Talking about From M.S. Patients, Outcry for Unproved Treatment – NYTimes.com
The new theory has taken off on the Internet, inspiring hope among patients, interest from some researchers and scorn from others. Supporters consider it an outside-the-box idea that could transform the treatment of the disease. Critics call it an outlandish notion that will probably waste time and money, and may harm patients.
These critics warn that multiple sclerosis has unpredictable attacks and remissions that make it devilishly hard to know whether treatments are working — leaving patients vulnerable to purported “cures” that do not work.
The controversy has exposed the deep frustration of many people with this incurable, disabling disease, who feel that research has let them down. It is a case study in the power of the Internet to inform and unite angry patients—which may be a double-edged sword. Pressure from activists helped persuade the Multiple Sclerosis Society to pay for studies of Dr. Zamboni’s theory, but the Internet buzz has also created an avid market for a therapy that is still unproved.
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Talking about Proceed with caution on new MS treatment: Canada’s top medical journal – The Globe and Mail
“There are a lot of people out there that have illnesses that are difficult to treat, impossible to cure,” Paul Hébert, editor-in-chief of the journal and co-author of the editorial, said in an interview. “The difficulty we now have is picking priorities.”
Bowing to pressure to allow widespread public access to the procedure before it’s been proven safe and effective in rigorous scientific trials could endanger patients and also create an expectation for a similar response each time a promising new treatment or procedure emerges, the editorial says.
At the same time, it’s unfair to completely block all patients from receiving the treatment they want, it says.
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Talking about Test could detect MS nine years in advance – Telegraph
But now a team of Israeli doctors and scientists have found “chemical markers” on blood that will lead to a test for the disease.
Professor Anat Achiron, of Tel Aviv University’s Faculty of Medicine, has uncovered a way of detecting MS years before the illness hits sufferers.
“We are not yet able to treat people with MS to prevent the onset of the disease but knowledge is power,” said Professor Achiron.
“Every time we meet a new patient exhibiting symptoms of MS, we must ask ourselves how long this has been going on.
“We can diagnose MS by brain MRI scans, but we’ve never been able to know how ‘fresh’ the disease is.”
Her findings are published in the journal Neurobiology of Disease.
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Talking about Mental Activity May Protect Brain in Multiple Sclerosis – Those with intellectually enriched lives show less cognitive decline even with brain atrophy – ModernMedicine
Higher levels of intellectual enrichment may negate the negative impact of brain atrophy in people with multiple sclerosis (MS), according to research published in the June 15 issue of Neurology.
To determine the impact of intellectual enrichment on brain atrophy in people with MS, James F. Sumowski, Ph.D., of the Kessler Foundation Research Center in West Orange, N.J., and colleagues examined neuropsychological measures of learning and memory, and the lifetime accumulation of word knowledge in 44 MS patients.
The researchers found good scores on learning and memory tests among patients with mentally active lifestyles whether they had lower or higher amounts of brain atrophy. Among those whose lifestyles were less intellectually stimulating, the researchers found a greater association with slower rates of learning and lower recall in those with higher levels of brain atrophy than in those with less brain damage.
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The Associated Press: FDA weighs benefits, risks of Novartis MS pill
Swiss drugmaker Novartis has asked the Food and Drug Administration to approve its drug Gilenia to treat patients with relapsed multiple sclerosis, which causes tremors and movement problems. The drug is a daily pill and would offer an alternative to older injectable drugs.
FDA reviewers said two studies of the drug “provide substantial evidence for an effect.”
However, FDA staff also noted a number of side effects with the drug, including eye disorders, heart problems and weakened lung function.
Serious side effects occurred in at least 8.5 percent of patients taking Novartis’ drug, compared with 5.8 percent of patients taking older multiple sclerosis drugs.
FDA reviewers complained that there was little data on the long-term effects of using Gilenia.
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Talking about UK scheme for MS drugs a costly failure -experts | Reuters
“The scheme was a success for the drug companies, who sold at close to full price to the NHS,” said James Raftery, a professor of health technology assessment at Southampton University. “For the NHS, however, the scheme can be judged only a costly failure.”
Raftery said an assessment of the scheme in 2009 by its scientific advisory group, which included the drug firms, found that patients fared worse on the drugs than had been expected, suggesting the medicines were not cost effective. Yet the panel decided to continue with the project.
The risk sharing scheme was set up by the government in 2002 to make disease-modifying multiple sclerosis drugs available on the NHS after the country’s health costs watchdog, the National Institute of Health and Clinical Excellence (NICE), ruled that they were not cost effective.
Under the terms of the scheme, the government agreed to pay for the drugs on the NHS while research was carried out to assess their long-term cost effectiveness. The agreement was that the NHS would then gradually stop paying for the drugs if patients did not appear to be benefiting.
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Talking about Yoga a good activity for MS patients – chicagotribune.com
Yoga guru Baron Baptiste says that when he was approached about developing a yoga program for multiple sclerosis patients, he grabbed the opportunity.
“It was kind of exciting to me to take my skills of teaching yoga and making the benefits of yoga available to people with MS, sculpting it to fit people in their condition,” Baptiste said during a demonstration of the program, called MyMS Yoga.
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Talking about CTV British Columbia – MS patients claim discrimination in treatment access – CTV News
Friends Rick Pereira and Martin Dimitov both suffer from MS. Every day, Pereira visits a Burnaby care home to help Dimitov.
Though both were diagnosed at the same time, Dimitov’s symptoms are so advanced, his vision is eroding daily. The former semi-professional soccer player can’t sort out his vitamins without assistance.
Many MS patients believe that a simple vascular procedure can ease and even eradicate the debilitating effects of MS.
Dimitov and Pereira both say that the so-called “liberation” or “zamboni” treatment is like pulling a drowning person out of the ocean.
“Because it treats the cause, it would definitely help. All the evidence is showing that everybody who has had this done has been helped in one way or another,” Pereira told CTV News.
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Talking about MS sufferers more likely to lose jobs – ABC News (Australian Broadcasting Corporation)
New research shows people with multiple sclerosis are more likely to lose their job than people with other chronic illnesses.
Multiple Sclerosis (MS) Awareness Week is focussing on the employment prospects of people who are diagnosed with MS.
MS Tasmania says a national study between 2003 and 2007, and published in the Journal of Neurology, shows 56 per cent of people with the condition had lost their jobs, while 64 per cent were no longer in the paid workforce.
MS Tasmania’s Heather Francis has urged employers to consider flexibility and understanding when it comes to possibly letting staff go, who are diagnosed with MS.
“Tasmania has by far the strongest prevalence of MS than any other Australian state,” she said.
Ms Francis says ‘switched on’ employers are making simple workplace changes, especially in times of skills shortages, to keep their good staff.
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