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.
More on Why You Should Consult Your Doctor, Not Facebook, On Medical Issues
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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.
More about Prevalence, sensitivity, and specificity of chronic cerebrospinal venous insufficiency in MS
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As with any elite athlete, Omphroy, a 21-year-old rookie defender with Toronto FC, has had to overcome challenges to get here. But his have been on a different scale — fears he was going blind at age 17 as he tried to crack the lineup of a professional soccer team in Portugal; enduring what felt like electric shocks through his body and the loss of feeling in one foot last year.
That second episode sent him from chiropractors to doctors to specialists. Their conclusion had an impact that goes well beyond the playing field.
Omphroy has multiple sclerosis, an autoimmune disease that affects the brain and central nervous system and can have debilitating symptoms.
“I was shocked,” Omphroy recalls of the diagnosis, which came from a neurologist in February of last year following an MRI. “I was like: ‘I can’t believe I have a disease that has left people in wheelchairs.’
“Just the thought of that, of me having to be in a wheelchair sometime in my life, is scary. You hear about a friend of a friend who knows somebody who has it, but you never think it’s something that’s going to happen to you.”
Far from ending his dreams of playing professional soccer, Omphroy, a native of California’s San Francisco Bay area, firmly believes his disease has, in many ways, made him better.
His diet has improved dramatically, more greens and fish, no alcohol or caffeine. Each night, he injects Copaxone, a drug used to treat his form of the disease, and ensures that he gets enough sleep to train the next day.
More about TFC’s Demitrius Omphroy not letting multiple sclerosis slow him down – thestar.com
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