Ik kan het niet meer bijhouden al die trials:haha:
Hoe is het eigenlijk in Nieuwgein?? Ik heb nog geen resultaten kunnen vinden.
CCSVI - 8
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Marsei
MS treatment trials face setback in Saskatchewan
MS treatment trials face setback in Saskatchewan
MS treatment [URL="http://www.ctv.ca/CTVNews/Canada/201106 ... ks-110629/"][U]trials[/U][/URL] face setback in Saskatchewan
[QUOTE]The first province to pledge clinical trials of a controversial treatment for multiple sclerosis says there's been "a setback."[/QUOTE] [QUOTE]"The understanding I have is that it didn't meet some of the protocols that were set out by the expert panel. In other words, there are some pieces lacking within the research proposal," said McMorris.[/QUOTE][QUOTE]In April, the Manitoba government ponied up $5 million to partner with Saskatchewan.
The actual start of clinical trials was to depend upon the successful research team's plan and timeline.
The health research foundation said on its website that the goal was to have a process in place for proceeding with clinical trials by the spring of 2011. But there was no word on how things were going until McMorris said Wednesday that the lone proposal had been rejected[/QUOTE].[QUOTE]Federal Health Minister Leona Aglukkaq announced the move Wednesday in spite of recent studies that have cast doubt on narrowed neck veins as the primary cause of the debilitating illness. She said a scientific working group established by the federal government last August has unanimously agreed that a preliminary clinical trial into a controversial vein-widening procedure should proceed.
The Canadian Institutes of Health Research said it's hoped the preliminary trials will begin early in 2012. But the CIHR conceded it could take years before determining whether liberation therapy works and should be widely available in Canada.
McMorris isn't ruling out the possibility of trials in Saskatchewan, but he couldn't say when they might start. He said the province is interested in working with the federal government on a plan.
[/QUOTE][QUOTE]McMorris said people with the disease will have to be patient.[/QUOTE]
Dit schiet lekker op zo... :hmmm:
MS treatment [URL="http://www.ctv.ca/CTVNews/Canada/201106 ... ks-110629/"][U]trials[/U][/URL] face setback in Saskatchewan
[QUOTE]The first province to pledge clinical trials of a controversial treatment for multiple sclerosis says there's been "a setback."[/QUOTE] [QUOTE]"The understanding I have is that it didn't meet some of the protocols that were set out by the expert panel. In other words, there are some pieces lacking within the research proposal," said McMorris.[/QUOTE][QUOTE]In April, the Manitoba government ponied up $5 million to partner with Saskatchewan.
The actual start of clinical trials was to depend upon the successful research team's plan and timeline.
The health research foundation said on its website that the goal was to have a process in place for proceeding with clinical trials by the spring of 2011. But there was no word on how things were going until McMorris said Wednesday that the lone proposal had been rejected[/QUOTE].[QUOTE]Federal Health Minister Leona Aglukkaq announced the move Wednesday in spite of recent studies that have cast doubt on narrowed neck veins as the primary cause of the debilitating illness. She said a scientific working group established by the federal government last August has unanimously agreed that a preliminary clinical trial into a controversial vein-widening procedure should proceed.
The Canadian Institutes of Health Research said it's hoped the preliminary trials will begin early in 2012. But the CIHR conceded it could take years before determining whether liberation therapy works and should be widely available in Canada.
McMorris isn't ruling out the possibility of trials in Saskatchewan, but he couldn't say when they might start. He said the province is interested in working with the federal government on a plan.
[/QUOTE][QUOTE]McMorris said people with the disease will have to be patient.[/QUOTE]
Dit schiet lekker op zo... :hmmm:
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Marsei
[URL="https://www.facebook.com/montelbwilliams?sk=wall"][U]FB[/U][/URL] 4 minuten geleden: [QUOTE]UPDATE- Montel is out of surgery and it went extremely well and he is out of recovery and sleeping. Montel wants everyone to know how much he appreciates your thoughts and prayers. He will updating you tomorrow.[/QUOTE]
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Marsei
CTV News: interview met Bob
CTV News: interview met Bob
[URL="http://www.ctv.ca/canadaam/?video=493429"][U]CTV News[/U][/URL]: Interview met Bob die bijna een jaar geleden behandeld is.
[URL="http://www.ctv.ca/canadaam/?video=493429"][U]CTV News[/U][/URL]: Interview met Bob die bijna een jaar geleden behandeld is.
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Marsei
De bedenkingen van Christopher Alkenbrack
De bedenkingen van Christopher Alkenbrack
De [URL="http://www.youtube.com/watch?v=NUNHPA-v ... ata_player"][U]bedenkingen[/U][/URL] van Christopher Alkenbrack mbt de trials in Canada.
De [URL="http://www.youtube.com/watch?v=NUNHPA-v ... ata_player"][U]bedenkingen[/U][/URL] van Christopher Alkenbrack mbt de trials in Canada.
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Marsei
Interview met Patrick Farrell
Interview met Patrick Farrell
[URL="http://podcast.cbc.ca/mp3/podcasts/onta ... _99739.mp3"]Interview[/URL] met Patrick Farrell, de echtgenoot van Barb.
Voor mensen die het verhaal van Barb nog niet kennen:
Barb Farrell zou op 22 april 2010 behandeld worden in Canada. Op 20 april mocht Dr Sandy McDonald echter geen behandelingen meer uitvoeren.
In de daarop volgende periode ging Barb heel snel achteruit en werd ze in het ziekenhuis opgenomen. Ze kon niet meer bewegen, slikken en praten; ook ademen ging moeilijk. Behandeling in het buitenland was niet meer mogelijk omdat ze niet meer in staat was te reizen.
Ze zou opgenomen worden in een hospice toen dankzij een anonieme donatie behandeling buiten Canada voor Barb toch mogelijk werd. Ze werd met een vliegtuig met ambulance faciliteiten opgehaald om in de VS behandeld te worden.
[URL="http://podcast.cbc.ca/mp3/podcasts/onta ... _99739.mp3"]Interview[/URL] met Patrick Farrell, de echtgenoot van Barb.
Voor mensen die het verhaal van Barb nog niet kennen:
Barb Farrell zou op 22 april 2010 behandeld worden in Canada. Op 20 april mocht Dr Sandy McDonald echter geen behandelingen meer uitvoeren.
In de daarop volgende periode ging Barb heel snel achteruit en werd ze in het ziekenhuis opgenomen. Ze kon niet meer bewegen, slikken en praten; ook ademen ging moeilijk. Behandeling in het buitenland was niet meer mogelijk omdat ze niet meer in staat was te reizen.
Ze zou opgenomen worden in een hospice toen dankzij een anonieme donatie behandeling buiten Canada voor Barb toch mogelijk werd. Ze werd met een vliegtuig met ambulance faciliteiten opgehaald om in de VS behandeld te worden.
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Marsei
Scientists explain about-face on MS trials
Scientists explain about-face on MS trials
Scientists explain about-face on [URL="http://www.thestar.com/news/canada/poli ... -ms-trials"][U]MS trials[/U][/URL]
[QUOTE]The scientists who advised the federal government to go ahead with clinical trials for a controversial new treatment for multiple sclerosis say it was new evidence — not public pressure — that changed their minds.[/QUOTE]
[QUOTE]Dr. Aaron Field, an associate professor of neuro-radiology at the University of Wisconsin, said a “key factor” in the decision was a meta-analysis of the research published so far, including a recent study by a Zamboni ally at the University of Buffalo that made headlines by suggesting CCSVI was a result, not a cause, of MS. The analysis took into account factors such as the number of subjects in research studies, and whether they used proper blinds and control groups.[/QUOTE]
[QUOTE]Field said he went into the meeting with an open mind but was still surprised by what he learned.
“I sort of thought that once somebody looked at all the studies, there would probably be nothing there. So once I saw that, that sort of reassured me that we’re not all wasting our time and this really does need to be pursued,” said Field, who added that if the seven ongoing diagnostic studies tip the balance the other way, he would advocate against continuing the trials.[/QUOTE]
Scientists explain about-face on [URL="http://www.thestar.com/news/canada/poli ... -ms-trials"][U]MS trials[/U][/URL]
[QUOTE]The scientists who advised the federal government to go ahead with clinical trials for a controversial new treatment for multiple sclerosis say it was new evidence — not public pressure — that changed their minds.[/QUOTE]
[QUOTE]Dr. Aaron Field, an associate professor of neuro-radiology at the University of Wisconsin, said a “key factor” in the decision was a meta-analysis of the research published so far, including a recent study by a Zamboni ally at the University of Buffalo that made headlines by suggesting CCSVI was a result, not a cause, of MS. The analysis took into account factors such as the number of subjects in research studies, and whether they used proper blinds and control groups.[/QUOTE]
[QUOTE]Field said he went into the meeting with an open mind but was still surprised by what he learned.
“I sort of thought that once somebody looked at all the studies, there would probably be nothing there. So once I saw that, that sort of reassured me that we’re not all wasting our time and this really does need to be pursued,” said Field, who added that if the seven ongoing diagnostic studies tip the balance the other way, he would advocate against continuing the trials.[/QUOTE]
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Marsei
The Montreal Gazette
The Montreal Gazette
[URL="http://www.montrealgazette.com/health/O ... story.html"][U]The Montreal Gazette[/U][/URL]: Ottawa to fund clinical trials of controversial MS treatment
[QUOTE]There’s been little improvement seen in MS patients who flocked abroad to private clinics for the angioplasty surgery, and most suffered new obstructions and returned twice, even five times, said Marc Girard, head of the Quebec Association of Neurologists.
“The results are not there,” Girard said. “One year later, we have more questions than answers.”[/QUOTE]
[QUOTE]Dr. Girard said he’s not aware of the data that the committee says supports the surgery.
“But we have seen lots of patients who were treated and who returned because of blocked veins. Those people you don’t see on TV,” Girard said. “We saw 40 patients who had it and we didn’t see miraculous results.”
Some patients had little improvement while others reported that benefits vanished within two weeks to three months, he added.[/QUOTE]
Treurig :moe:
[URL="http://www.montrealgazette.com/health/O ... story.html"][U]The Montreal Gazette[/U][/URL]: Ottawa to fund clinical trials of controversial MS treatment
[QUOTE]There’s been little improvement seen in MS patients who flocked abroad to private clinics for the angioplasty surgery, and most suffered new obstructions and returned twice, even five times, said Marc Girard, head of the Quebec Association of Neurologists.
“The results are not there,” Girard said. “One year later, we have more questions than answers.”[/QUOTE]
[QUOTE]Dr. Girard said he’s not aware of the data that the committee says supports the surgery.
“But we have seen lots of patients who were treated and who returned because of blocked veins. Those people you don’t see on TV,” Girard said. “We saw 40 patients who had it and we didn’t see miraculous results.”
Some patients had little improvement while others reported that benefits vanished within two weeks to three months, he added.[/QUOTE]
Treurig :moe:
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Marsei
Marie - Studies !
Marie - Studies !
Notitie van Marie op [URL="https://www.facebook.com/notes/ccsvi-in ... 8518412211"][U]FB[/U][/URL]: Studies !
[QUOTE]On the other hand, CCSVI appears to be a chronic developmental issue and the body compensates with collateral circulation and other methods to cope with the low oxygen state CCSVI creates. Yes the blood flow is slow, but the blood does get through. So it isn't as obvious to an objective observer that the slower blood flow is a problem--you can't take a reading of the pressure in the head of a CCSVI patient like you can in APS and find a gross increase, nor is the CCSVI person slipping in and out of consciousness etc. Therefore the traditional way of saying "Oh yes this is a big problem" is not there.
That doesn't mean it isn't a big problem! Joan has written eloquently about how low oxygen may be the originator of damage to astrocytes, oligodendrocytes and other structures in the MS brain. This takes what is known about venous insufficiency of the legs and postulates how similar insufficiency would impact structures and cells in the brain. It can be thought of as a slow motion disaster for the brain (as opposed to that dramatic APS blockage). But that is still a theory.
So that means we have to prove that these less-than-complete-blockages matter in their own right even though doctors can't see the problem the same way they can with a severe clot.
We are on our way to this though. Dr Hubbard's BOLD work has shown that MSers before CCSVI treatment show abnormally poor oxygenation when trying to do a mental task. Since the normal readings are already known, this means there is no question about these people with MS demonstrating poor oxygenation in their brains in the BOLD test. This also is in keeping with older MS research--MSers have poor oxygen perfusion in the brain, and that is well known. So everyone agrees--poor oxygenation MS brains.
But Dr Hubbard's BOLD work showed that these oxygen levels improved markedly after an MSer has a CCSVI procedure.
This is kind of shocking to MS specialists because if you can fix it with a procedure and never do ANYTHING to the immune system to stop inflammation then it is not inflammation that caused the poor oxygenation as MS experts had thought. it shows that a completely objective test demonstrates differences in oxygen levels before and after treatment.
It is this kind of research that is going to win the day.
One can only HOPE that the new studies being proposed to investigate CCSVI offer other clear, objective work such as this. Let's hope no one tries to do a double blind trial without experience in evaluating and treating CCSVI, and let's hope the people who are deciding which studies to fund, actually fund studies that fairly evaluate the CCSVI model--not ones that are de facto evaluations of whether the inexperienced IR can do even the treatment successfully!
But we have the BRAVE dreams study coming on line as well as more and ongoing data coming from the Hubbard's IRB, studies on animals with blocked veins, and other unique ways of evaluating CCSVI (Like Dr Simka's OCT study) that shed light on different aspects of CCSVI.
Things are moving, and in reality this is lightning speed for new science. We're doing well. Keep supporting research.[/QUOTE]
Notitie van Marie op [URL="https://www.facebook.com/notes/ccsvi-in ... 8518412211"][U]FB[/U][/URL]: Studies !
[QUOTE]On the other hand, CCSVI appears to be a chronic developmental issue and the body compensates with collateral circulation and other methods to cope with the low oxygen state CCSVI creates. Yes the blood flow is slow, but the blood does get through. So it isn't as obvious to an objective observer that the slower blood flow is a problem--you can't take a reading of the pressure in the head of a CCSVI patient like you can in APS and find a gross increase, nor is the CCSVI person slipping in and out of consciousness etc. Therefore the traditional way of saying "Oh yes this is a big problem" is not there.
That doesn't mean it isn't a big problem! Joan has written eloquently about how low oxygen may be the originator of damage to astrocytes, oligodendrocytes and other structures in the MS brain. This takes what is known about venous insufficiency of the legs and postulates how similar insufficiency would impact structures and cells in the brain. It can be thought of as a slow motion disaster for the brain (as opposed to that dramatic APS blockage). But that is still a theory.
So that means we have to prove that these less-than-complete-blockages matter in their own right even though doctors can't see the problem the same way they can with a severe clot.
We are on our way to this though. Dr Hubbard's BOLD work has shown that MSers before CCSVI treatment show abnormally poor oxygenation when trying to do a mental task. Since the normal readings are already known, this means there is no question about these people with MS demonstrating poor oxygenation in their brains in the BOLD test. This also is in keeping with older MS research--MSers have poor oxygen perfusion in the brain, and that is well known. So everyone agrees--poor oxygenation MS brains.
But Dr Hubbard's BOLD work showed that these oxygen levels improved markedly after an MSer has a CCSVI procedure.
This is kind of shocking to MS specialists because if you can fix it with a procedure and never do ANYTHING to the immune system to stop inflammation then it is not inflammation that caused the poor oxygenation as MS experts had thought. it shows that a completely objective test demonstrates differences in oxygen levels before and after treatment.
It is this kind of research that is going to win the day.
One can only HOPE that the new studies being proposed to investigate CCSVI offer other clear, objective work such as this. Let's hope no one tries to do a double blind trial without experience in evaluating and treating CCSVI, and let's hope the people who are deciding which studies to fund, actually fund studies that fairly evaluate the CCSVI model--not ones that are de facto evaluations of whether the inexperienced IR can do even the treatment successfully!
But we have the BRAVE dreams study coming on line as well as more and ongoing data coming from the Hubbard's IRB, studies on animals with blocked veins, and other unique ways of evaluating CCSVI (Like Dr Simka's OCT study) that shed light on different aspects of CCSVI.
Things are moving, and in reality this is lightning speed for new science. We're doing well. Keep supporting research.[/QUOTE]