cardiac arrest one day after the operation.
http://en.wikipedia.org/wiki/Steve_McQueen
And a BTW – I hope like hell it works.
With regards to the comment by beagle, the medical community (and the human race) has come a long way since the days people didn’t believe in bacteria and viruses. Modern medical decision-making is based on facts, science, and risk analysis. Physicians spend long years studying and practicing their lives away so that they are able to make those judgements to the betterment of other human beings. It is not an easy lifestyle and carries many hardships, despite what some may believe or see on TV. I know many physicians who put in the craziest of hours to not only dedicate themselves to their patients, but also to teach (quite outstandingly, i may add) the next generation of physicians. I admire not only their dedication to their patient’s best interests, but also their efforts to advance medical knowledge through research studies.
I myself have relatives and friends with family members affected (in some cases, severely) by Multiple Sclerosis, but I would never in good conscience advocate they undergo an invasive procedure (that carries with it a very real element of risk) without any proof whatsoever that such a procedure would offer them any benefit.
So many are quick to dismiss the medical community as quacks…to them I say, I doubt you will authoritatively rely on google to diagnose yourself the next time you should become ill.
I apologize for creating extended discussion.
When a certain doctor in Australia proposed that stomach ulcers and certain bacteria seemed to be associated, there didn’t seem to be a need for long term studies before the medical and pharma establishment quickly sought to trash his ultimately vindicated observations.
Perhaps the simple experimental surgical procedure for counteracting MLS also has similar trouble fitting into the present dogma but isn’t that in itself reason enough to demand a thorough unbiased investigation of the results of a significant number of surgeries?
Why dont we send a couple of unbiased surgeons over to where they do the procedures and follow the results? Would save us from having to do the same crap over again from scratch and save us millions. Or is medicare just squeezing out the last drops of cash from this disease before its shown to be something they were not even looking at? More treat the symptom rather than cure the disease philosophy.
Beagle rightly notes the lack of belief in bacteria among the medical community at one point. I should also note that Pasteur was not a physician. Sasquatch, sorry to hear about your problems with the medical system, but you’ve done the right thing by pestering doctors when they can’t come up with a satisfactory explanation for your symptoms.
What people don’t seem to understand is that medicine isn’t a science; medicine operates largely through consensus and hence is unscientific. Medicine is also hierarchic in that a specialist is automatically assumed to be more knowledgeable than a GP who is assumed to be more knowledgeable than a patient. Most patients who develop a rare condition and research it extensively usually know much more than their doctors about that particular disease. My job in such cases is to steer them away from charlatans and provide a global perspective to balance out their highly specialized knowledge about a miniscule area of medicine. Unfortunately a lot of doctors simply refuse to deal with such “problem patients”.
Medicine is an art that one picks up through apprenticeship with expert practitioners of the art; it’s a lot closer to the process of becoming an expert potter than training to be a scientist which anyone who can read and think logically can do. Scientists strive for complete objectivity; the most common impression of objective doctors that I hear from patients is “cold and uncaring”. Coming from a research background into medicine, I found it incredibly frustrating seeing what passed for “research” in medicine. In a true research environment, all that matters is if one can prove ones hypothesis through experimental findings and it makes no difference if 99% of scientists in the same field disagree with you. In medicine, one gets the interesting situation where one can be using the correct treatment for a patient and lose ones medical license because no-one else is using that particular treatment. As a medical student, in 1988 I had the temerity to suggest that pregnant women be put on folic acid supplementation to prevent spina-bifida and was told by the obstetrician that I was working under that this was far too risky a thing to do and my “reckless experimentation” based on animal studies would result in my not practicing medicine for very long. I now have similar disagreements with physicians regarding the doses of vitamin D that I recommend to patients. My experience has been that it takes 20-30 years for simple but unconventional treatments to make it from obscurity to the medical mainstream. It’s taken even longer to overthrow the cholesterol hypothesis vindicating Kilmer McCulley who did the definitive experiments disproving this hypothesis in the 1960’s.
Most doctors don’t like to stick their necks out because it’s risky hence they practice conventional consensus medicine. Those doctors that practice unconventional medicine need to be very well versed in the current medical dogma and be able to show evidence of why they’ve chosen a particular non-standard treatment for a patient should they be hauled up before an inquiry at their local College of Physicians. Medicine tries to be scientific by being “evidence based” but the vast majority of doctors can’t do conventional Gaussian statistics let alone statistics involving very skewed probability distributions. Doctors also seem to find it very difficult to deal with non-linear relationships despite the fact that most physiologic systems are non-linear or chaotic.
The reason that medicine works as well as it does is that most of what is done in medicine (by truly good physicians) is non-algorithmic and doctors do Bayesian statistics on an unconscious level. When I was a medical student I had a naive belief that it would be fairly straightforward to come up with some form of AI system to do medical decision making and found the task was far more formidable than I thought. Instead, I found it easier to rewire my brain so I could think like a doctor when seeing patients and try to find time to do real science when not practicing medicine.
It may well be that the venous congestion theory of MS will turn out to have merit. I’m skeptical and the way to solve this problem is to perform a proper double blind clinical trial. This means that every patient will have surgery but only half of them will have the treatment procedure done. This also means that every patient will be exposed to the same surgical risks and people getting the placebo treatment might die. Don’t hold your breath waiting for such a study to be done in N. America; maybe someone in India or S. America will do the study which will be as close to definitive proof or rejection of the efficacy of this technique as one can get. If such a study demonstrates that the real surgical treatment results in better outcomes than the sham surgery, then I’d be willing to refer people to a surgeon who performs this procedure. I’d also like to see a p value of 0.001 or better for statistical significance of the surgical treatment; doctors seem to think that p of less than 0.05 is significant whereas to me it just means that there’s a 1/20 chance that the results are spurious.
What I’d expect, based on years of dealing with patients wanting “alternative” therapies in Vancouver, is that both the placebo and treatment group would improve. The placebo effect is a major headache for drug companies doing anti-depressant trials as the placebo response there ranges from 40-70% depending on the structure of the trial. Quacks take advantage of this effect by promising results and being very confident in their methods. Also, when people pay for a treatment they do better than when the treatment is free. Most naturopaths optimize their treatment efficacy by marking up the cost of supplements they both prescribe and sell by 1000+% compared to the same product that one can buy at Walmart.
Finally, I understand why all Canada’s medical organizations who claim to represent all physicians have fallen for the AGW propaganda; they think medicine is scientific ergo consensus positions on climate must also be scientific.
Some of you are a bit unaware of CCSVI facts thus far and its relation to MS. There is a huge correlation between narrowed veins and MS. Using multiple scanning techniques done right it approaches 100%. The blood in MS patients is not draining properly in their veins from their brain. This vein drainage issue is not seen in non-MS patients health controls at even a close rate (25% vs 100%). The fact that it exists in healthy controls at all doesn’t imply anything, e.g. not everyone with a heart condition suffers a heart attack and some of those healthy controls end up with other brain related diseases or may yet get MS. This is a pluming issue in MS patients veins.
Having said that correlation is not causation but it has caused research to be conducted. When the veins are expanded to allow blood to flow properly, the MS disease progress appears to stop and symptoms are even known to reverse (if the brain damage done by MS is not already permanent due to brain scaring from long term damage).
The trouble with the procedure is two fold: 1) the veins often collapse, an inexperienced doctor may not be able to treat all vein flow faults (e.g. blood flow issues in veins due to fault vein valves not collapsing veins). The risk from the angioplasty procedure is minimal and is not considered experimental (except for some reason when applied to MS patients it suddenly gets labeled as such).
The placebo effect does happen with certain types of MS which is why double blinds should be conducted. However, the fact is that the placebo effect for MS patients is different with progressively aggressive forms of MS. Patients with aggressively progressing forms of MS rarely experience placebo effects for improvements because the disease is continuous and rapidly causes ever increasing damage to the brain. Yet, MS patients whose veins are successfully treated appear to halt progression where placebo effects are not known to be successful previously with these types of MS patients. To give an analogy, getting a vitamin shot for a broken arm won’t cure a broken arm – no placebo effect is possible.
Simply put, this is very promising research and more needs to be conducted. Kudos for the premier for conducting it!
To be clear, I’m not fan of socialized medicine. However, those who worry about the net cost on the tax payer should be aware of a few things before complaining. MS patients cost the public health care system and society a tremendous amount of money. They often have attacks that lead to hospitalization. They often become crippled leading to expensive long term care at an early age. Their drugs costs a small fortune and aren’t very effective. The cost in terms of lost in wages and tax revenue and disability claims are massive. A promising treatment like this should be done just in terms of potential cost savings alone! Worst case when the trials are done, we will know the effectiveness and then can judge if it should continue or not.
Now, the reason why doctors say this is not a cure is because the veins can block again and some vein issue can’t be treated. They also don’t know if long term the vein flow correction issue will correct MS issues. Some veins require stents to be used (little mesh tubes inserted in the veins) to keep veins open and flowing – which is where the risks go WAY up for this procedure if done. Those little stents can migrate into the heart requiring risky heart surgery (and death) plus we don’t know if stents meant for arteries won’t cause damage or blood clots. Even Zamboni who pioneered this procedure doesn’t recommend stents at this time.
Keep in mind, if you had an issue where you knew your blood was not draining properly from your brain and you faced being in a wheel chair or bed ridden with a feeding tub in short order, you might reconsider wanting this procedure. Granted you are at risk for any scam procedure when facing a life treating illness but this is one that actually has scientific merit although its still early.
Many Canadians are taking out loans to fly to foreign countries to pay to have this procedure done because to not have it done means they are disabled for life. The trouble is with that when they come home they have NO possibility of follow up (i.e. did their veins collapse). Worse, many foreign places use potentially dangerous stents. When Canadians come home they are told that if they suffer issues as a result of their foreign surgery they can’t get help here – including if they get blood clots (potentially fatal), and other issues. Canadians don’t even have the option to PAY to have the procedure in Canada – it is simply not allowed by social medicine even if you have the money.
Kudos for getting trials started Saskatchewan! I wish our premiere in Ontario Dalton McGuinty had guts like Saskatchewan. Clearly he’s okay letting MS patients suffer.
This issue is quite different from that of H. Pylori. I would argue that the issue isn’t whether or not studies should be funded and research be done, the medical establishment would clearly like to see this happen. No one is saying Dr. Zamboni’s treatment shouldn’t be researched. But most of the medical community is dead-set against subjecting people to unproven invasive procedures that carry very real risks, or diverting all funding to one unproven theory at the expense of other treatment avenues that may also yield fruitful results. On a side note, many in the medical community also have issue with Dr. Zamboni calling his unproven treatment the ‘liberation’ treatment, which prematurely raises false hope amongst desperate patients and their families.
As for H. Pylori, it is worth noting that Dr. Barry Marshall tested his theory on himself by drinking an inoculated solution – and not on others.
Today the Liberal health critic in NS urged the provincial government to make a commitment to clinical trials of this procedure, noting that, per capita, NS has the highest rate of MS in Canada.
http://www.cbc.ca/canada/nova-scotia/story/2010/07/29/ns-ms-saskatchewan-research.html
The NDP government isn’t buying in. I’m something of an agnostic on this question; after 35 years in universities, I’ve seen too much shoddy research undertaken because there was money on the table.
med student:
You should re-read my comment. Let SK choose one treatment. Let another province choose another. Then we get concentrated expertise on each treatment in each case, instead of increasing expenses and diluting talent by performing trials of all treatments in all areas. This is only advantage to our fragmented system of medical care; we should be embracing it instead of subjecting it to criticism.
med student:
You should re-read my comment. Let SK choose one treatment. Let another province choose another. Then we get concentrated expertise on each treatment in each case, instead of increasing expenses and diluting talent by performing trials of all treatments in all areas. This is only advantage to our fragmented system of medical care; we should be embracing it instead of subjecting it to criticism.
Loki, you describe very clearly the sorts of decisions/dilemmas physicians face in their work. And Robin, you describe very clearly the specifics of what this type of treatment for MS involves.
As a regular person who tends toward skepticism, unless my health problem is obvious like a broken arm, I don’t accept a doctor’s advice about certain drug therapies without thinking about it and researching it as best I can. I don’t claim that I’m particularly rational either. For example, I take medicine for mild diabetes but I don’t take Crestor for cholesterol because my cholesterol is not particularly high. The only reason my doctor suggests it is that, apparently there is a study showing that very low levels of cholesterol reduces risk of stroke. However, there seems to be enough concern about the use of Crestor as a preventative that I’ve decided not to take it.
If I were faced with an illness such as MS, I would be prepared to take some risks in order to have a shot at getting better. This would make me vulnerable to hype and charlatans. However, this particular treatment seems to offer real hope in exchange for what seems to be a reasonable risk. If I had MS, I would like the chance to have this treatment in a good facility, with skilled people, even though it may not do any good and even though there might be the risk that I might die.
The anecdotal evidence is piling up. Surely the people who have gone overseas to have the procedure done, and who claim to be improved, had their own doctors in Canada (and other countries) who could compare their state before and after.
Finally, haven’t there been successful attempts to harness the placebo effect to reduce the amount of drugs that have toxic side-effects to manage certain conditions. If the placebo effect works (when perhaps nothing else will) is that such a bad thing?
Like every other product or service, research should be funded on the probability of results. Should the government fund all medical research? No, but what it does fund it should have a vetting system to at least keep most of the snake oil salesmen away.
Loki has made many good points and is correct in that medicine is not exactly a science. Working in the cancer field I can say that there are a heck of a lot of things that are hard to explain, like the will to live, mind over matter, or why cancer affects different people differently.
I know that Canadians expect the government to pay for everything in Canadian health care but what is wrong with Canadians putting their own money into the system? Of course make it as viable financially as putting your money into any other investment vehicle or political party contribution. Here, clinics and hospitals are often named after noted folks in the field, etc., but if someone wanted to put say, $5 mill into a CF, MS, or Diabetes Research clinic why not name it after them and give them the tax break? We have to change our attitude towards our health system.
Med Student.
Never discount the power of ego to truly screw thinks up and many doctors have HUGE egos. (My mom was a head surgical nurse and has stated this to me over and over.)
As a dis-interested third party observer, it seems to the mainstream MS community (those without the disease) are heavily invested other theories as to the cause of MS. If this surgery cures MS, this could very well mean that they are WRONG and we can’t have that. Thus the example of bacteria and H. Pylori are on point.
If this surgery does relieve symptoms, is that not a good thing? Placebo or not? Would you rather condemn a MS patient to life as a cripple and eventual death rather than try something that has shown positive results? Especially given the relative low risks of complication?
Yes we need to study this procedure and yes we need to be careful about engdering hope. AND it is not an either/or proposition. This procedure may be tried and other treatments may be tried. But up to now, the medical community hasn’t wanted to at least try this.
People with MS are voting with their wallets and having this procedure done out of the country. Their is the start of the study right there.