A new study argues that social media and the Internet are so influential that they’re setting national research priorities. The study, by a group of Canadian doctors, was published today in Nature.
Multiple sclerosis is a devastating illness that, experts widely agree, is an autoimmune disease. But in 2008, Italian surgeon Paolo Zamboni submitted that MS was not an autoimmune disease but rather a vascular disease. “Brain blockages” were the real culprit behind MS, he argued, and symptoms could be alleviated by something he called a “liberation procedure”–the physical, mechanical widening of veins in the brain, known more technically as venoplasty.
Globally, among experts, this thesis was met with the round rejection it evidently deserved. Except in one place: Canada. A pair of mainstream media misjudgments apparently launched the craze: The Globe and Mail penned an article in late 2009, and then CTV followed with a segment on the treatment. But after those missteps, the Internet took over. YouTube, Twitter, and Facebook have become a social echo chamber among patient-advocacy groups demanding access to the unproven treatment. There are over 500 Facebook pages (including groups and events) dedicated to promoting the Zamboni procedure. Half of all Canadians know of the theory, according to one poll; articles appear weekly; tens of thousands have joined the ranks of the procedure’s supporters on the web. A national debate rages on about whether publicly funded trials should be conducted and whether MS patients should have immediate, publicly funded access to venoplasty. All for an unproven treatment that has been rejected by the scientific community.
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Looking at 7 years’ worth of data from England, researchers found that areas with a relatively lower amount of sunlight and higher rates of infectious mononucleosis also had relatively higher rates of multiple sclerosis.
Together, sunlight intensity and mononucleosis cases explained 72 percent of the geographical variations in multiple sclerosis rates across England, the researchers report in the journal Neurology.
Exactly what the pattern means is not clear.
The researchers speculate that low sun exposure, which leads to lower vitamin D levels in the body, may alter the immune response to the virus that causes mono.
That, in turn, might make some people more susceptible to developing multiple sclerosis, or MS.
More about Sun exposure, mono linked to multiple sclerosis | Reuters
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Researchers at the University of British Columbia’s multiple sclerosis clinic are working to establish standards of care for patients who have travelled abroad to receive a controversial — and as-yet unproven — treatment that widens narrowed neck veins.
The provincial government is providing the clinic with $700,000 for the next three years for a program that will also include a voluntary registry of patients in B.C. who’ve undergone the procedure and a system to allow health-care providers across the province to reach MS experts in Vancouver when dealing with such patients.
The treatment rests on the theory that MS is caused by a narrowing of veins in the neck that carry blood to and from the brain, a condition called chronic cerebrospinal venous insufficiency, or CCSVI. The procedure, dubbed “liberation therapy” by proponents, involves angioplasty or a stent to widen the veins.
Medical studies have been mixed about whether there is any link between narrowed veins and MS, and a U.S. study released just last week cast doubt on the theory.
More about The Canadian Press: UBC clinic to track patients who have MS ‘liberation’ therapy outside Canada
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Background: Chronic cerebrospinal venous insufficiency (CCSVI) was recently described in patients with multiple sclerosis (MS). A subject is considered CCSVI positive if ?2 venous hemodynamic (VH) criteria are fulfilled.
Objective: To determine prevalence of CCSVI in a large cohort of patients with MS, clinically isolated syndrome (CIS), other neurologic diseases (OND), and healthy controls (HC), using specific proposed echo-color Doppler (ECD) criteria.
Methods: Transcranial and extracranial ECD were carried out in 499 enrolled subjects (289 MS, 163 HC, 26 OND, 21 CIS). Prevalence rates for CCSVI were calculated in 3 ways: first, using only the subjects for whom diagnosis was certain (i.e., borderline subjects were excluded); secondly, including the borderline subjects in the “no CCSVI” group; and finally, taking into account subjects who presented any of the VH criteria.
Results: CCSVI prevalence with borderline cases included in the “no CCSVI” group was 56.1% in MS, 42.3% in OND, 38.1% in CIS, and 22.7% in HC (p < 0.001). The CCSVI prevalence figures were 62.5% for MS, 45.8% for OND, 42.1% for CIS, and 25.5% for HC when borderline cases were excluded (p < 0.001). The prevalence of one or more positive VH criteria was the highest in MS (81.3%), followed by CIS (76.2%), OND (65.4%), and HC (55.2%) (p < 0.001). CCSVI prevalence was higher in patients with progressive than in nonprogressive MS (p = 0.004).
Conclusions: Our findings are consistent with an increased prevalence of CCSVI in MS but with modest sensitivity/specificity. Our findings point against CCSVI having a primary causative role in the development of MS.
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Multiple sclerosis patients who regularly smoke pot to relieve pain and spastic muscles could be putting their brain function in peril, say researchers, who found that marijuana can further reduce cognitive abilities often already impaired by the disease.
In a study in this week’s issue of the journal Neurology, researchers found that MS patients who had engaged in long-term pot-smoking were twice as likely as non-weed users to have diminished cognitive abilities overall.
“Prolonged inhaled or ingested (street) cannabis use is shown to significantly worsen one’s attention span, speed of thinking and processing information, working memory, executive functions and visuospatial skills,” said lead investigator Dr. Anthony Feinstein, a neuropsychiatrist at Sunnybrook Health Sciences Centre in Toronto.
“Given that about 40 to 60 per cent of MS patients have problems with cognitive function to begin with, any drug that may add to this burden is cause for concern.”
More about Getting mellow with marijuana may help MS pain, but could hurt brain – Winnipeg Free Press
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Tetsuro Fujita’s eureka moment about a Himalayan fungus came in 1985. As the scientist was driving over a bridge between Japan’s Shikoku and Honshu islands on his way to conduct research on traditional herbal remedies, Fujita was contemplating ways to keep patients’ immune systems from rejecting transplanted organs. He was particularly intrigued by the example of a parasitic fungus used in a Chinese medicinal soup. Known in Asia as “winter insect, summer plant,” the Cordyceps fungus invades an insect larva during winter, feeds on it for months, and then grows out of the host by summer. Fujita suddenly realized that the fungus must be suppressing the immune system of the insect larvae on which it grew to maturity.
His research on Cordyceps at Kyoto University eventually helped Japanese drugmaker Mitsubishi Tanabe Pharma produce Gilenya, a treatment for multiple sclerosis that Novartis #NVS# licensed and began selling in the U.S. in October. UBS #UBS# says annual sales of the medicine, the first pill to treat the autoimmune disease afflicting more than 2 million people worldwide, may exceed $5 billion annually by 2018. That would rank it among the 10 best-selling drugs worldwide, based on data from researcher IMS Health. Mitsubishi Tanabe will likely book royalties equivalent to 10 percent of sales, based on the median of estimates by four analysts surveyed by Bloomberg News.
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“Neurologists believe the interventionalists are overstating the possible value of CCSVI and that commercial interests are overriding scientific inquiry,” according to Dr. Burks, a neurologist and clinical professor of medicine at the University of Nevada, Reno. Patients, armed with anecdotal evidence downloaded from the Internet, are certain that CCSVI surgery is the miracle they’ve been waiting for and perceive the hesitancy of U.S. and Canadian neurologists to embrace the treatment as evidence of a possible conspiracy with pharmaceutical companies who stand to lose billions of dollars if the surgery becomes a first-line treatment, he said. Further, he noted, advocates of CCSVI claim that neurologists who refuse patients’ demands for diagnostic testing and surgical referral for CCSVI are jeopardizing the safety of those patients, who are traveling to foreign countries such as Poland, Bulgaria, Mexico, Costa Rica, and India to get the care that they cannot receive in North America.
Both camps point to the much publicized case of a Canadian MS patient who traveled to Costa Rica for jugular vein angioplasty and died from a ruptured vessel as evidence that supports their respective positions, said Dr. Burks.
To date, the majority of the evidence regarding CCSVI diagnosis and treatment in MS is inconsistent, and can be confusing, Dr. Burks noted.
More about Conflicting CCSVI Data Lead to Call for New Research, United Message : Internal Medicine News
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Watson McGregor has primary progressive MS -the less common variant where the disease progresses rapidly after its first onset. Early research into CCSVI and MS has shown venous angioplasty to be less effective for those with primary progressive MS, but the McGregors still wanted to give the procedure a try.
Watson, 53, had his first venous angioplasties in June in Bulgaria. For six weeks afterward, his symptoms improved dramatically, Alisa said. His energy returned and he could speak clearly: “It was just like somebody snapped their fingers and he was back,” she told The StarPhoenix in August.
His condition declined, however, and they decided to go back to Bulgaria in September, where doctors inserted two stents in his veins in the hope the veins would stay open rather than re-collapsing, which is what they believed had happened.
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Two University of Calgary researchers may have unlocked a vital clue in understanding multiple sclerosis.
Their research, published in the current issue of the Journal of Neuroscience, could be a first step to helping improve the quality of life for the estimated 55,000 to 75,000 Canadians with the condition.
By studying MS symptoms in mice, Dr. V. Wee Yong and Dr. Smriti Agrawal of U of C’s Hotchkiss Brain Institute discovered that a “molecular switch” called Emmprin allows immune cells — which help the body fight off illness and infection — to escape from enlarged blood cells and attack the protective covering wrapped around nerves in the brain or spine of MS patients.
“We find when we inhibit the activity of this new molecule Emmprin, we stop the migration of immune cells into the brain and we also result in reduced injury in the nervous system. At least in an animal model of MS, disease severity is reduced,” said Yong, a professor of clinical neurosciences who helped lead the study.
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Jan 5, 2011 — New research may help explain why multiple sclerosis rates have risen sharply in the U.S. and some other countries among women, while rates appear stable in men.
The study could also broaden understanding of how environmental influences alter genes to cause a wide range of diseases.
The causes of multiple sclerosis (MS) are not well understood, but experts have long suspected that environmental factors trigger the disease in people who are genetically susceptible.
In the newly published study, researchers found that women with MS were more likely than men with MS to have a specific genetic mutation that has been linked to the disease.
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