Aug
22
MS Patient, Singer Gives to Others – WSJ.com
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In true country-music fashion, Clay Walker can boil his life down to a simple refrain: “I don’t have to think about tomorrow, I don’t need anything money can buy, I don’t have to beg, steal, or borrow, I just want to live until I die.”
The sentiment from his 1994 hit single, “Live Until I Die,” still holds true for the singer, who was diagnosed with multiple sclerosis more than a decade ago.
What he initially viewed as a death sentence turned into a second career with the 2003 launch of Band Against MS, a nonprofit to support research and help people with multiple sclerosis.
Now, through the foundation, he’s making a $50,000 donation to fund pediatric multiple sclerosis research at Stony Brook University Medical Center in Stony Brook, N.Y., bringing his total giving for research of this kind to more than $2 million.
“Stony Brook is taking the fresh ideas of doctors who aren’t just running down the same trails,” Mr. Walker says. “There’s no better way to start looking for a cure than by working with children.”
About 400,000 people in the United States have the chronic, neurological disease and 200 others are diagnosed each week, according to the National Multiple Sclerosis Society.
Until this decade, multiple sclerosis had been seen as an adult disease, says Lauren Krupp, director of the national Pediatric MS Center at Stony Brook University, whose research Mr. Walker’s donation will fund.
The center itself was founded in 2006 to work specifically with clinical care and scientific research of children and adolescents with multiple sclerosis.
Ironically, Dr. Krupp says it makes more sense to study the disease in children, rather than adults, because children haven’t had as much exposure to the environmental toxins that many doctors think contribute to the cause of the disease.
Read the rest via MS Patient, Singer Gives to Others – WSJ.com.
Aug
7
A novel theory about the cause of multiple sclerosis — one that quickly led to millions of dollars in research pledges and an increasingly popular, though unproved, treatment — took a hit Monday from two studies calling the premise into question.
The theory, proposed last year, had gained traction in a field desperate for research advances. It suggests that multiple sclerosis can be traced to obstruction in the veins carrying blood from the brain back to the heart — leading to nervous system damage and causing the hallmark symptoms of muscle weakness, decreased coordination and vision problems.
Despite the fact that multiple sclerosis has long been acknowledged as an immune system disorder, patients immediately leaped for MS endovascular surgery to open blocked or narrowed veins in the neck. The National MS Society has reported that one patient undergoing such treatment died.
Now research published online in the Annals of Neurology undermines the theory — called chronic cerebrospinal venous insufficiency by its creator, Italian researcher Paolo Zamboni.
In one study, conducted by German scientists, ultrasound imaging tests of the veins around the brains and nervous systems of 56 multiple sclerosis patients found that blood flow was normal in all but one person. A control group of 20 healthy patients had similar blood flow.
The second study, conducted in Sweden, used a different type of imaging test to compare blood flow in MS patients and a group of healthy people; both had similar amounts of blood vessel blockage.
“These are important, cautionary papers,” said Dr. Stephen L. Hauser, chairman of the department of neurology at UC San Francisco, who was not involved in the research. “It should help us all to step back and wait for additional word before any patient with MS moves forward.”
read the rest via Multiple sclerosis theory dealt a blow by studies – Los Angeles Times
Jul
27
Doc calls costly therapy ‘robbery’
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Clinics charging multiple sclerosis patients thousands of dollars for an unproven treatment are basically stealing, an internationally recognized stroke researcher and Robarts Research Institute scientist said Monday.
“That is robbery. . . . It is quackery because nobody knows yet if it works,” said Dr. David Spence, director of the Stroke Prevention and Atherosclerosis Research Centre in London.
News reports that Italian doctor Paolo Zamboni last year discovered a treatment for MS that involved unblocking veins have sparked intense interest from people with the disease.
Proponents say the procedure can reduce, and even eliminate, the damage from MS.
Clinics offering the controversial angioplasty procedure have sprung up in Mexico, India, Kuwait, Bulgaria and other countries.
In Canada, the procedure hasn’t been approved and patients have to pay the bills themselves, some as high as $20,000, if they opt for foreign treatment.
Several MS patients from London have said they will have the procedure after seeing media reports and watching YouTube videos showing patients getting out of wheelchairs and walking up stairs.
“It is a procedure that should only be done experimentally for now because it is based on an unproven theory,” Spence said.
“For sure we would all love it to be true, it would be great to have a new treatment for multiple sclerosis, but there are a whole bunch of problems.”
One of the problems with the theory that multiple sclerosis is connected to blocked veins is that narrowed veins in the brain can cause strokes. But the part of the brain affected by strokes is not the same part affected by MS, Spence said.
In addition, many MS lesions are found in the spinal cord, not in the brain, so the narrowing of veins in the brain is not going to cause those lesions, he said.
“The theory is implausible because it doesn’t bear any relationship to what we already know about these things,” he said. “Everything we know about MS so far indicates it is an inflammatory condition.”
Spence likened the current rush of patients to seek the foreign treatment with laetrile, an extract from almonds that was touted as a cancer cure but was later discredited.
Read the rest via Doc calls costly therapy ‘robbery’ | London | News | London Free Press
Jun
9
Stem Cell Tourists Denied: Costa Rica Stops Treatments at Top Clinic
Filed Under News, Research | 3 Comments
Last month, Costa Rica’s health ministry halted treatments at the country’s largest stem cell clinic, arguing that the treatments are unproven and possibly unsafe.
Though the Obama administration has expanded federal funding of stem cell research and there are ongoing clinical trials, there are currently no FDA-approved stem cell treatments. So some Americans, suffering from conditions ranging from cancer to spinal injuries, have looked elsewhere for experimental stem cell-based remedies, and clinics in countries such as Costa Rica, China, India, and Mexico have grown into stem cell tourist destinations.
Costa Rica’s largest clinic, the Institute of Cellular Medicine in San Jose, was operated by American entrepreneur Neil Riordan; it attracted about 400 patients for these treatments. The clinic used adult stem cells, which Costa Rica’s government had allowed the clinic to take from patients’ fat and bone marrow. The government had not authorized the clinic to use these cells for treatment.
“If stem cell treatment’s efficiency and safety has not been proven, we don’t believe it should be used,” said Dr. Ileana Herrera, chief of the ministry’s research council. “As a health ministry, we must always protect the human being.” [Reuters]
Researchers argue that such clinics neither provide reliable treatment nor advance research since they use anecdotal evidence for a treatment’s efficacy and don’t safeguard against other variables in their testing. Given the dire conditions of many patients seeking these clinics, many worry that desperate patients make easy targets.
Read the rest via Stem Cell Tourists Denied: Costa Rica Stops Treatments at Top Clinic | 80beats | Discover Magazine.