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 Inviato: Mar Feb 09, 2010 Oggetto: |
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MS study up for discussion in Calgary
There has been a lot of excitement about a potential breakthrough
in the study of multiple sclerosis, and on Saturday,
Calgarians got the opportunity to weigh in.
The findings, made by an Italian researcher,
suggest the disease is linked to the flow of toxic blood.
But the research is controversial.
On Saturday,
hundreds of Calgarians turned out to an information session at a Calgary hotel looking for more information.
Among them were Michele and Steve Zanini who say they're very hopeful about groundbreaking research underway in Italy.
"Michelle's had MS for a number of years,
and this has been the most interesting piece of information to come out," said Steve Zanini.
The Zaninis, and other families dealing with MS,
have been closely watching the work of Dr. Paolo Zamboni.
His findings suggest the debilitating disease is linked to blocked arteries that prevent toxic blood from draining out of the brain.
His team began using tiny balloons to widen the veins,
and some patients say their MS attacks have disappeared.
The news has spread like wildfire,
especially on social networking sites.
And that excitement attracted many to the Calgary meeting hosted by the U of C.
CTV News was not allowed into the meeting,
but many who were inside tell us they, and the meeting's organizers,
believe more research is needed.
But most people CTV spoke with feel they should be offered access to the treatment in Canada right now.
"Basically we're all being treated like a bunch of idiots,
" commented Deborah Thorarinson.
"I realize that they don't want people just jumping into new things,
but there is a lot of research, there are a lot of people that have had this done already."
"I would go to see Dr. Zamboni in Italy in a heartbeat,"
added Joyce Martin.
Doctors in Vancouver are among those embarking on an international study.
They hope to do procedures on 100 people in B.C. and Saskatchewan.
But the Zaninis aren't waiting.
They're planning a flight to India where the procedure is already being offered.
They acknowledge the risk involved,
but say they don't have time to wait for the procedure to be approved in Canada.
"And we are going to step forward and do that, so does that put us on the front edge?
Yep, and somebody has to be there.
So we're not waiting for it any longer," said Steve Zanini.
The MS Society of Canada says the Italian study,
which is known as CCVSI Research,
are of great interest,
but they need to be replicated and validated in much larger studies before they will accept the findings.
Sat Feb. 06 2010 17:05:49
ctvcalgary.ca
http://calgary.ctv.ca/servlet/an/local/CTV...algaryHome |
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| Inviato: Mar Feb 09, 2010 Oggetto: |
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Test of MS theory 'watershed moment' for St. Joe's
Finding a treatment for multiple sclerosis holds as much promise for Hamilton as it does for patients.
St. Joseph's Hospital is one of just two places in Canada testing Italian vascular surgeon Dr. Paolo Zamboni's controversial theory that MS is a vascular disease -- a radical departure from long-held beliefs that it's an autoimmune condition.
The University of British Columbia is the other place.
It has brought Hamilton to the attention of the world
with about 22,000 MS patients from Asia to Africa to South America
to all over the United States and Canada vying to be one of the 100 chosen for the study.
It will also recruit 100 healthy people to take part.
"This is a watershed moment,"
said Dr. Ian Rodger,
vice-president of research at St. Joseph's Healthcare.
"Opportunities like this don't come along very often."
Hamilton has the chance because of McMaster's affiliation with Detroit imaging expert Dr. Mark Haacke, who met Zamboni in September when the Italian doctor held a conference about his theory.
Zamboni believes the veins draining blood from the brain are blocked and leaking in MS patients.
This allows iron to leak into brain tissue and he thinks the buildup causes many symptoms of MS.
Zamboni found those veins blocked or malformed in more than 90 per cent of MS patients he studied -- including his wife.
Haacke has long researched the role iron plays in MS and is eager to test Zamboni's theory. His main lab is in Detroit but he's also an adjunct professor at McMaster. With eight other Hamilton doctors, he plans to use St. Joseph's MRI,
which is twice as strong as traditional machines,
to look at the veins in the brains of MS patients and healthy people to see whether there is a difference.
Haacke says there has been a lot of resistance to Zamboni's theory -- cerebral spinal venous insufficiency (CCSVI) -- from medical professionals, particularly neurologists.
"It was just so flabbergasting to them," he said.
But the idea can't be ignored.
"We're going to have 10 years of fascinating research."
St. Joseph's,
McMaster and Hamilton Health Sciences want to play a big role in that. They don't have funding yet, but are together putting in a proposal to the MS Society of Canada Tuesday for $100,000 a year for two years.
Rodger is leading the research and hoping other funders will come forward so that they can do a much bigger study that would produce results in 12 to 15 months instead of two years or longer. Philanthropists and/or their advisors are expected to be at the workshop Zamboni and Haacke are presenting in Hamilton tomorrow.
The stakes are high for MS patients, as there are few treatment options. Zamboni performs an experimental surgery similar to angioplasty to unclog the veins and improve blood flow. He says it has worked for his wife and others.
Hamilton MS patient Vasilios "Bill" Smyrnios wants to know if that surgery could help him. The 50-year-old who was diagnosed 10 years ago can't walk anymore and has to live in supportive housing.
"This disease is relentless," he said. "It keeps getting worse. It has amazed me. I never expected to get like this."
He has newfound hope since researching Zamboni's theory.
"It was the first thing I've read in a long time that made sense."
While St. Joseph's is studying the theory and hosting the conference, it is a long way from endorsing it.
"There's a great deal of skepticism about the observational study
(that Zamboni did),"
said Kevin Smith, CEO of St. Joseph's Healthcare.
"A lot of the scientific community has already rejected the view.
But it resonates profoundly with patients and families so it's our responsibility to determine if this is more than unusual observation."
Joanna Frketich
The Hamilton Spectator
February 06, 2010
jfrketich@thespec.com
http://www.thespec.com/News/Local/article/717814 |
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| Inviato: Mar Feb 09, 2010 Oggetto: |
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Italian doctor heightens interest in MS cause
The Italian doctor whose unconventional thinking on the cause
of multiple sclerosis is in North America to drum up interest in testing the idea.
Most MS specialists believe the condition is an autoimmune disease
caused by immune cells attacking neurons in the brain and spinal cord,
leading to inflammation and damage such as paralysis.
But Prof. Paolo Zamboni's idea is that a narrowing of veins in the neck interferes
with blood draining from the brain,
allowing iron from the blood to build up in the brain and cause a condition
known as chronic cerebrospinal venous insufficiency (CCSVI).
Asked about skepticism in the medical community,
Zamboni,
a professor of medicine at the University of Ferrara,
told reporters in Hamilton Monday:
"My suggestion is to investigate patients as soon as we can,
not to simply criticize.
Look and confirm the data."
Zamboni was in Hamilton for two days of meetings.
On Sunday, researchers from Jordan, Poland and Buffalo presented their preliminiary findings, which were not released publicly,
on using magnetic resonance imaging to look for vein blockages.
Zamboni believes CCSVI is one of the causative factors in MS,
not the only cause.
Researchers don't know if CCSVI happens just in MS patients,
he noted.
To find out more,
a team at St. Joseph's Healthcare in Hamilton,
Ont., hopes to recruit 200 people for a controlled study — 100 with MS and another 100 healthy people.
Investigators will also focus on different types of MS,
searching for any differences that patients may have in their blocked veins.
There is a debate within the medical community in Canada about whether there is enough evidence to try using surgery to open up the blockages in patients with MS.
"What the techniques would be have got to be defined yet, so this is early days to understand the association of this very interesting observation of Dr. Zamboni,"
said Dr. David Higgins, president of St. Joseph's Healthcare.
Tuesday is the deadline for researchers who want to apply for funding from the Multiple Sclerosis Society of Canada.
The society will make $100,000 available for each of two years,
and will decide which proposals to fund in a few months.
The other known applicant is the University of British Columbia.
http://www.cbc.ca/health/story/2010/02/08/...mboni.html
Monday, February 8, 2010 | 6:31
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| Inviato: Mar Feb 09, 2010 Oggetto: |
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New theory suggests MS treatable
Mac prof warns it's not a panacea
A controversial theory touting multiple sclerosis as a vascular disease
is a "step in the right direction" but not a panacea,
says a McMaster University professor.
Dr. Mark Haacke,
director of the imaging division in the school of biomedical engineering at Mac,
says it would not be a good idea for people to call the theory
by Dr. Paolo Zamboni a cure for the disease.
"I think the key here is that these people who've had the disease,
it may take a long time for the problems in the brain to clear up,"
said Haacke,
who is also a professor at Wayne State University.
"They may still require the conventional treatments that they're getting now."
Zamboni has proposed that multiple sclerosis (MS) is a vascular disease that can be treated, rather than an auto-immune disorder with few treatment options.
His theory is called chronic cerebrospinal venous insufficiency.
He was in Hamilton yesterday for a scientific workshop at St. Joseph's Healthcare's Charlton Avenue site.
About 200 people,
a mix of professionals, doctors, scientists, and people who suffer from MS attended.
The workshop was a closed event.
"I think it went very well," said Kevin Smith, CEO of St. Joseph's Healthcare.
"Obviously this was an opportunity for the scientific community to come together
and chat with Professor Zamboni about his observations and others who've been involved in replicating his observations."
In addition to Zamboni,
those in attendance say information from others doing similar work around the globe was presented.
Dr. Ian Rodger,
vice-president of research at St. Joe's, said the workshop heard "undeniably"
that there are patients who have had the medical procedure that is done based on his theory (it unclogs veins to the brain and improves blood flow)
who quickly had relief from some MS symptoms such as fatigue and buzzing in their ears.
"What we don't know is how long does it last? ...
No one's been following it long enough.
But I think at the end of it all,
(it's) highly encouraging that the data is steadily coming out."
Rodger also said Zamboni has not presented something "mind-shattering"
as talk about problems with blood vessels in the brain leading to MS was around 100 years ago.
Smith said the MS Society of Canada has now put out a call for proposals to research the subject further.
St. Joe's and McMaster will be involved in bidding for the chance to conduct the study,
he said.
St. Joe's has currently done some imaging work around the theory and was swamped with 22,000 request from MS patients wanting to take part.
A media conference will be held this morning to talk about what was presented at the workshop.
Dana Brown
The Hamilton Spectator
February 08, 2010
dbrown@thespec.com
http://www.thespec.com/News/Local/article/717943 |
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| Inviato: Mar Feb 09, 2010 Oggetto: |
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We’d swamp MRI capacity,’ MUMC clinic director says
MS pioneer urges patients to seek scans, vascular treatment
The Italian doctor
pioneering a radical and unproven theory that multiple sclerosis
is a vascular disease says patients should seek MRI scans and treatment.
Dr. Paolo Zamboni urged doctors to be more open to his theory
during a media conference at St. Joseph's Hospital today
- his first North American appearance since chronic cerebrospinal venous insufficiency
started gaining worldwide attention in the fall.
“If I should be a neurologist and read similar reports ...
the first thing I should do is to investigate the neck veins of my patients,”
said Zamboni.
“My suggestion is to investigate patients as soon as we can,
not to simply criticize.”
He said the test to find out if the veins draining blood from the brain are blocked
— and the procedure to open them up to improve blood flow —
are already known to be safe and effective and should be available to MS patients.
“We think treatment of CCSVI can be done,”
he said.
“CCSVI is a vascular disease, probably congenital,
with guidelines in diagnosis and treatment."
However,
the ministry of health said today it won’t fund the MRI scans or the treatment
because it considers Zamboni’s theory to be “experimental.”
Local doctors say it would overwhelm the health care system.
“We’d swamp MRI capacity,”
said Dr. John Paulseth, director of the MS clinic at McMaster University Medical Centre.
He said there isn’t enough proof yet to use up that many health resources to do the scans and surgery.
“I think his hypothesis is very worthy of further study,”
said Paulseth.
“But it needs to be corroborated.”
St. Joseph’s is one of two places in Canada
- the other is the University of British Columbia -
testing Zamboni’s controversial theory.
February 08, 2010
Joanna Frketich
Hamilton Spectator
http://www.thespec.com/News/BreakingNews/article/718258 |
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| Inviato: Mar Feb 09, 2010 Oggetto: |
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Centre to test for controversial condition linked to MS
One of the first clinics in North America devoted to testing for a vascular condition that some experts believe is linked to multiple sclerosis is set to open later this month in Buffalo,
just as scientists are to release more findings on the controversial theory.
The Buffalo Neuroimaging Analysis Center (BNAC) has announced that it will begin to offer testing for the newly discovered condition,
called chronic cerebro-spinal venous insufficiency (CCSVI),
in mid-February due to overwhelming demand from MS patients.
Italian scientist Dr. Paolo Zamboni
believes that CCSVI causes veins in the neck and upper chest to twist,
narrow or become blocked;
in some cases, these veins never form at all.
The result is poor blood drainage from the brain.
Zamboni has found that more than 90 per cent of patients
with MS have these malformed veins,
and improper blood flow from the brain.
Due to the overwhelming response to Zamboni's research and to its own study
on the condition,
the BNAC said it will begin offering diagnostic venous testing
to patients beginning in mid-February 2010.
Testing will include:
- An MRI of the brain to measure the level of iron deposits
- An MRI of the neck to study the jugular, vertebral and other collateral veins
- A Doppler exam of the head and neck to determine blood flow
- A follow-up visit with a doctor to discuss the findings
News of the findings comes days before scientists from the BNAC release data from their study that includes 500 MS patients who were tested for CCSVI.
"What I can tell you today is that the preliminary results are exciting scientifically and will generate a great deal of discussion among our colleagues,
the worldwide press, and individuals like you who are following very closely any developments about CCSVI," Dr. Robert Zivadinov said in the BNAC newsletter.
Zivadinov said the second phase of the study will include another 500 patients and will
"pose new and provocative questions about the CCSVI theory."
Scientist welcomes scepticism
Zamboni told CTV's Canada AM Monday that he welcomes skepticism about his findings.
"This is normal when there is a new finding in science,
" Zamboni said. "I think that this is positive because it stimulates debate."
Zamboni was in Hamilton, Ont., Sunday for a scientific workshop looking into the relationship between MS and CCSVI.
Scientists from the United States,
Europe and the Middle East reported that they had found CCSVI in more than 95 per cent of MS patients.
"The meeting yesterday was quite successful because we met a lot of colleagues from all over the world that are actually working on our theory,"
said Zamboni,
who is a professor of medicine at the University of Ferrara in Italy.
According to Zamboni, a surgical procedure to restore proper blood flow,
which he dubbed the "Liberation treatment," can reduce MS symptoms.
In a study of 65 patients who underwent the procedure,
released in the Journal of Vascular Surgery,
Zamboni says that 50 per cent of patients with the most common form of MS were relapse-free for at least 18 months.
In a control group of MS patients who did not undergo the procedure,
only 27 per cent went 18 months without an MS attack.
Additionally,
only 12 per cent of patients in the surgery group had brain lesions -- a sign of active disease -- compared to 50 per cent in the control group.
Research will take time
Dr. Mark Haacke,
director of the imaging division in the school of biomedical engineering at McMaster University, organized the weekend conference and said "no one is claiming it's a cure."
"It's a cardiovascular problem first,
it may be related to MS, it may cause MS -- but we don't know all those answers yet,"
he told CTV.ca.
"That's going to take time to do very careful research to evaluate those MS patients
that do get the operation.
"Do they get better? Do they stay the same? Do their lesions go away? Or do they at least not get worse. (It) may take years and years to really determine the effectiveness of this surgery."
MS societies around the world have responded with funding for research into CCSVI.
The Italian Multiple Sclerosis Foundation has allocated up to $4.5 million for research
and the MS Society of Canada has called for applications for grants for those studying
Zamboni's findings.
Charity Intelligence Canada,
a group that provides donors with research and information,
called for additional research and funding into Zamboni's findings on Monday.
The group said Canadians donated $62 million to MS-related charities in 2009,
and said "supporting CCSVI research presents an opportunity for donors to have high impact in their giving."
"Donors wanting to support CCSVI research in Canada should donate directly to St. Joseph's Healthcare and McMaster University in Hamilton,
Ontario and University of British Columbia,
designating their donations to CCSVI research,"
the group said in a statement.
However,
experts have warned that the findings are far from being validated and those with MS should continue with their current treatment.
"Although the early data are of great interest,
it is important to acknowledge that the concept of CCSVI as a cause of MS and the use
of stents or balloons to widen veins as treatments,
are ideas that are far from being accepted by most researchers in the field,"
the MS Society of Canada says on its website.
Experts have expressed concern that the initial excitement
over the new procedure was leading some to drop their current treatment.
"To people with MS we say: don't abandon the course of treatment that you have started,"
Yves Savoie, the president and CEO of the MS Society of Canada told CTV News in November.
"Those treatments have been proven in large trials to be effective in reducing the burden of disability that comes with MS."
Haacke says that since most MS patients have MR scans performed, clinicians should consider performing additional scans for CCSVI.
"It's important for clinicians to begin to realize that they should be taking some time clinically – not on the research side – to scan their patients and find out if this is a problem," he said.
Canada has one of the highest rates of MS in the world, affecting between 44,000 to 78,000 in the country.
CTV.ca News Staff
Mon. Feb. 8 2010 9:39 PM
http://www.ctv.ca/servlet/ArticleNews/stor...8/20100208 |
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| Inviato: Mar Feb 09, 2010 Oggetto: |
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Test theory, but treat MS patients, doctor says
The Italian doctor behind a controversial new theory of multiple sclerosis
said yesterday he welcomes more rigorous scientific investigation of his ideas,
but suggested there is no reason MS patients should not immediately undergo
the testing and treatment he pioneered.
Arriving in Canada for the first time
since his research sparked a sensation among MS patients,
Dr. Paolo Zamboni,
along with supportive Canadian experts,
painted an enthusiastic picture of his findings.
The vascular surgeon believes MS is partly a result of poor blood drainage from the brain,
as opposed to the long-held theory that the degenerative,
often crippling condition is an autoimmune disorder.
Dr. Zamboni maintains that MS patients can be treated by using an angioplasty
-- the inflation of a tiny balloon --
to open up narrowed veins from the head,
which he says are causing a backup of blood onto the brain.
That "reflux" of blood causes the inflammation that damages the myelin coating around nerve cells and brings on the disease,
he says.
One Ontario scientist at a joint news conference with the Italian doctor said yesterday
that not letting MS patients potentially benefit from the new ideas would be akin to refusing to give sick people penicillin when it first became available in the 1940s.
"Not to give penicillin to somebody would not be a good idea once you know you've got a drug that works,"
said Mark Haacke, a medical physicist and MRI expert at McMaster University.
"Even if one in 10 of your MS patients had [vein narrowings]
that clearly were a danger to that person ...
what are you going to say to that population? Are you not going to image them?"
Critics, however,
say the evidence around the Zamboni theories is far too preliminary to draw any firm conclusions,
and worry that all the positive talk is raising patients' hopes prematurely.
Dr. Zamboni and colleagues should certainly not be recommending at this point that patients undergo the diagnosis or treatment outside of a clinical trial,
said Dr. Mark Freedman, a neurologist at the Ottawa Hospital.
" That is completely irresponsible," he said in an interview.
Dr. Paul O'Connor, a neurologist and MS specialist at Toronto's St. Michael's Hospital,
said his mind is open to future research validating Dr. Zamboni's conclusions.
But for now,
he said,
"the theory that vein narrowing is associated with MS is a theory held by a very small group of people only."
Clinics across Canada,
nevertheless, have been flooded with inquiries from thousands of patients requesting the therapy, or at least more information about it,
in the wake of positive media reports on the Italian research two months ago.
The news conference yesterday followed a meeting at Hamilton's St. Joseph's Health Care on Sunday of the small international group of researchers working on Dr. Zamboni's ideas.
A Hamilton team is planning to conduct its own study to try to replicate his findings,
joining research underway or in the works at the Universities of Buffalo and British Columbia.
In a paper published in December,
the Italian surgeon reported that 65 patients who had the balloon "angioplasty"
saw improvements on a standard scale of MS symptoms,
though the benefits disappeared for the most advanced cases by the end of 18 months.
Critics say the research at most raises the possibility of a new explanation of the disease,
but is far from definitive evidence.
They note that the patients all knew they were receiving the treatment and that there was no comparison group that did not receive the therapy,
opening the door to a possible placebo effect.
Scientists at yesterday's news conference said the Sunday meeting heard news from two other research groups
-- one in Jordan and another in Poland --
that found the same evidence as Dr. Zamboni of vein narrowing in MS sufferers,
and clear improvements when the treatment was performed.
Patients began remembering dreams again,
saw reductions in fatigue and an end to ringing in the ears,
said Dr. Ian Rodger, vice-president of research at St. Joseph's.
Such symptoms are all subjective,
however, and the changes could have been triggered by the placebo effect,
Dr. Freedman said.
Regardless,
the Polish and Jordanian results have yet to be published in a peer-reviewed journal.
The Buffalo team,
though,
is about to release findings from the first part of its work,
which involved looking for signs of vein narrowing in 500 MS patients.
Those early results
"are exciting scientifically and will generate a great deal of discussion among our colleagues [and] the worldwide press,"
Dr. Robert Zivadinov,
who is heading up the research and is another close ally of Dr. Zamboni,
said in a recent newsletter.
Meanwhile,
in response to questions yesterday,
the Italian surgeon repeatedly said patients would be justified seeking out imaging to determine if they have the vein narrowing, and undergoing the treatment if necessary.
Dr. Rodger said it is not surprising neurologists
-- the specialists who traditionally treat MS patients --
have been vocal in their skepticism about the ideas.
"This is not unusual in science when there is a new hypothesis,"
he told the news conference.
"The establishment tends not to embrace it immediately."
Tom Blackwell
Yhe National Post
Tuesday, February 09, 2010
http://www.nationalpost.com/news/story.htm...08&p=1
http://www.nationalpost.com/news/story.htm...08&p=2 |
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| Inviato: Mar Feb 09, 2010 Oggetto: |
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Ask for scans, says MS pioneer
Urges patients to ask for MRIs to check neck veins for blockages
MS patients are being told to seek MRI scans and treatment
by an Italian doctor pioneering a radical and unproven theory that the disease is vascular.
But it will be next to impossible to get the tests and surgery in Ontario, leaving thousands of patients vying for 100 spots in a Hamilton study testing the theory.
Dr. Paolo Zamboni
urged doctors to be more open to his ideas during a media conference at St. Joseph's Hospital yesterday -- his first North American appearance since his theory of
"chronic cerebrospinal venous insufficiency"
started gaining worldwide attention in the fall.
"If I should be a neurologist and read similar reports ...
the first thing I should do is to investigate the neck veins of my patients," said Zamboni.
"My suggestion is to investigate patients as soon as we can,
not to simply criticize."
He said the test to find out if veins draining blood from the brain are blocked and the procedure to improve the blood flow are already known to be safe and effective and should be available to MS patients.
"We think treatment of CCSVI can be done,"
he said.
"CCSVI is a vascular disease,
probably congenital,
with guidelines in diagnosis and treatment."
However,
the Ministry of Health made it clear yesterday it won't fund the scans or balloon angioplasty to treat it because it considers Zamboni's theory to be "experimental."
Canada has one of the highest rates of MS in the world
-- about one in 1,000 people have the disease --
so doctors say scanning them would overwhelm the health-care system.
"We'd swamp MRI capacity," said Dr. John Paulseth,
director of the MS clinic at McMaster University Medical Centre.
He said there isn't enough proof yet to use so many health resources to do the scans and surgery.
"I think his hypothesis is very worthy of further study,"
said Paulseth.
"But it needs to be corroborated."
That leaves MS patients with only one option in Ontario -- trying to get into the study being launched by St. Joseph's Healthcare, McMaster University and Hamilton Health Sciences.
It is putting in a proposal to the MS Society of Canada today to scan the veins in the brains and neck of 100 MS patients with varying degrees of the disease and compare it to the veins of 100 similar healthy people. They're looking to see if the veins of people with MS are blocked while healthy people's are not.
The researchers have already had more than 22,000 MS patients from around the world try to get into the study.
They are looking for other funders so they can test more people.
Only the University of British Columbia is doing similar testing in Canada.
Patients can pay to get the scans in the United States but it costs about $4,500.
It has left MS patients feeling hopeless just as the potential of a new treatment is coming to light. The mystery neurological disease was believed until now to be an auto-immune reaction, where the body attacks itself, with no cure or effective treatments.
"I'm trying to stay positive," said Jennifer Dennis, who lives in Whitby and is trying to get into the St. Joseph's study.
"I have hope (about the theory) but I don't know if I particularly have hope for me."
The 26-year-old single mom pleaded with health professionals to no avail to use the study protocols when they did a regularly-scheduled MRI in December.
"It's very frustrating,"
she said.
"Here is a potential medical breakthrough for a crippling disease and they don't want to do it. It only takes one person to take the chance but right now no one is willing to take the chance."
She worries by the time CCSVI is rigorously studied that it will be too late for her.
"This would be huge for me," she said. "My case hasn't progressed very far yet."
Dr. Mark Haacke, who works out of both McMaster and Detroit, says he thinks Canada is missing out on the opportunity to create a national database of MRI scans on MS patients.
"My personal opinion is that ... patients should be getting these images," he said.
Both Haacke and Zamboni acknowledge more study needs to be done, although they say early research out of Poland and Jordan is backing up Zamboni's theory.
Tomorrow,
the Buffalo Neuroimaging Analysis Center is expected to release the first results from its CCSVI study of 500 patients.
The results are predicted to back up Zamboni considering it is now moving forward from studying the MRI scans to testing the treatment.
"The preliminary results are exciting scientifically and will generate a great deal of discussion," stated the center's director Dr. Robert Zivadinov in a newsletter last week.
"This particular research is having an impact like no other we have known."
February 09, 2010
Joanna Frketich
The Hamilton Spectator
http://www.thespec.com/News/Local/article/718584 |
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per tradurre gli articoli
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selezionare tutto il testo e copiarlo
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nella pagina seguente
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a grandi linee si coglie il senso degli articoli |
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| Inviato: Mer Feb 10, 2010 Oggetto: |
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CCSVI or Blood Flow in the Brain and Venous Insufficiency in MS – Society Leaders Meet with Dr. Zamboni Today. Research Proposals Received from Around the World on February 9th Grant Request Deadline
Summary: Recent preliminary studies indicate that a phenomenon called CCSVI, a reported abnormality in blood drainage from the brain and spinal cord, may contribute to nervous system damage in MS. This hypothesis has been put forth by Dr. Paulo Zamboni from the University of Ferrara in Italy. Based on the results of his initial preliminary findings, Dr. Zamboni states that this pilot study warrants a subsequent larger and better controlled study to definitively evaluate the possible impact of CCSVI on the disease process in MS.
It has been proposed by Dr. Zamboni for further study that CCSVI may be corrected through endovascular surgery, which involves inserting a tiny balloon or stent into blocked veins in order to permit the flow of blood out of the brain and spinal cord, a procedure that has been called “liberation therapy” in some reports.
The National MS Society is pursuing this potential MS lead by undertaking the funding of new research on CCSVI in MS and has invited investigators worldwide to apply for grants on this topic. In response to a January 6 deadline, the National MS Society and the MS Society of Canada received numerous letters of intent from investigators from seven countries. Those letters of intent that met grant guidelines were invited to submit full research proposals, which are due February 9, 2010. The full planned funding timeline is below.
UPDATE:
National MS Society leaders met with Dr. Zamboni today in advance of his invited lecture at New York University’s MS Center of Excellence. In meetings and during today’s presentation, Dr. Zamboni suggested that if further evidence supports the link between MS and CCSVI, that its treatment may ultimately add to the arsenal of therapies available for MS. He emphasized the need for more research on his hypothesis, and noted that it is still not proven whether CCSVI is a cause of MS or possibly a product of MS. Dr. Zamboni also noted that people with MS should remain on their immunomodulatory therapies as has his wife after her endovascular surgery.
The Society shares in the public urgency to expeditiously advance any lead that has the potential of stopping, repairing or preventing MS.
CCSVI Research Funding Timeline
January 12, 2010 – Investigators whose letter of intent meet guidelines are invited to submit full research proposals.
February 9, 2010 – Deadline for proposals.
May 2010 – International panel of experts conducts an expedited review of all applications received through this special request for applications.
June 2010 – Funding decisions announced.
July 1, 2010 – Anticipated start date for funding of any successful research applications.
Taking advantage of the organizations' international scope, the applications will undergo an accelerated review process by an international panel being convened in cooperation with other MS Societies to ensure an expedited, coordinated response. If this hypothesis is confirmed, it could open up new research avenues into the underlying pathology of MS and new approaches to therapy.
Background: In a recent study by Dr. Zamboni and colleagues, the team evaluated abnormalities of blood outflow in major veins draining from the brain and spinal cord to the heart in 65 people with different types of MS, compared with 235 people who were either healthy or who had other neurological disorders. They used sophisticated sonography techniques to detect abnormalities of venous drainage. The investigators reported evidence of slowed and obstructed drainage in the veins draining the brain and spinal cord in many of those with MS. They also reported evidence of the opening of “substitute circles” – where the flow is deviated to smaller vessels to bypass obstructions, and these were often found to have reverse flow (reflux) of blood back into the brain.
The investigators call this venous obstruction “chronic cerebrospinal venous insufficiency,” or CCSVI. The treatment status of the people with MS (i.e., whether or not they were on an MS disease modifying drug) did not appear to influence whether they showed signs of CCSVI. The authors speculated that the reverse flow of blood back into the brain might set off the inflammation and immune-mediated damage that has been well described in MS. This study was published in June 2009
J Neurol Neurosurg Psychiatry 2009; 80:392-399.
It is proposed, but not yet proven, that CCSVI may be corrected through endovascular surgery. This surgery is being called “liberation therapy” in some reports. One study getting underway was described at the 2009 ECTRIMS meeting in September. It involves a collaboration between researchers in Italy, Buffalo (NY) and Birmingham (AL) who are attempting to treat venous obstruction in 16 individuals using balloon dilation such as has been used for many years to treat blocked arteries.
In a small, open-label study by Dr. Zamboni and colleagues published in December 2009, the team evaluated the safety and preliminary outcomes of vascular surgery (percutaneous transluminal angioplasty) in 35 individuals with relapsing-remitting MS, 20 with secondary-progressive MS, and 10 with primary-progressive MS.
( J Vasc Surg 2009; 50:1348-1358)
http://www.jvascsurg.org/article/S0741-5214(09)01568-7/abstract
They reported some positive impacts and suggested that controlled trials were necessary to better determine potential safety and benefits of this procedure.
Next Steps: The National MS Society has prompted communications between MS Societies worldwide and leveraged resources to ensure an open exchange of information and a coordinated and expedited approach to conducting and evaluating additional research on CCSVI. On December 16, 2009, the Society released a worldwide Request for Applications to the scientific community to explore CCSVI, and is collaborating with the MS Society of Canada and possibly other societies to convene an international panel of experts to conduct an accelerated review of proposals. We are also working with our sister MS Societies around the world to assure that our research strategies are coordinated. Through an internationally coordinated and expedited review process, new CCSVI research projects are expected to begin July 1, 2010. (See Research Funding Timeline above for more details.)
According to the Buffalo Neuroimaging Analysis Center, although 500 subjects have already been selected for their initial combined transcranial and extracranial venous doppler evaluation study, they are still seeking participants for a larger-scale clinical study with the aim of evaluating the prevalence of venous obstruction in people with MS. This study does not involve treatment of obstructions. The Buffalo investigators released preliminary findings in a press release and plan to continue the study.
To get the quickest answers and most reliable results about benefits and risks of any surgical procedure that might attempt to address blood flow in or out of the brain, it is crucial that such surgery be performed only as part of controlled trials, especially since there have been anecdotal reports of surgical attempts to treat CCSVI in people with MS resulting in adverse events, including one reported death.
Many questions remain about how and when this phenomenon might play a role in nervous system damage seen in MS, and at the present time there is insufficient evidence to prove that this phenomenon is the cause of MS.
Frequently Asked Questions About CCSVI and MS
Q: What is the National MS Society’s view of CCSVI?
A: In trying to find the cause and more effective treatments for a disease as complex and unpredictable as multiple sclerosis, the Society is steadfast in its commitment to pursue all promising avenues of research that can lead to improved treatments and ultimately, a cure. It is important for researchers to think outside the box and we believe Dr. Zamboni has done this. His hypothesis is a path that must be more fully explored and Dr. Zamboni himself has stated that additional research is essential to evaluate it.
Q: Will the National MS Society fund research into CCSVI in MS?
A: The National MS Society is pursuing follow-up research in how CCSVI might be involved in the MS process and we have invited investigators from around the world whose research is relevant to MS to submit proposals to apply for grants that would explore this lead. These applications will undergo an accelerated review process and an announcement on what grants are to be funded will be made in the late spring.
Q: Do the reports of a possible association between insufficient vein drainage and MS mean that MS is caused by venous insufficiency?
A: Based on results published about these findings to date, there is not enough evidence to say that obstruction of veins causes MS, or to determine when this obstruction may occur in the course of disease. Dr. Zamboni's preliminary research reported that 47% of the people who had the blockage in their internal jugular veins treated surgically had a recurrence of blockage by the end of the initial study. This is one of many reasons why additional research into what all this information might mean to the worldwide effort to arrest MS is so important.
Q: If CCSVI turns out to be important in MS, can it be treated?
A: It is too soon to determine how CCSVI might best be treated. Surgical procedures for CCSVI in MS are still experimental and should be undertaken only as part of formal clinical trials that include all of the standard safeguards that are followed in such trials because of known adverse events and at least one death that occurred as a result of a surgical treatment protocol.
Q: How can I get involved in research on CCSVI in MS?
A: A larger-scale clinical study is getting underway in Buffalo, New York and is now recruiting participants nationwide with the aim of evaluating the prevalence of venous obstruction in people with MS. This study does not involve treatment of venous obstructions.
Q: While research is underway to better understand the possible relationship between CCSVI and the MS disease process, why should I not try this endovascular surgery to prevent my MS from worsening?
A: Though this is a decision that patients with MS need to make with their neurologists, we are not recommending experimental endovascular surgery at this time because of known adverse events and at least one death that occurred as a result of the surgical treatment protocol.
For anyone considering endovascular surgery, the following are some of the possible adverse events that need to be considered:
Complications and even death can occur including the risk of infection at the puncture site, risk for damage to the blood vessel, risk of internal or external bleeding if anti-coagulants are used, and, if a stent is inserted in an attempt to keep the vein from narrowing once more, there is a risk that the stent may become dislodged and go to the heart, which could cause death or the need for emergency heart surgery.
Q: I have MS. Should I be tested for signs of CCSVI?
A: We do not recommend testing for signs of CCSVI unless you are involved in a research study exploring this phenomenon, since at this time there is no proven therapy to resolve any abnormalities that might be observed, and it is still not clear whether relieving venous obstructions would be beneficial or safe.
Q: Does CCSVI make the standard treatments of MS meaningless?
A: No. There is ample evidence proving that the FDA-approved therapies for MS provide benefit for people with most forms of MS.
Q: Should the Society be doing more to support the work of Dr. Zamboni, as some people have suggested?
A: Dr. Zamboni has called for more research to move his preliminary CCSVI research forward and the Society is leading the way in advancing that effort. We have reached out to MS scientists from around the world to fund projects that will explore Dr. Zamboni’s leads, have expedited the grant review process, and brought together international MS organizations and experts to share information and move the research process forward. As in all pilot research, Dr. Zamboni’s work has raised as many questions as it has potentially answered. The Society’s role is to help ensure long term that while we are seeking to stop MS and repair the damage done by the disease, we are also working to ensure that whether someone is diagnosed with MS today or ten years from today that there will be safe and effective treatment options available. It is research such as this that has made MS a treatable disease today.
Q: What are some of the questions raised in Dr. Zamboni’s research that need to be explored?
A: Why has venous obstruction recurred in such a large percentage of patients who underwent the endovascular surgery and what does that mean to the disease process for these individuals? Is there abnormal venous obstruction in all people with MS? How do we determine who might best benefit from endovascular surgery? Can Dr. Zamboni’s results be replicated in larger controlled and blinded studies of MS patients? If so, when does CCSVI occur in the course of the disease – is it a cause or effect of the disease process? How can we address the known risks associated with endovascular surgery? Acknowledging the questions that Dr. Zamboni himself has raised only helps in designing the necessary research to secure the needed answers.
Q: Is it true as some people have suggested that the Society’s dependence on money from the pharmaceutical industry is impeding its support of Dr. Zamboni’s research?
A: No. Less than 4% of the Society’s annual income is received from the pharmaceutical industry. The majority of the funds that the Society uses to support our research and service programs come from special events and the donations of private individuals committed to ending MS. Further, we are fast-tracking our efforts to fund research regarding CCSVI and working in partnerships with MS organizations and experts worldwide to better understand and move forward Dr. Zamboni’s findings.
Q. How can I continue to be informed of CCSVI developments as they occur?
A: As new information becomes available about CCSVI, it will be posted on the National MS Society’s Web site
www.nationalMSsociety.org
Feb 09, 2010
http://www.nationalmssociety.org/news/news...x?nid=2206 |
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Cinzia33
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| Inviato: Gio Feb 11, 2010 Oggetto: |
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http://abclocal.go.com/kgo/story?section=n...id=7270566
SAN FRANCISCO (KGO) -- There's a radical new theory developing on the cause of multiple sclerosis. MS has long been considered an auto-immune disorder, in which the body attacks itself.
But new research points to a vascular problem and early studies show it might be stopped or even reversed through surgery. It is generating excitement and words of caution from doctors who say the science doesn't yet back it up.
Sammy Jo Wilkinson was just turning 30 when her body went through a dramatic change. The diagnosis was multiple sclerosis, an incurable, often disabling disease that attacks the nervous system and there's no known cause.
Now 15 years later, sees herself similar to a stroke patient in recovery.
"I've had this uncontrolled micro-stroke going on all over my brain, iron deposits from the reflux of blood hitting the blockage and coming back into the brain and lack of oxygen in the brain, so this has been going on in my head for 15 years, leaving all kinds of scarring and damage," Sammy Jo said.
What Sammy Jo describes is a radical new theory developed by Doctor Paolo Zamboni of Italy. He's not a neurologist but a vascular surgeon. His research began when his wife was diagnosed with MS. He calls it CCSVI -- chronic cerebrospinal venous insufficiency.
"Three major pathways are frequently blocked by narrowing in patients affected by multiple sclerosis," he said.
Zamboni believes the blockage in these veins in the neck area causes a reverse flow of blood back into the brain, damaging the nervous system. He found the condition in 90 percent of Italian MS patients he studied.
His solution, he thinks, is opening the jugular veins with balloon angioplasty or stents, techniques originally developed for opening blocked arteries.
"We found for example, patients with early disease, we have full recovery of symptoms. Patients with severe disabilities certainly did not recover but were less fatigued, less tired, more positive," Zamboni said.
And as word spread on line about a possible new cause of MS and a treatment for it, patients started pushing for the surgery now, including Sammy Jo.
"It does have risks, but it was a risk I was willing take, especially with the outcomes I was hearing about from some patients," she said.
Sammy Jo's web research led her to the one doctor believed to be performing the operation in the U.S. -- Dr. Michael Dake, professor of cardiothoracic surgery at Stanford.
After confirming a severe narrowing of her jugular veins, Dr. Dake inserted three stents in October. But in December, he stopped performing the procedure.
The university won't say why and prohibits him from speaking with ABC7, but released this statement: "As interest in the CCSVI procedure has grown, Dr. Dake and Stanford have determined that the initiation of a clinical development program leading to a possible clinical trial will be the next step."
In fact, the National Multiple Sclerosis Society is coordinating a worldwide effort to conduct and evaluate research on CCSVI -- grant money will be awarded in June. Still, the Society's VP of research characterizes the Zamboni hypothesis as a long shot and cautions patients should only undergo the procedure as part of a clinical trial.
"Currently, there is not enough evidence for me to recommend it to my patients," Dr. Ari Green from UCSF said.
Green is assistant Director of the Multiple Sclerosis Center at UCSF. He believes CCSVI is an intriguing theory, though very preliminary and in need of replication.
"What we don't want to do is hurt people. In this instance, there have already been two cases of people who had stents placed who had serious consequences, one death, one person who needed surgery in which they had to open up the patient's chest to fish out a stent that had migrated away from the site at which it was placed," he said.
"There are things that could cause worry, but I'm a lot less worried than I was just about becoming disabled from MS," Sammy Jo said.
Now two months post surgery, Sammy Jo says the muscle spasms that kept her awake at night are gone. Her husband noticed an immediate change in her appearance.
"The thing that really struck my attention was that her complexion came back, from a jaundiced look to pink and healthier looking skin, that was almost immediate," Sammy Jo's husband Doug Flomer said.
Critics point to the placebo effect -- the power of the mind to affect dramatic change in the body, which is why randomized clinical trials of the CCSVI diagnosis and procedure are critical.
Dr. Zamboni agrees.
"We are on the way to solve a puzzle," he said.
Scientists at the University of Buffalo just announced preliminary results of their research into the link between CCSVI and MS patients.
Using Doppler ultrasound they found more than 55 percent of patients with MS had the narrowing of the veins, compared to just 22 percent of the health controls.
Written and produced by Tim Didion
Carolyn Johnson
More: Bio, E-mail, News Team
10 febbraio 2010 |
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miluna
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Residenza: miciolandia
Messaggi: 11530 |
| Inviato: Gio Feb 11, 2010 Oggetto: |
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rispetto all' Italia
sono una valanga gli articoli dall' estero cinzia
metto solo i link
faccio prima  |
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miluna
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Residenza: miciolandia
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miluna
affezionato
Residenza: miciolandia
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miluna
affezionato
Residenza: miciolandia
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miluna
affezionato
Residenza: miciolandia
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miluna
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miluna
affezionato
Residenza: miciolandia
Messaggi: 11530 |
| Inviato: Lun Mar 15, 2010 Oggetto: |
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pronto1
Residenza: venezia centro storico
Messaggi: 1527 |
| Inviato: Lun Mar 15, 2010 Oggetto: |
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visti questi filmati esplicitativi mi convinco sempre più che zamboni e salvi hanno imboccato la retta via |
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miluna
affezionato
Residenza: miciolandia
Messaggi: 11530 |
| Inviato: Lun Mar 15, 2010 Oggetto: |
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sono d' accordo pronto1
all' estero non si parla d' altro
solo in Italia siamo indietro e parecchio!
è evidente che Zamboni e Salvi siano ostacolati |
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miluna
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Residenza: miciolandia
Messaggi: 11530 |
| Inviato: Lun Mar 15, 2010 Oggetto: |
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eccomi
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| Inviato: Lun Mar 15, 2010 Oggetto: |
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miluna
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Residenza: miciolandia
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| Inviato: Lun Mar 15, 2010 Oggetto: |
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eccomi
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Messaggi: 2648 |
| Inviato: Mar Mar 16, 2010 Oggetto: ccsvi dall'estero |
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si si questo video l'ho visto su youtube ... ma l'hanno fatto in Polonia ... avrei voluto sapere se sti tedesken ne parlano
comunque grassie Milu' |
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pronto1
Residenza: venezia centro storico
Messaggi: 1527 |
| Inviato: Mar Mar 16, 2010 Oggetto: |
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QUESTO VIDEO è IN OLANDESE CON I SOTTOTITOLI IN INGLESE
NON HO ANCORA CAPITO DOVE è STATO GIRATO |
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miluna
affezionato
Residenza: miciolandia
Messaggi: 11530 |
| Inviato: Mar Mar 16, 2010 Oggetto: Re: ccsvi dall'estero |
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| eccomi ha scritto: | si si questo video l'ho visto su youtube ... ma l'hanno fatto in Polonia ... avrei voluto sapere se sti tedesken ne parlano
comunque grassie Milu' |
simo
scusa la domanda  
il tedesco lo capisci? |
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miluna
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Residenza: miciolandia
Messaggi: 11530 |
| Inviato: Mar Mar 16, 2010 Oggetto: |
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miluna
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markus75
Messaggi: 61 |
| Inviato: Mar Mar 16, 2010 Oggetto: |
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| pronto1 ha scritto: | QUESTO VIDEO è IN OLANDESE CON I SOTTOTITOLI IN INGLESE
NON HO ANCORA CAPITO DOVE è STATO GIRATO |
questo video l'ho linkato appena uscito sul post "ultima intervista a Zamboni".. é preso da nederland1 ovvero la prima rete olandese..
nel video parla una "liberata" olandese in Polonia, un'altra solo esaminata.. e poi il responsabile della ricerca presso il VU ospedale accademico di Amsterdam.. dove stanno effettuando lo studio su 20 pazienti.. per il resto dopo quel servizio... non si é mai sentito nulla... infatti in NL in molti vanno a pagamento in Polonia e in Germania..
markus |
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Inserimento non attivo. L'argomento è bloccato oppure non sei identificato.
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