Hmm... the Lancet on shortfall of study standards...since only summary, still do not understand the full colour of this paper... Paper in process, or anyone already has link?
http://www.ncbi.nlm.nih.gov/pubmed/20398855
Lancet Neurol. 2010 May;9(5):464-5.
Venous abnormalities and multiple sclerosis: another breakthrough claim?
Qiu J.
jane@janeqiu.com
PMID: 20398855 [PubMed - in process]
http://www.msif.org/en/research/ms_rese ... rmali.html
summary: Recent reports of a possible link between venous abnormalities and MS have received high levels of interest from the media. At present, some people with MS are seeking venous testing and receiving endovascular interventions if the result turns out to be abnormal. In the opinion of the author, Zamboni’s study falls short of the standards and quality that are acceptable in clinical research, and confirm that during years of research they have seen all sorts of claimed breakthroughs that have come and gone in the field of MS.
authors: Qui, J. source: Lancet Neurol. 2010 May category: Diagnosis
Media Coverage on CCSVI!!!!!!!!!
1:The Zamboni theory: still too soon to call it an MS cure
http://www.kapuskasingtimes.com/Article ... ?e=2556698
2:Legal fears thwart doctor's bid for ‘liberation' from MS pain
<shortened url>
http://www.kapuskasingtimes.com/Article ... ?e=2556698
2:Legal fears thwart doctor's bid for ‘liberation' from MS pain
<shortened url>
We must learn our limits. We are all something, but none of us are everything.
GuRu
RRMS Dx 07/09
GuRu
RRMS Dx 07/09
BramptonGuardian Article: Man gets booted from MS Walk
www.bramptonguardian.com
Last week, Mark Stewart, 41, and his 10-year-old son arrived at the Terry Miller Recreation Centre to take part in the 2010 Brampton-Caledon MS Walk. They weren't allowed to take part because of a sign on Stewart's wheelchair. George Beshiri
www.bramptonguardian.com
Last week, Mark Stewart, 41, and his 10-year-old son arrived at the Terry Miller Recreation Centre to take part in the 2010 Brampton-Caledon MS Walk. They weren't allowed to take part because of a sign on Stewart's wheelchair. George Beshiri
Canadians can watch W5 AGAIN Sat May 1. I received this today from Rebecca:
Please note that tomorrow night there will be a follow-up report on W5. Click on the link for more information:
http://www.facebook.com/event.php?eid=115607475136662
Rebecca Cooney
MS Liberation
www.msliberation.ca
Hope you in the US can see it too1
DL
Please note that tomorrow night there will be a follow-up report on W5. Click on the link for more information:
http://www.facebook.com/event.php?eid=115607475136662
Rebecca Cooney
MS Liberation
www.msliberation.ca
Hope you in the US can see it too1
DL
QR77 RADIO - APRIL 26, 2010
Networking power of the web shifting power balance between docs and patients
Helen Branswell, Medical Reporter, THE CANADIAN PRESS
http://www.am770chqr.com/News/National/ ... ?id=207877
TORONTO - Rebecca Cooney may have a debilitating, degenerative disease, but
that doesn't mean she's ready to automatically defer to the authority of the
medical community. "I've never been a person who thinks somebody else can
make decisions for me. Even my doctors - they're the experts, I take what
they say, but I have my own mind and my own information," says Cooney, 42,
who has been living with multiple sclerosis for the past 18 years. "I'm not
one that believes the Pope is the only one who can speak to God. I can speak
to God myself."
There have always been patients with Cooney's independent bent. But these
days there seems to be hordes of them, due in large measure to the
extraordinary reach of the Internet. A technology that makes a pioneering or
profiteering clinic somewhere overseas a mere Google search away, the
Internet is changing the nature of patient advocacy. It's amping up the
activism.
And those more activist patients, who share information and strategies
through email, discussion boards and Facebook, are actually in some cases
altering the research agenda in fields such as cancer, alternative medicine
and now multiple sclerosis. Some want access to experimental drugs or
therapies before science has proven that they are safe or useful. In other
cases, they are agitating for a say in which theories, techniques or
treatments get research funding.
Patients like Cooney are thrilled about what she describes as the huge power
shift she has seen in the years since she was first diagnosed. "The Internet
- email - has really allowed me and most of the MS patients to really work
in conjunction with the doctors, which we've never been able to do," she
says. "It used to be almost what your neurologist said or what your doctor
said was God. You couldn't really debate it. You couldn't say anything.
Because you didn't know. Now, I'm empowered. I can find out information."
Other players are not so enthusiastic, saying the change is fostering
tension within disease advocacy organizations and between doctors and their
patients. Such is the case with multiple sclerosis, where the patient
community is aflame with hope about a new and as-yet unproven claim by Dr.
Paolo Zamboni that clogged neck veins may be triggering the disease or
contributing to the destruction it wreaks. The condition has been dubbed
chronic cerebrospinal venous insufficiency or CCSVI.
Individually, a number of MS patients have already flown to clinics in
places like Poland to undergo a vein opening operation that has been given
the hope-inspiring name "the liberation procedure."
Collectively many MS patients are pushing the MS Society of Canada and the
National Multiple Sclerosis Society in the U.S. to fast-track funding for
CCSVI research.
The societies have jointly issued a special call for research proposals and
will review them next month. The first funding awards are due to be
announced in June. Donors - the societies get the bulk of their funding from
the patient community - are even being allowed to earmark donations
specifically to CCSVI work.
Dr. Aaron Miller is a neurologist and head of the MS clinic at New York's
Mount Sinai Medical Center. As the chief medical officer of the National
Multiple Sclerosis Society, he tries to keep an open mind towards new claims
about MS, noting that there are times when ideas from out of left field
propel scientific advances.
He points to the example of stomach ulcers, which were long thought to be
the product of stress. Then Barry Marshall and Robin Warren, two Australian
researchers, proved they are caused by a bacterium, Helicobacter pylori and
are treatable with antibiotics.
Marshall and Warren won the 2005 Nobel Prize for Medicine. Still, those
kinds of paradigm shifting successes aren't everyday occurrences. Miller
suspects CCSVI isn't going to join that list but he fears that answer won't
be arrived at quickly or cheaply. "We know that research dollars are
extremely scarce, especially these days. And when you have to divert large
sums of money to investigate something that's probably going to be barking
up the wrong tree, it certainly is distressing," Miller says.
He points out that the MS community has seen other provocative claims in the
past, prior to the Internet's emergence as a communications tool for the
masses. In the early 1990s, for instance, the TV newsmagazine "60 Minutes"
aired a piece advancing the notion dental amalgam might be the cause of MS.
Patients flocked to dentists to have old-fashioned fillings removed. "But
the pace at which this happens now and the numbers of people to whom these
stories and the information reaches is astronomical compared to what it once
was," says Miller, who notes that Internet counselling has become a part of
his routine interactions with patients. "It's a real challenge in how to
interact with patients on issues like this," he admits.
The scenario is unfolding in other subspecialties of medicine too. Dr.
Maurie Markman, vice-president for clinical research at the University of
Texas M.D. Anderson Cancer Center, says the advocacy community has long been
vocal in cancer care and research.
Some bristle when they are told putative treatments need to be tested in
staged clinical trials, he says. "Online, the New England Journal of
Medicine has no more authority than Mr. Smith's or Mrs. Smith's website
telling you that 'Here's the cure for cancer,"' Markman says.
He explains the kind of pushback those insisting on proper trials sometimes
encounter: "Five thousand people who are online say it's correct. So who are
you ... Dr. Scientist, to tell me I'm wrong?"
What's the answer? "It's not confrontation," Markman continues. "It's
discussion and an awful lot more effort to explain."
Still, a confrontational dynamic can emerge. The hesitancy of MS specialists
towards CCSVI has frustrated and angered some patients. Some doctors who are
viewed as impeding access to the treatment have received abusive hate mail.
People on both sides of the divide say the situation has given rise to an
us-versus-them mentality. "I do think the Internet has created an
us-and-them thing," admits Cooney, who has co-founded a group called MS
Liberation that is lobbying for the procedure to be available in Canada. "I
don't like it. I wish it would stop. But ... I don't think it will until
both people (parties) acknowledge that the playing field has changed."
"I think the patients are not giving the neurologists and the doctors the
time to really learn about this and to investigate it properly. But I also
think the neurologists don't acknowledge that it's a different ball game.
They're used to holding back information from the patients. And what's
happening is they can't do that anymore."
Networking power of the web shifting power balance between docs and patients
Helen Branswell, Medical Reporter, THE CANADIAN PRESS
http://www.am770chqr.com/News/National/ ... ?id=207877
TORONTO - Rebecca Cooney may have a debilitating, degenerative disease, but
that doesn't mean she's ready to automatically defer to the authority of the
medical community. "I've never been a person who thinks somebody else can
make decisions for me. Even my doctors - they're the experts, I take what
they say, but I have my own mind and my own information," says Cooney, 42,
who has been living with multiple sclerosis for the past 18 years. "I'm not
one that believes the Pope is the only one who can speak to God. I can speak
to God myself."
There have always been patients with Cooney's independent bent. But these
days there seems to be hordes of them, due in large measure to the
extraordinary reach of the Internet. A technology that makes a pioneering or
profiteering clinic somewhere overseas a mere Google search away, the
Internet is changing the nature of patient advocacy. It's amping up the
activism.
And those more activist patients, who share information and strategies
through email, discussion boards and Facebook, are actually in some cases
altering the research agenda in fields such as cancer, alternative medicine
and now multiple sclerosis. Some want access to experimental drugs or
therapies before science has proven that they are safe or useful. In other
cases, they are agitating for a say in which theories, techniques or
treatments get research funding.
Patients like Cooney are thrilled about what she describes as the huge power
shift she has seen in the years since she was first diagnosed. "The Internet
- email - has really allowed me and most of the MS patients to really work
in conjunction with the doctors, which we've never been able to do," she
says. "It used to be almost what your neurologist said or what your doctor
said was God. You couldn't really debate it. You couldn't say anything.
Because you didn't know. Now, I'm empowered. I can find out information."
Other players are not so enthusiastic, saying the change is fostering
tension within disease advocacy organizations and between doctors and their
patients. Such is the case with multiple sclerosis, where the patient
community is aflame with hope about a new and as-yet unproven claim by Dr.
Paolo Zamboni that clogged neck veins may be triggering the disease or
contributing to the destruction it wreaks. The condition has been dubbed
chronic cerebrospinal venous insufficiency or CCSVI.
Individually, a number of MS patients have already flown to clinics in
places like Poland to undergo a vein opening operation that has been given
the hope-inspiring name "the liberation procedure."
Collectively many MS patients are pushing the MS Society of Canada and the
National Multiple Sclerosis Society in the U.S. to fast-track funding for
CCSVI research.
The societies have jointly issued a special call for research proposals and
will review them next month. The first funding awards are due to be
announced in June. Donors - the societies get the bulk of their funding from
the patient community - are even being allowed to earmark donations
specifically to CCSVI work.
Dr. Aaron Miller is a neurologist and head of the MS clinic at New York's
Mount Sinai Medical Center. As the chief medical officer of the National
Multiple Sclerosis Society, he tries to keep an open mind towards new claims
about MS, noting that there are times when ideas from out of left field
propel scientific advances.
He points to the example of stomach ulcers, which were long thought to be
the product of stress. Then Barry Marshall and Robin Warren, two Australian
researchers, proved they are caused by a bacterium, Helicobacter pylori and
are treatable with antibiotics.
Marshall and Warren won the 2005 Nobel Prize for Medicine. Still, those
kinds of paradigm shifting successes aren't everyday occurrences. Miller
suspects CCSVI isn't going to join that list but he fears that answer won't
be arrived at quickly or cheaply. "We know that research dollars are
extremely scarce, especially these days. And when you have to divert large
sums of money to investigate something that's probably going to be barking
up the wrong tree, it certainly is distressing," Miller says.
He points out that the MS community has seen other provocative claims in the
past, prior to the Internet's emergence as a communications tool for the
masses. In the early 1990s, for instance, the TV newsmagazine "60 Minutes"
aired a piece advancing the notion dental amalgam might be the cause of MS.
Patients flocked to dentists to have old-fashioned fillings removed. "But
the pace at which this happens now and the numbers of people to whom these
stories and the information reaches is astronomical compared to what it once
was," says Miller, who notes that Internet counselling has become a part of
his routine interactions with patients. "It's a real challenge in how to
interact with patients on issues like this," he admits.
The scenario is unfolding in other subspecialties of medicine too. Dr.
Maurie Markman, vice-president for clinical research at the University of
Texas M.D. Anderson Cancer Center, says the advocacy community has long been
vocal in cancer care and research.
Some bristle when they are told putative treatments need to be tested in
staged clinical trials, he says. "Online, the New England Journal of
Medicine has no more authority than Mr. Smith's or Mrs. Smith's website
telling you that 'Here's the cure for cancer,"' Markman says.
He explains the kind of pushback those insisting on proper trials sometimes
encounter: "Five thousand people who are online say it's correct. So who are
you ... Dr. Scientist, to tell me I'm wrong?"
What's the answer? "It's not confrontation," Markman continues. "It's
discussion and an awful lot more effort to explain."
Still, a confrontational dynamic can emerge. The hesitancy of MS specialists
towards CCSVI has frustrated and angered some patients. Some doctors who are
viewed as impeding access to the treatment have received abusive hate mail.
People on both sides of the divide say the situation has given rise to an
us-versus-them mentality. "I do think the Internet has created an
us-and-them thing," admits Cooney, who has co-founded a group called MS
Liberation that is lobbying for the procedure to be available in Canada. "I
don't like it. I wish it would stop. But ... I don't think it will until
both people (parties) acknowledge that the playing field has changed."
"I think the patients are not giving the neurologists and the doctors the
time to really learn about this and to investigate it properly. But I also
think the neurologists don't acknowledge that it's a different ball game.
They're used to holding back information from the patients. And what's
happening is they can't do that anymore."
Canadian researchers probe controversial MS research:
http://www.montrealgazette.com/health/C ... story.html
http://www.montrealgazette.com/health/C ... story.html
We must learn our limits. We are all something, but none of us are everything.
GuRu
RRMS Dx 07/09
GuRu
RRMS Dx 07/09
New discovery: Liberation treatment for multiple sclerosis
http://www.tulsaworld.com/scene/article ... arPh461241
http://www.tulsaworld.com/scene/article ... arPh461241
We must learn our limits. We are all something, but none of us are everything.
GuRu
RRMS Dx 07/09
GuRu
RRMS Dx 07/09
D’Escousse woman behind rally for multiple sclerosis treatment:
http://www.capebretonpost.com/News/Loca ... reatment/1
http://www.capebretonpost.com/News/Loca ... reatment/1
We must learn our limits. We are all something, but none of us are everything.
GuRu
RRMS Dx 07/09
GuRu
RRMS Dx 07/09
MS Society has placed no limit on funding controversial research:
http://www.edmontonjournal.com/Society+ ... story.html
http://www.edmontonjournal.com/Society+ ... story.html
We must learn our limits. We are all something, but none of us are everything.
GuRu
RRMS Dx 07/09
GuRu
RRMS Dx 07/09
1. MS sufferer Audrey slams NHS op snub
http://www.highland-news.co.uk/news/ful ... _snub.html
2. Speed up medical trials for those in need :
http://www.highland-news.co.uk/news/ful ... _need.html
http://www.highland-news.co.uk/news/ful ... _snub.html
2. Speed up medical trials for those in need :
http://www.highland-news.co.uk/news/ful ... _need.html
We must learn our limits. We are all something, but none of us are everything.
GuRu
RRMS Dx 07/09
GuRu
RRMS Dx 07/09