Could Canada cause multiple sclerosis?

The cheeky rebranding of multiple sclerosis in Canada raises the fair question: why are rates so high here?


 
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Photograph by Natalie Castellino

Photograph by Natalie Castellino

Could Canada cause multiple sclerosis? That’s one takeaway from a new campaign being rolled out by the Multiple Sclerosis Society of Canada that brands MS “Canada’s disease” based on data that the country is home to the world’s highest incidence of the incurable degenerative condition. “Welcome to MS nation,” one billboard reads. “World leader in hockey, maple syrup and multiple sclerosis,” the EndMS.ca website claims. Some messaging appears designed to quash the country’s appeal as an immigration destination: “In Canada, you have a greater risk of developing MS than in any other country,” the campaign reports, noting risk jumps for those who immigrate. The whys of this dubious distinction remain unanswered: “Is it our climate? Our diet? A lack of vitamin D?” No answers are given. But, as with all advertising, hope is extended: “We’re getting close to understanding why.”

The campaign’s directive, “What Will You Do: Flee or Fight?” plays on Canadians’ willingness to take on a challenge, says Owen Charters, the MS Society’s chief marketing and development officer. Those who click “flee” on the website are greeted with the “bawk, bawk” of chickens and links to tongue-in-cheek factoids about countries with a lower incidence of MS (of Mexico: “It’s a macho country, so consider packing at least two sleeveless shirts”) and a Government of Canada website where one can renounce Canadian citizenship. “We wanted to have fun,” says Charters. The “fight” option links to “personal fight stories” of people with MS, reference to vitamin D and pregnancy as possible preventative factors, along with ways to contribute to the society. A social media campaign beginning in May will goad people to “prove how Canadian they are,” which, if Canada is “MS Nation,” means pledging to the MS Society.

“Flee or Fight” is the society’s first fundraising push since its 2008 “endMS” initiative to build a cross-country MS research network. That campaign was completely overshadowed by rogue research from outside the MS establishment that thrust the disease into headlines and pitted the society against its core constituency. Dr. Paolo Zamboni, an Italian venous specialist whose wife has MS, posited the condition was caused by chronic cerebrospinal venous insufficiency (CCSVI), or obstruction of bloodflow in the neck and chest; his small, 65-person study indicated venoplasty, a procedure available in Canada—though not for MS—improved symptoms and seemed to even eradicate disease progression. Zamboni’s hypothesis contradicted the theory of MS that has underlined research for more than 60 years: that MS is an autoimmune condition in which the body attacks itself, destroying myelin, the sheath that coats axons in the central nervous system. CCSVI became a polarizing flashpoint in media and online: MS neurologists denounced Zamboni’s research; MS patients, frustrated with a status quo focused on disease-modifying drugs, embraced CCSVI as a catalyst for activism.

The MS Society of Canada, the official voice of MS in the country since 1948, came under fire from its members when it failed to advocate for CCSVI treatment to be made available in Canada or for clinical trials be fast-tracked (it contributed funds to a clinical trial currently under way). Coverage of people with MS protesting outside legislatures and thousands travelling offshore for CCSVI treatment with wildly varying results posed a PR nightmare for the society. Donations, the society’s major source of funding, fell. But it also provided the public’s first glimpse of the frustrations of the 100,000 Canadians living with MS, a diagnosis that has baffled scientists since French neurologist Jean-Martin Charcot classified “la sclérose en plaques” in 1868. That descriptor describes the scars, or lesions, in the brain and spinal column that characterize the disease. How they get there and their role in disease progression are still unknown.

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There is no definitive test for MS, commonly diagnosed between ages 15 and 40. Misdiagnosis is a risk. A 2012 study conducted at Oregon Health and Science University found 75 per cent of specialists reported seeing three or more misdiagnosed MS patients within the previous year; of 600 misdiagnosed patients, 280 were on MS drugs, many of which cause serious side effects and can cost more than $50,000 per patient per year. Concern has also been raised that infectious diseases, including Lyme disease, are being misdiagnosed as MS; MRI scans for both appear similar. Lyme disease is curable with antibiotics; being given immunosuppressant drugs, as many MS patients are, worsens it. The National MS Society in the U.S. has added information about Lyme disease to its website. The Canadian MS Society has none.

Fighting MS, like fighting terror, is waging war on an indeterminate enemy. Symptoms and disease progression vary so widely from person to person that it might seem logical to see MS as resulting from varying causes. But as Richard Swiderski, an American medical doctor with MS writes in his 1998 book, Multiple Sclerosis Through History and Human Life, medicine has always assumed that MS has one cause: “The cliché that multiple sclerosis is idiosyncratic and affects each person differently overlies an assumption that it has a single cause.”

The “flee or fight” challenge is a way for the MS Society to reclaim MS messaging, says Charters, who refers to MS as “the brand.” The society was aware the new motto could be read as a critique of those who left the country for CCSVI treatment. “It did cross our minds,” he says. “But the challenge was to find a different story and a reason why MS is relevant to the broadest possible population.” The 2013 MS atlas, produced by the Multiple Sclerosis International Federation, provided “the hook,” he says. Canada ranked first with 291 cases per 100,000 people, followed by Denmark (227), Sweden (189), Hungary (176), Cyprus (175) and the U.K. (164).

The atlas indicates MS incidence has more than doubled in Canada in five years. The first MS atlas, published in 2008, ranked Canada fifth at 132.5 per 100,000, behind Hungary (176), Slovenia (150), Germany (149) and the U.S. (135). Why the number rose so steeply, compared with a 10 per cent rise in global MS incidence, is unclear.

Within the MS community, the real “MS nation”—one as diverse as the Canadian nation—the campaign has met with a mixed response. A man diagnosed with primary progressive MS questions “MS nation”: “When ‘nation’ is put at the end of something—‘Ford nation,’ ‘Leaf nation’— it’s positive; it’s saying, ‘Yeah, MS!’ ” Others question the politics behind the “flee-fight” dichotomy: “It’s [their] way or the highway,” says Linda Hume-Sastre, a CCSVI activist who lives in St. Catharines, Ont., who experienced major benefits from CCSVI treatment. “I had to flee to get treatment for a vascular condition I didn’t need to leave the country to get.” Toronto resident Penny Reid objects to the aggressive tone: “It feels like schoolyard politics,” she says. “Am I a chicken if I don’t donate?”

Reid, who was diagnosed with MS 13 years ago at age 30 and stopped working two years ago, is active in the MS community. She supports the society, valuing the connections it provides. “A lot of people remain alienated,” she says. “Some say, ‘It’s all we have,’ which is not a ringing endorsement.” Reid believes Canadians are aware of the prevalence of MS. “Everyone knows someone with MS.”

But many don’t understand the realities of living with the condition, or the fact that many live in the MS closet due to fear of discrimination. Eighty per cent of people with MS in Canada are unemployed. “I would like to see the MS Society creating awareness around the variability of MS symptoms and the struggles of those living with MS,” Reid says. But that runs contrary to the ethos of the society’s fundraising machine. It’s structured to emphasize the positive, if not the accurate, as seen in its “Branding and Graphic Standards” booklet distributed to MS chapters in 2009. All depictions of MS must be upbeat and never depressing or uncertain: “Avoid photos that showcase despair or dependency by people touched by MS,” it instructed. Grimmer realities of living with MS were to be given a positive spin: “Photos with mobility aids should evoke hope rather than pity and be empowering.”

But the less photogenic realities of MS touch all Canadians. The direct costs of caring for and treating Canadians with MS is estimated at $139 million annually, with drugs accounting for almost half of that. The high costs of MS drugs, which are priced on the assumption they delay disease progression and relapses, have come under fire. A study published in the journal Neurology in 2011 reported that the cost-benefit ratio of MS drugs was wildly out of whack and concluded there was urgent need for discussion on how to bring costs down.

Evidence is also mounting that the many commonly prescribed MS drugs don’t slow disease progression as promised. A 2009 study by the Cochrane Collaboration found the efficacy of interferon medication on exacerbations and disease progression in patients with relapsing-remitting MS was “modest.” Research from the University of British Columbia published in the July 2012 Journal of the American Medical Association echoed the finding.

Canadian neurologist George Ebers, one of the first to show an environmental link to MS, has publicly denounced benchmarks used in MS drug clinical trials for not measuring what matters to MS patients, their families and their caregivers: the onset of long-term disability as measured by secondary progressive disease, the point when people need walking assistance or wheelchairs. In a blistering 2013 address to the European Medicines Agency, Ebers revealed that his 25-year tracking study found the frequency of MS relapses doesn’t affect longer-term disability (he found relapses are often associated with better outcomes). Lesion activity as measured by MRIs have “zero value” in predicting disease progression, he said. Focus on “what can be most easily measured epitomizes the last 25 years of MS research,” Ebers concluded, calling for marketers to stop telling people that drugs prevent disability: “They don’t.”

Still, the new MS Society campaign bristles with hope: “If any country will find a cure for MS, it will be Canada.” That statement isn’t based on breakthroughs, per se, says Charters: “It’s an extrapolation—a researcher from the U.S. said that.” He expresses optimism that investment will pay off: “We have the highest research spending per capita on MS in the world,” he says (in 2013, 15 per cent of the society’s revenues went to research and clinics). Charters talks about getting “to the bottom of the mystery about why Canada is the perfect storm for developing MS.” Yet the society’s research will be directed to therapeutics, specifically drugs to treat the progressive form of MS, he says. “We want to increase engine speed at the far end of research spectrum, the part that’s about treatments.”

Ebers, who recently retired after more than 40 years in medicine, is pleased to see MS finally framed as a Canadian health crisis, he tells Maclean’s, though he doubts Canada has the highest incidence. Scotland’s rates are higher, he says. “A lot has to do with a country’s ability to report.” Canada is the perfect research incubator to investigate causality, says Ebers: “Identifying what environmental factors have changed in Canada is key,” he says. “It has nothing to do with genes. Canada has to sort out what’s happened in the past 50 years that has lead to doubling or tripling of the rate of MS.” MS has been a crisis in plain sight for decades, Ebers adds. “We’ve seen rising rates since the ’30s. We have a disease that costs a couple of million a lifetime; it’s gender-specific, with three times as many women being diagnosed. It should have been treated as a four-alarm fire.” And as those diagnosed with MS know, that fire still rages.

Update


 

Could Canada cause multiple sclerosis?

  1. I saw a research article, but have not been able to find it since. It showed a correlation of areas of low Magnesium in the soil and water to areas of high MS rates. Magnesium is needed by the immune system, the autonomic system and various other body functions. It is also used to process Vitamin D which is correlated to MS. Processing of Magnesium is also partly regulated by our biological clocks, which are affected by the varying length of days in the North. Again, the autonomic system/vagus nerve needs Magnesium, and is involved in swallowing (people with MS have trouble swallowing), breathing, (people with MS have the ‘MS hug’–trouble breathing) and cardiac problems. The cardiac problems may be involved with inflammation and poor blood pressure regulation, resulting in collapsed veins leading from the brain. A lot of people in the MS community point to magnesium as a connector to all of the aspects of MS, including immune system problems and CCSVI. The MS society needs to expand its narrow focus on drugs, a horse that they have been riding too long with little result in decades. If it is not really leading anywhere, maybe they are on the wrong path.

    • It would be fantastic to compare the rates of Magnesium in the soil and water in Saskatchewan, since that province has a severely disproportionate amount of MS cases. Anyone whom I have ever met from Saskatchewan has 1 or more family members with MS. I think the answers definitely lie in that province. I have always worried about their air quality and pollution coming from Alberta and definitely the different types of agricultural run off. Geography, just being landlocked and up north, does that play on it? In general auto-immune diseases are very poorly understood and MS like other auto-immune diseases need more attention because they are all on the rise. A great article and definitely non-profits have taken a a business-like turn in terms of compensation and purpose.

  2. THANKS ANNE FOR THIS INFORMATIVE ARTICLE…….

    Of course the MS Society comes up with this corny ideas just before they are about to start their spring fundraising.

    Don’t forget a few simple facts about them:

    1. Last year they spent 40% of their $ 50 million on fundraising.
    2. Last year they spent another 40% on salaries.
    3. There are people working at the MS Society of Canada who make more than our Prime Minister…..

    So in my “not-so” humble opinion, they are living high on the backs of the sick……which in itself is sick !!!!!!

    Their contribution to RESEARCH in their last fiscal period DECREASED by $1 million dollars, whilst their salaries INCREASED by pretty much the same amount.

    Do they deserve your hard earned dollars? Read the REAL FACTS and decide for yourself.

  3. I was forced to flee Canada for the ONLY treatment available for me with secondary/progressive MS, because of the hypocrisy of the MS Society of Canada. They SAY they care about quality of life but then put up roadblocks to ensure Canadians with MS could not receive venous angioplasty for CCSVI in their home country, even though other Canadians can have the same procedure.
    There are no treatments available in Canada for progressive forms of MS. When the possibility of relief of some symptoms arose, the MSSC had their “specialists” advise the government to not allow this treatment–even though there was nothing else to try! Since my treatment, I have had more than 4 years of improved quality of life and am so glad I chose to FLEE the MS Society of Canada!

  4. Thank you Anne Kingston for this great article.
    You said it and then some! It is too bad the MS Society refuse to look at alternatives until now (maybe). Don’t be fooled by their promotions on diet, supplementation and excersise. It is only because people are more savvy and do ask questions on their direction of research. What they are going to do is waste more money on things we have already been doing … no thanks to this Society. Especially for those of us who are not qualified to use their ineffective, outrageously priced drugs.
    If only CCSVI had been given a chance there would be so many more of us with a better quality of life. Can you imagine the money flow that WOULD of happened. Fat chance for this now.
    I always look forward to your writings Anne. Thank you again.

  5. Thank you Anne for another insightful article. As a fellow MS’er said, MS is not a disease, it is a business. We can also say that the MS Society is not a charity but a business. This odious “flee or fight” ad campaign is fear mongering at its best. It is insulting and when the fundraiser in charge says that they just wanted to have fun I cringe. No neurological condition is “fun” nor can it be made “fun”. I agree with Curious George, the MSSC needs to get off the horse they have been riding for over 60 years since they have nothing to show for the ride – except a very good bottom line for those who life off MS. We cannot forget that MS is a $15 billion a year industry. It’s not a wonder that the MSSC doesn’t want to hear about CCSVI, diet, exercise, Vitamin D, magnesium or anything else that may disrupt the status quo. I feel very badly for those people who are still drinking the MSSC kool aid.

  6. Thanks for a great article Anne. I became disillusioned with the MS Society of Canada 15 years ago when they showed no interest in vitamin D and MS despite a large amount of evidence. I gave up all hope with their response to the need to properly investigate CCSVI and MS 5 years ago.
    As Anne points out, MS in Canada has becoming far more prevalent and one has to ask why hasn’t the MS Society done anything to stem the tide in the past 65 years. Their research record shows very little having been done in terms of prevention or determining causal factors.
    I refer interested parties to my essay on why MS societies are not acting in the best interests of persons with MS (http://www.direct-ms.org/sites/default/files/WhyNMSSNotActingInTheBestInterestsofPersonswithMS.pdf). I would also note that MSSC spends less than 15 cents of each dollar collected on research.
    For those interested in MS causal factors, I refer you to my published paper, The Multiple Factors of Multiple Sclerosis: A Darwinian perspective (http://www.direct-ms.org/sites/default/files/Embry-Darwinian.pdf)
    There is little doubt MS could be prevented and go the way of rickets if all children had an adequate level of vitamin D (100 nmol/l +) at all times. For some reason MSSC does not advocate for such an obvious preventative measure.

  7. Fight or flight? Take the flight! You cannot fight these duplicitous monsters. When we went to California a year and a half ago, my poor wife could barely walk to the end of the street (less than 100 meters). She had choking fits every other day, and random falls, “MS Walk” , couldn’t even stand with her arms outstretched without falling over, Couldn’t touch the tip of her nose with her right hand if her eyes were closed, she would miss! and a bunch of the other symptoms. Honestly, (I grew up on a farm and I know sickness very well) I gave her a year to live, at best. A day after angioplasty, she could stand on one leg and do a yoga pose! I never expected anything like this. A miracle. We do not know why angioplasty works supremely well for 1/3 of ms sufferers but banning it will keep it that way. (The surgeon in California calls it an “autonomic system reboot”) and he pre-selects patients who are most likely to have success (those with bladder and bowel problems, balance problems, circulation problems, MS hug, choking, morning headache etc. AND starting in the last year, he combines the angioplasty with stem cell treatment! (Stem cells from the patient are delivered back to them right after the operation). I did not find out that 2 successful angioplasty’s on people with MS were carried out in Victoria until after we returned. (To Victoria). Such a shame that monsters are in charge of our health care system. The radiologist who carried out the successful angios was due to be fired until embarrassment prevented it. A patient’s sister stood before the medical board and said that it helped her sister immensely. “Please don’t fire him”. One of my facebook friends recently got a Lyme diagnosis. So for 5 years, he was getting immune system suppressants for “ms”, the lyme must have loved that! And another one just found out he has a systematic yeast infection. He is having remarkable improvement now that he is addressing that problem. And that infection might even be the whole problem! And another, Dawn Skinner, 4 years after angioplasty. She has not a single symptom. Is she cured? And she kept great video records, on youtube. Is she cured? See for yourself. Does the MS society give a damn? Yes they do. They have tried to damn all those poor people to hell. They are worse than Burke and Hare, the famous grave robbers. At least Burke and Hare dispatched their victims quickly. Clinical trials are anything but quick.

  8. Error in the article- Professional hockey was created in Houghton, Michigan, United States, not Canada.

  9. You could substitute the words “Crohn’s and Colitis” for MS and much of what is written in this article would apply just as aptly.
    Canada leads the world in incidence of Crohn’s and Colitis disease, autoimmune diseases that attack one’s own body. Cases in Canada double the incidence of MS, which an alarming incidence of new cases in children under10.
    What is it about Canada that is making people so seriously sick? Even immigrants, with no family history of the disease, have an increased risk of developing Crohn’s and Colitis in Canada.

    • I can’t edit my comment, but mean “with an alarming incidence…”

  10. It is grossly unfair to characterize Dr Zamboni’s lifework on CCSVI as “rogue research.” Even if Ms Kingston is using this terminology to indicate his research is an “outlier”. this cannot be untrue as several others have produced evidence supporting his hypothesis.
    I have followed Zamboni’s publications and lectures for several years, and I have no doubt he is an honest, hard working clinician. It will be up to others to identify where he went wrong, but no one until Ms Kingston has suggested there was anything improper in his publications.
    In truth, the rogues in this sorry story are the members of the fifth estate who embellished the original findings to the detriment of serious research on MS. Single patient observations were given prominence if the results were positive, and many MS sufferers who reported no improvement with venous dilatation or stenting were ignored. Zamboni shoulders some responsibility for this fiasco – most prominent in Canada and Italy – but his sincerity cannot be doubted.
    I wonder if Ms Kingston and her fellow scribes and broadcasters are now ready to explain their ignominious role in this fantasy ?

  11. this doesnt even address the most important question. is the actual prevalence increasing or are we just not dying from other causes and getting better at diagnosing it?

  12. Hmmm, does Canada cause high rates of diagnosed MS. In a way, the answer could be yes… It could be through misdiagnoses made by our MANY complacent physicians. I know quite a few “MS patients” who have now had their diagnoses changed to Lyme disease and receiving proper treatment. These few physicians have actually taken the time and investigated their patients symptoms further instead of making each patient ‘fit’ into their current box of knowledge. BRAVO to these outstanding Doctors, for actually following through on the oath they took!
    Think about it, Canada has the “lowest rates” of Lyme disease yet the “highest rates” of MS…look into it.
    http://canlyme.com/2015/04/21/lyme-and-ms-having-the-same-etiology-kathy-cavert/

    • I agree with the misdiagnoses of Lyme as I was one of the many who was misdiagnosed. I have talked with 100’s Canada wide, who have been diagnosed with Lyme or co-infections. The trouble is they know a good thing when they see it. Face it, Its a billion dollar disease. They base their theories on an outdated money making idea. Our Canines are getting better treatment with better testing and medications. I don’t doubt that Neurologists are smart, but one as to ask why they haven’t looked into the similarities found in the scarring they both can leave. There are two reasons 1) They are not educated or 2) They do not want to lose the money, trips and perks, given to them. I would hope that they would take this to heart as pediatric MS is on the rise and children spend the most time out side. If they really cared and stopped with the childish money making ventures like END MS NOW or the Fee or Flight campaign. My bets on 2. How long can they hold on to this made for money theory?

      • Just to ad Lyme can be found in the vascular system which is why CCSVI worked minimally for me.

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