*Barre google de traduction indispensable! Je profite des liens ccsvi pour mettre des liens SEP bien utiles aussi, s depuis des semaines!
*de Stuart Schlossman:
is what we do"
concerning Multiple Sclerosis when registered
at the MS Views and News website.
MS sufferer Max Keeping is photographed in his home in Corner Brook Thursday, Sept. 2, 2010.
Max Keeping is infuriated with the passive and negative responses to clinical trials for a new, but controversial, treatment for multiple sclerosis.
The Corner Brook man, who suffers from the disease, said the advancements of this proposed treatment has given him hope of a better quality of life.
Italian Dr. Paolo Zamboni has been boasting success with multiple sclerosis patients by performing an operation to unblock restricted blood flow out of the brain. While, it has created some hope for many suffering from the nerve-wasting disease, it has been met with skepticism and, at least, caution by scientific experts, governments, and health agencies.
The Canadian Institute of Health Research held a news conference Tuesday to make recommendations on multiple sclerosis research priorities. Alain Beaudet said top North American scientists report there is not enough evidence to back the claims of the doctor. The association unanimously recommended not to back clinical trials at this stage.
The Multiple Sclerosis Society of Canada has said it wants to know more about any possible link between blocked veins and the disease before it backs Zamboni’s work.
Various provincial governments have taken different approaches to supporting clinical trials or not. This province’s government has expressed its support. Meanwhile, the federal government is also taking a wait-and-see approach, with respect to clinical trails. Instead, the national government will assemble a working group to study information coming out of studies of the treatment regime now underway.
“I think it is disgusting,” Keeping said. “They have finally come up with something that might help people with multiple sclerosis — I say might, because I haven’t heard any negative reports on it yet from people with MS — and the MS Society in particular is turning thumbs down on it.”
The longtime volunteer, who is vice-chair of the Corner Brook MS Society chapter, said people make an effort to get out in the community to raise funds and awareness for these types of advancements in treatment.
“All of a sudden, the people in charge are ignoring the people with MS completely,” he said.
Keeping said the clinical trials should be permitted to go ahead and those who want to participate should be signed up. Since the provincial governments has said it will support clinical treatments, he has been inquiring into what criteria is required of participants, but has not been receiving much information.
Having lived the last eight years of his life in a wheelchair, the 63-year-old said he would sign up for trials tomorrow if he could. In fact, he said if the treatment was offered in Canada, he would have it done as soon as possible regardless. He said, while the expense of going out of the country is not ideal, it is the extensive travel of going to a place like Poland that is nearly impossible for him.
“The most damage they can do is damage a vein,” he said. “The best they can do is give people like myself some quality of life back again.
“ ... I have heard of people who have had this thing done and they saw improvements in a matter of days. Whether that improvement lasts or not, that remains to be seen. If they don’t do the procedure, they will never know.”
Keeping said the reward far out weighs the risk.
“Maybe it gives a person like me a quality of life for another five or 10 years,” he said. “I don’t see where it will do any damage. If it does any damage, how much worst is it going to make my life.”
Ted Warren announced Wednesday he resigned as chairman of the St. John’s-Mount Pearl chapter of the MS Society. He objected to the national association’s cautionary stand on the new treatment.
Keeping expects more resignations.
“Personally, I think the Multiple Sclerosis Society has made a terrible mistake, and Ted Warren is the first,” he said. “He will not be the last. I would say it is going to come fast too.”
He also criticized the federal government for its stance.
“I think they should have given it more consideration and taken the people with MS into consideration before they made the announcement,” he said. “The people with MS have been looking forward to something like this for years. All the drugs they have is not curing MS. It might prevent relapses, but this one could improve the relapses so you won’t have anymore.”"
Position Statements of the Society of Interventional Radiologists and Canadian Interventional Radiology Association
Twila Lebold got out of bed one day this week and vacuumed her home, top to bottom. Then later that afternoon, she played a game of badminton with her son Joseph. To some, this may seem like the events of an ordinary summer day, but for Lebold, a mother of two who has suffered from multiple sclerosis for the past 20 years, it was an extraordinary feat.
Lebold, who teaches kindergarten at Conestogo Public School, attributes her newfound energy and abilities to a surgical treatment which she received while in India last month. The treatment, which is officially known as “chronic cerebrospinal venous insufficiency” (CCSVI), is based on the theory that the disease could be the result of narrowed veins in the chest and neck blocking the drainage of blood. Inflammation and a malfunctioning immune system have traditionally been pinned as the culprits for the disease, which damages the central nervous system. The treatment method developed by Italian doctor Paolo Zamboni is a relatively low-risk procedure that clears blocked veins in the neck. It has been compared to coronary angioplasty, which opens blocked arteries of heart patients.
“The whole experience was amazing,” Lebold said. “Back in June, my health and my mobility were declining. I wasn’t using a wheelchair but I would hold heavily onto my husband’s arm as we walked. I held heavily onto my sons. After the procedure, my son came to my side and positioned himself so I could hold onto his arm, but I didn’t need his help. I was walking on my own.”
Lebold, along with four other MS patients in Waterloo Region, connected with Lou Dietrich, president of Liberation Gateway, which helps arrange overseas visits for people seeking the treatment. She travelled to India for two weeks in August to be a part of the experimental research.
“Every single one of us had some kind of improvement,” she said. “I am able to walk up and down the stairs, and I can balance better than I could before. One woman had improved speech, another had less back pain. It’s not a cure, and I can’t guarantee that anyone will be able to leave their wheelchair behind or anything like that, but it sure has seemed to help.”
Zamboni’s treatment has been championed as a medical breakthrough by some patients looking for a way to alleviate their symptoms, but this week a group of leading Canadian medical experts has advised the federal government against funding clinical trials for the controversial new therapy.
“I don’t expect to see the procedure available in Canada anytime soon,” said Lebold. “I am not going to fight the government on this issue. I feel like that would be barking up the wrong tree. Our government is trying to do everything properly – making sure they dot all their I’s and cross all their T’s. The procedure is still young and research is still being done to see if it really can work. I am excited to be a part of the process.”
Patients who want the treatment pay out of pocket. Through Liberation Gateway, the cost is $12,500, which covers the treatment as well as accommodations and hospital fees but does not include flights.
“It is expensive, but if you have MS and you can afford the trip I would definitely recommend it. We had such a wonderful time and were treated so well,” she said. “We also saw a culture that was so different from ours, which gave me new perspective. I hope the treatment works for the long term, but if I go back to Canada and have fresh air and clean drinking water, I still know I am fortunate.”
Lebold returned to Canada on Aug. 15 rejuvenated and ready to get back to teaching when her classes resume next week.
“I am so thankful to everyone who supported me. My husband Ray, the people at Bloomingdale Mennonite Church and the wonderful people in India have all helped me get through this. My health was declining and, with help, I feel like I have been able to get on the right track again. I know that this is not a cure, but I have bought myself time and I could not be more grateful for that.”"