IVCC/CCSVI, liens et articles de ce jeudi.
Barre de traduction google indispensable!
Je commencerais par un article qui veut attaquer la ccsvi, vous savez que je ne censure rien, publié hier par l'assoce US SEP qui ne consacre que très peu de ses dons à la recherche et qui existe grâve aux labos!!!
MULTIPLE SCLEROSIS
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.
As for the testimonials from patients who reported dramatic improvements after the procedure, Spence said many people, including some doctors, don’t understand the placebo effect.
“It is very real, very powerful.”
Spence cited a study of the placebo effect at the University of Western Ontario in which medical students were given dummy pills and told they were being given a heart medication. Tests on the students recorded some had nausea, vomiting and high blood pressure. Some fainted, and some had low blood pressure.
“They recorded definite physical abnormalities from taking this placebo tablet because they had expectations it would have some affect on their cardiovascular system,” Spence said.
“You cannot study a new therapy without assigning a certain proportion of participants in a study to a control, a proper double-blinded control where the patient doesn’t know what treatment he or she is receiving and the person evaluating the response doesn’t know what treatment the patient is receiving,” Spence said.
Such a study should only take about a year, he said."
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| ILFRACOMBE MS sufferer Jayne Morrow and husband Dave are hoping a pioneering new treatment will help ease her condition. |
Jayne Morrow, 42, says it is unfair she will have to spend £5,500 and possibly travel overseas for the treatment she believes could ease her condition.
And there would be many others who could not raise the money, she said.
"The health service in this country will not recognise it," said Jayne, who until she was diagnosed three years ago, was a successful fitness instructor and personal trainer in North Devon.
"People with this debilitating illness should not have to wait years for the wheels of medical bureaucracy to turn, by which time they could be unable to move or speak."
The disease causes extreme fatigue, numbness, loss of muscle coordination, plus problems with vision and speech.
Jayne says sufferers should have the right to choose a new "liberation treatment" pioneered by Italian doctor Paolo Zamboni, who last year announced MS was caused by blockages to veins which connect to the brain, resulting in damage and not a problem with the immune system as previously thought.
Using a straightforward angioplasty procedure to open up veins he claimed to have stopped the symptoms of his wife's MS and had similar success with dozens of patients.
The internet is now abuzz with success stories, but if anyone wants the treatment they have to travel abroad to Eastern Europe or Asia and Jayne believes the NHS should be doing more to make it available here.
She is booked for a CCSVI scan at a clinic in Glasgow in September. If it proves positive the operation will cost a further £5,000, but she does not know where that might be carried out.
"Blocked veins are a recognised condition here in the UK, but as soon as you mention MS everyone runs," she said.
"I agree trials should take place, but expecting us to wait 10 years for the results is wrong. We have a progressive illness and they should treat us and trial us at the same time. In fact, it is against our human rights not to."
She has also begun taking a new drug for MS known as LDN, which she pays for herself and has given up the NHS treatment of expensive beta interferon drugs, which she says costs the NHS £50 million a year.
Both Jayne and her husband Dave say they are disappointed at the lack of information the NHS has given them on options that might be available.
"Because Jayne's MS has been quite stable I think they felt she was getting the best treatment she could and we just had to get on with it," said Dave.
"Because of her fatigue it was a struggle for us just to go out down to the park with our youngest and that would make her very upset."
The condition described by Dr Zamboni is known as "chronic cerebro-spinal venous insufficiency" (CCSVI.) Some preliminary studies are being prepared in Canada and the US but it is unknown when or if the procedure will be available here.
Jayne concluded: "I speak for those people who can't talk, walk and are bed ridden. I am disgusted and very hurt from the attitudes we've had from the people that should be helping us."
A spokesman for NHS Devon said in regard to the LDN drug: "It is too early at the moment and more research needs to be done around it before NHS Devon looks at commissioning the drug."
An MS Society spokeswoman said of the new treatments: "The MS Society shares people's enthusiasm for what could be a positive breakthrough in MS treatment and we want the best outcome for people with MS. At the moment, there is not enough evidence to show that either CCSVI or LDN treatment is effective and as such more research is needed and welcomed."
Saskatchewan Premier Brad Wall says the province is ready to help pay for clinical trials of the so-called liberation treatment for multiple sclerosis sufferers. (Jeff McIntosh/Canadian Press) Saskatchewan is ready to help pay for clinical trials of the so-called liberation treatment for multiple sclerosis sufferers, despite a lack of scientific evidence that it might work, says Premier Brad Wall.
"There isn't unanimity on the issue, I understand that," Wall said Tuesday. "But we also know anecdotally and otherwise, frankly, of reasons for some optimism and some hope about the liberation treatment, so maybe it is time for clinical trials and … the Province of Saskatchewan is willing to play a funding role."
The treatment is based on an unproven theory — put forward by Italian doctor Paolo Zamboni — that blocked veins in the neck or spinal cord are to blame for MS. Clinics in Poland, Bulgaria and India are opening blockages for patients who have flocked from Canada and other countries in the last few months.
Some patients have posted testimonials on websites, in chat rooms and in YouTube videos, saying the procedure has reduced their symptoms. That has created political pressure to have the treatment provided in Canada.
Saskatchewan has the highest rate of multiple sclerosis among provinces, with an estimated 3,500 residents affected by it.
"There isn't anybody who doesn't have a family member or friend who is battling it," Wall said.
Many medical experts are urging caution. Dr. Paul Hébert, a critical-care physician and editor-in-chief of the Canadian Medical Association Journal, has said that manipulating veins can be dangerous and there is no established link between venous blockages and MS.
"To date, the published evidence is limited to a case series of 65 patients," Hébert wrote in a recent edition of the journal.
He and others believe important questions must be answered before clinical trials on humans can begin:
- Do people with MS really have higher rates of venous blockages?
- Are those blockages a cause of or a result of the disease?
- Can veins be dilated or opened safely?
For Wall, clinical trials are the way to go. His government is inviting proposals from the scientific community and expects to get them shortly.
"We want to be a leader in at least exploring every possible source of hope for those who are battling MS."
*Ontario won't yet fund studies on new MS treatment
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