CCSVI - 9
Alleen naar 'veiligheid' van een behandeling kijken, zonder naar de effectiviteit lijkt me niet zo heel zinvol. De uitspraak van die neuroloog dus ook niet zo heel opzienbarend.
Voor zover ik op de hoogte ben is de effectiviteit van tysabri (dat wordt bedoeld, neem ik aan), beter bewezen dan die van de CCSVI-behandeling.
Voor zover ik op de hoogte ben is de effectiviteit van tysabri (dat wordt bedoeld, neem ik aan), beter bewezen dan die van de CCSVI-behandeling.
Nou nou nou, als we daar ook even de placebo-effecten wegfilteren...?
Liever 3 keer ccsvi (ik heb placebo-effecten mogen ervaren) dan een korte of lange kuur met een van de gebruikelijke medicijnen.
Scheelt de gemeenschap nog een bak geld ook (zeker zolang ccsvi uit de eigen zak mag worden betaald).
Liever 3 keer ccsvi (ik heb placebo-effecten mogen ervaren) dan een korte of lange kuur met een van de gebruikelijke medicijnen.
Scheelt de gemeenschap nog een bak geld ook (zeker zolang ccsvi uit de eigen zak mag worden betaald).
[QUOTE=Sara;832832]Alleen naar 'veiligheid' van een behandeling kijken, zonder naar de effectiviteit lijkt me niet zo heel zinvol. De uitspraak van die neuroloog dus ook niet zo heel opzienbarend.
Voor zover ik op de hoogte ben is de effectiviteit van tysabri (dat wordt bedoeld, neem ik aan), beter bewezen dan die van de CCSVI-behandeling.[/QUOTE]
Het gaat om uitspraken van neurologen dat de CCSVI-behandeling zo verschrikkelijk gevaarlijk is.
Voor zover ik op de hoogte ben is de effectiviteit van tysabri (dat wordt bedoeld, neem ik aan), beter bewezen dan die van de CCSVI-behandeling.[/QUOTE]
Het gaat om uitspraken van neurologen dat de CCSVI-behandeling zo verschrikkelijk gevaarlijk is.
Isnvd conferentie
Isnvd conferentie
Van Joan op [URL="https://www.facebook.com/pages/CCSVI-in ... 0796282297"][U]FB[/U][/URL]: [QUOTE]From reports by Dr. Burks and Dr. Dake at isnvd we've learned the true problem. It' s a Catch 22. Neurologists require placebo controlled trials of venoplasty for ccsvi, yet refuse to participate in approving irbs. How will vascular doctors get these trials going without cooperation? And is this merely a ploy to make ccsvi research "go away"?[/QUOTE]
[QUOTE]Only the one with blinding (at bnac) is considered acceptable to neuros. They still refuse to participate in dr dakes irb process. They continue to be intransigent.[/QUOTE]
[QUOTE]They can continue to use snake oil and UFO language to negate the validity of this science. It's been 3 years since Jeff was patient 1 and marie was patient 2 in the us. This has become absurd. Dr dake should have his study underway by now i am very angry.[/QUOTE]
Van Joan op [URL="https://www.facebook.com/pages/CCSVI-in ... 0796282297"][U]FB[/U][/URL]: [QUOTE]From reports by Dr. Burks and Dr. Dake at isnvd we've learned the true problem. It' s a Catch 22. Neurologists require placebo controlled trials of venoplasty for ccsvi, yet refuse to participate in approving irbs. How will vascular doctors get these trials going without cooperation? And is this merely a ploy to make ccsvi research "go away"?[/QUOTE]
[QUOTE]Only the one with blinding (at bnac) is considered acceptable to neuros. They still refuse to participate in dr dakes irb process. They continue to be intransigent.[/QUOTE]
[QUOTE]They can continue to use snake oil and UFO language to negate the validity of this science. It's been 3 years since Jeff was patient 1 and marie was patient 2 in the us. This has become absurd. Dr dake should have his study underway by now i am very angry.[/QUOTE]
Isnvd conferentie: Dr. Benson
Isnvd conferentie: Dr. Benson
CNS Neurologist to Present at International [URL="http://www.prweb.com/releases/2012/2/prweb9206099.htm"][U]Conference[/U][/URL] on Neurovascular Disease
[QUOTE]Dr. Benson’s presentation will center on the role blood flow to the brain may impact such diseases as Multiple Sclerosis.[/QUOTE]
CNS Neurologist to Present at International [URL="http://www.prweb.com/releases/2012/2/prweb9206099.htm"][U]Conference[/U][/URL] on Neurovascular Disease
[QUOTE]Dr. Benson’s presentation will center on the role blood flow to the brain may impact such diseases as Multiple Sclerosis.[/QUOTE]
Dr. Jack Burks talks about CCSVI at ISNVD Meeting
Dr. Jack Burks talks about CCSVI at ISNVD Meeting
[URL="http://soundcloud.com/ccsvi-toronto/dr-burks-at-isnvd"][U]Dr. Jack Burks [/U][/URL]talks about CCSVI at ISNVD Meeting
[URL="http://soundcloud.com/ccsvi-toronto/dr-burks-at-isnvd"][U]Dr. Jack Burks [/U][/URL]talks about CCSVI at ISNVD Meeting
ISNVD Patient day 18th February 2012 Orlando
ISNVD Patient day 18th February 2012 Orlando
[URL="https://www.facebook.com/notes/ms-ccsvi ... 0389560713"][U]ISNVD Patient day[/U][/URL] 18th February 2012 Orlando
- The day started well with a presentation from [B]Zivadinov[/B] who remarked on the connections between EBV, low Vit D, CCSVI, Crohn’s disease and Multiple Sclerosis symptoms. He repeated his opinions that CCSVI was a result of MS rather than a contributory factor to it.
- Next we had the pleasure of a history lesson from [B]Zamboni[/B] telling us the sequence that led him to investigate and identify CCSVI. In 1822 Augustus Hannover, Duke of Este and a relative of the British Royal Family was the first sufferer to describe the syndrome before it was identified. Zamboni also explained how Franz Schelling found him through the internet.
In 2002 he found a few MS patients he could examine with duplex. He found reflux, for three years he just investigated and noted abnormalities in about 55% of people with MS and none in his students who were the control group. He discovered through some post mortem studies of MS patients many problems remarking that the stenoses were not due to compression but due to malformations.
He proposed at the Royal Society of Medicine a parallel between vascular disease in the leg and the brain. MS is a complex disease and it needs a variety of diagnostic techniques.
He treated the first case in December 2006, the procedure was carried out by Dr. Galeotti, a vascular surgeon. In 2007 he put together the first CCSVI team, including Dr Salvi, a neurologist, and Dr Galeotti. Later he met Dr Dake at the Charing Cross vascular symposium.
Dr Zamboni thinks that chronic fatigue could be the biggest symptom of CCSVI.
- The next speakers were [B]Mark Haacke[/B] and [B]Angela Lagaste[/B] who spoke about their diagnostic specialisms. Angela said that the training of sonographers was of utmost importance. Detecting the subtleties of CCSVI is not easy and depends on the way in which the probe is handled.
- Treatment and Outcomes ([B]Gerald A. Niedzwiecki[/B]). He described his facility and talked about the need for evidence of effectiveness. There was good evidence of safety of the procedure but ended his presentation with these words: “The question we should be asking are we making a difference in patient’s symptoms short term and long term.”
- Treatment and Follow-up ([B]J. Joseph Hewett[/B], USA). He talked about the need for data when carrying out treatment, so don’t just treat but measure before and after.
- [B]Bill Code[/B] thought that reduced blood flow was the main problem in CCSVI – due to problems in the anatomy, low blood pressure, stroke, thickened blood. He went on to describe the reasons why people may have thickened blood.
- “It's all about the valves” PRO ([B]Michael Arata[/B], USA) / [B]CON[/B] ([B]Bulent Arslan[/B], USA)
The debate about whether the Valves were at the bottom of every case of CCSVI. Mike Arrata identified four categories of CCSVI:
Valvular CCSVI most common (good results)
Restrictive CCSVI patients who don’t have valves (not good results)
Compressive CCSVI (possible treatment)
Inflow CCSVI (very rare but untreatable)
He only operated on the cases with valvular problems. When only valvular treatment is carried out there is no need for retreatment.
Arslan Bulent disagreed and said that other problems within the veins could be treated, not all were due to valvular problems. He identified a couple of cases of vein stenoses that could easily and effective be treated.
A vote was taken and Arslan Bulent argument won the day.
- “Is Ultrasound adequate pre-op evaluation for CCSVI?”
PRO ([B]Eric Feigenbutz[/B], USA) / [B]CON[/B] ([B]Raj Attariwala[/B], CANADA)
They both proffered arguments for their own points of view along the lines of ease of use, validity and cost.
When the vote was taken it came down on the side of the CON, the audience thought that ultrasound on its own was not a good enough diagnostic tool.
- After lunch we heard from a Neurologist [B]Jack Burks[/B] who throughout the afternoon called CCSVI the treatment not the condition… no one drew his attention to this and it kind of summed up the lack of knowledge and understanding that his profession are displaying, During the round table he said that to make any progress with CCSVI (treatment) neurologist and IRs should get together in a room and agree on a protocol and outcomes.
- We also heard from a [B]Dr Dan Simon[/B] about the medication best suited to the management of thrombosis.
- [B]David Hubbard[/B] also spoke of his experience and what the Hubbard Foundation was doing to involve neurologist in the debate, but he had to admit that becoming an advocate for CCSVI had put him into the ‘also ran’ category.
- We next heard from [B]David Williams[/B] about Dental Health and Vascular Healing. He described that stupendous improvements of people with MS he had treated for teeth and haw alignment and described the research he had done on the bones of the head and jaw, sleep problems, teeth clenching, and the problems that resulted from these.
- [B]Charles Woodfield[/B] spoke of Atlas instability and CCSVI: The atlas is the bone that supports the skull on the spinal chord. He spoke of the treatment that chiropractors delivered that straightened this bone in the matter of minutes and had a very positive result on people’s balance and mobility, as well as their improved blood flow.
- Lastly we heard from [B]Kirsty Duncan[/B] MP who we all know is a great advocate for CCSVI treatment in Canada. She went through the events that had led her to the second reading of Bill C280 on the 15th February. Although at the time of the reading a vote was taken which decided that the motion would not be adopted, apparently this is not the final vote which has yet to take place and Kirsty is hopeful that her bill will win through as she is getting a lot of cross party support.
- The last event of the day was a Q&A session, which mostly covered what had already been discussed earlier.
[URL="https://www.facebook.com/notes/ms-ccsvi ... 0389560713"][U]ISNVD Patient day[/U][/URL] 18th February 2012 Orlando
- The day started well with a presentation from [B]Zivadinov[/B] who remarked on the connections between EBV, low Vit D, CCSVI, Crohn’s disease and Multiple Sclerosis symptoms. He repeated his opinions that CCSVI was a result of MS rather than a contributory factor to it.
- Next we had the pleasure of a history lesson from [B]Zamboni[/B] telling us the sequence that led him to investigate and identify CCSVI. In 1822 Augustus Hannover, Duke of Este and a relative of the British Royal Family was the first sufferer to describe the syndrome before it was identified. Zamboni also explained how Franz Schelling found him through the internet.
In 2002 he found a few MS patients he could examine with duplex. He found reflux, for three years he just investigated and noted abnormalities in about 55% of people with MS and none in his students who were the control group. He discovered through some post mortem studies of MS patients many problems remarking that the stenoses were not due to compression but due to malformations.
He proposed at the Royal Society of Medicine a parallel between vascular disease in the leg and the brain. MS is a complex disease and it needs a variety of diagnostic techniques.
He treated the first case in December 2006, the procedure was carried out by Dr. Galeotti, a vascular surgeon. In 2007 he put together the first CCSVI team, including Dr Salvi, a neurologist, and Dr Galeotti. Later he met Dr Dake at the Charing Cross vascular symposium.
Dr Zamboni thinks that chronic fatigue could be the biggest symptom of CCSVI.
- The next speakers were [B]Mark Haacke[/B] and [B]Angela Lagaste[/B] who spoke about their diagnostic specialisms. Angela said that the training of sonographers was of utmost importance. Detecting the subtleties of CCSVI is not easy and depends on the way in which the probe is handled.
- Treatment and Outcomes ([B]Gerald A. Niedzwiecki[/B]). He described his facility and talked about the need for evidence of effectiveness. There was good evidence of safety of the procedure but ended his presentation with these words: “The question we should be asking are we making a difference in patient’s symptoms short term and long term.”
- Treatment and Follow-up ([B]J. Joseph Hewett[/B], USA). He talked about the need for data when carrying out treatment, so don’t just treat but measure before and after.
- [B]Bill Code[/B] thought that reduced blood flow was the main problem in CCSVI – due to problems in the anatomy, low blood pressure, stroke, thickened blood. He went on to describe the reasons why people may have thickened blood.
- “It's all about the valves” PRO ([B]Michael Arata[/B], USA) / [B]CON[/B] ([B]Bulent Arslan[/B], USA)
The debate about whether the Valves were at the bottom of every case of CCSVI. Mike Arrata identified four categories of CCSVI:
Valvular CCSVI most common (good results)
Restrictive CCSVI patients who don’t have valves (not good results)
Compressive CCSVI (possible treatment)
Inflow CCSVI (very rare but untreatable)
He only operated on the cases with valvular problems. When only valvular treatment is carried out there is no need for retreatment.
Arslan Bulent disagreed and said that other problems within the veins could be treated, not all were due to valvular problems. He identified a couple of cases of vein stenoses that could easily and effective be treated.
A vote was taken and Arslan Bulent argument won the day.
- “Is Ultrasound adequate pre-op evaluation for CCSVI?”
PRO ([B]Eric Feigenbutz[/B], USA) / [B]CON[/B] ([B]Raj Attariwala[/B], CANADA)
They both proffered arguments for their own points of view along the lines of ease of use, validity and cost.
When the vote was taken it came down on the side of the CON, the audience thought that ultrasound on its own was not a good enough diagnostic tool.
- After lunch we heard from a Neurologist [B]Jack Burks[/B] who throughout the afternoon called CCSVI the treatment not the condition… no one drew his attention to this and it kind of summed up the lack of knowledge and understanding that his profession are displaying, During the round table he said that to make any progress with CCSVI (treatment) neurologist and IRs should get together in a room and agree on a protocol and outcomes.
- We also heard from a [B]Dr Dan Simon[/B] about the medication best suited to the management of thrombosis.
- [B]David Hubbard[/B] also spoke of his experience and what the Hubbard Foundation was doing to involve neurologist in the debate, but he had to admit that becoming an advocate for CCSVI had put him into the ‘also ran’ category.
- We next heard from [B]David Williams[/B] about Dental Health and Vascular Healing. He described that stupendous improvements of people with MS he had treated for teeth and haw alignment and described the research he had done on the bones of the head and jaw, sleep problems, teeth clenching, and the problems that resulted from these.
- [B]Charles Woodfield[/B] spoke of Atlas instability and CCSVI: The atlas is the bone that supports the skull on the spinal chord. He spoke of the treatment that chiropractors delivered that straightened this bone in the matter of minutes and had a very positive result on people’s balance and mobility, as well as their improved blood flow.
- Lastly we heard from [B]Kirsty Duncan[/B] MP who we all know is a great advocate for CCSVI treatment in Canada. She went through the events that had led her to the second reading of Bill C280 on the 15th February. Although at the time of the reading a vote was taken which decided that the motion would not be adopted, apparently this is not the final vote which has yet to take place and Kirsty is hopeful that her bill will win through as she is getting a lot of cross party support.
- The last event of the day was a Q&A session, which mostly covered what had already been discussed earlier.