What has changed?
Posted: Fri Jul 19, 2013 12:16 pm
What has changed?
20 July 2013 at 06:24
In the four years since this page was started, there have been many profound changes in mainstream MS treatment and research. The connection to the vascular system is real for many, and is being dealt with in a "sideways" manner by neurologists. I do not expect we will hear that CCSVI is valid from neurology--they will attempt to rename it, requantify slowed venous return, and make it their own. And they will create drugs to modify it. link
But the facts remain:
1. People with MS have less cerebral blood flow than normal people. Their blood flow exits the brain at a slower rate. Researchers are looking at drug therapies to address this fact, but it is no longer an item of debate. Hypoperfusion is real, and it damages the brain. Whether it is a cause or effect of MS will be debated for decades.
link
2. People with MS do better with exposure to UV rays. It relieves symptoms in many. It is thought this might be due to vitamin D levels, but it might also be due to how UV rays release nitric oxide and change the endothelium and blood flow.
link
3. People with MS are being advised to look into their nutrition and to eat more fruits, vegetables and whole foods and less animal fats and processed foods. When Dr. Swank suggested this 60 years ago, it was called "junk science." It is now given as helpful advice by the NMSS and the AAN. Same thing with exercise. Only a decade ago, pwMS were told to not exert themselves. Now we know that physical exercise and activity delays progression. Same thing with smoking cessation, stress reduction, and better sleep. All of these cardiovascular lifestyle changes can make a difference.
link
4. Oxidative stress and inflammation are recognized as driving forces in MS progression. This has lead to exploratons of new modalities of treatment, like the Nrf2 pathway.
link
5. Gray matter health has been recognized as a more accurate biomarker of MS progression than white matter lesions. Gray matter atrophy will become the new target for MS therapies.
link
6. PwMS have much higher levels of fibrin and endothelin-1 in their serum than normals. These are markers of endothelial dysfunction.
link
7. Upright MRI has allowed us to see how cerebrospinal fluid and blood return to the heart is slowed and impeded in pwMS.
link
8. CCSVI is being explored around the globe. There are literally hundreds of papers published in vascular and neurological journals. New papers come to press every day. Not many utilize Dr. Zamboni's diagnostic protocol, but those that do are finding CCSVI in pwMS.
link
All of this is new. And it has happened in just the past four years.
+++++++++++++++++++++++++++++
For those of us waiting for venoplasty to be accepted as an MS treatment, we have to step back and view the other changes that have happened in MS care.
The American Academy of Neurologists has several papers featured on their page which connect slowed blood flow and neurodegenerative disease. They have a patient outreach branch--The American Brain Foundation-- and they have a yearly Brain Fair to discuss diet and lifestyle changes people with neurodegenerative diseases, including MS, should consider. So much for Dr. Swank's junk science.
But most importantly, all of our lives have changed. For those who did not receive lasting benefit from venoplasty to address CCSVI--many have moved on to look at other therapies and modalities for treatment of their disease. For those who have done well with this vascular approach, life has gone on.
I'm in that fortunate position now. Jeff is doing quite well-- he is working, up and active, with no further MS progression. His gray matter atrophy is gone. Our son is off to college, and we find ourselves in a new phase of life. I've curtailed my online and advocacy time to rediscover my career, my other pursuits, friendships, travel, and to be present in my own life.
When reporters, scientists, neurologists, MS specialists and others say--"Oh, the connection of CCSVI to MS, that's simply junk science"---tell them about Dr. Roy Swank. Remember how long it took his observations of "capillary fragility", slowed blood flow, and hypercoagulation to be accepted as part of MS. He was noting endothelial dysfunction decades before scientists knew about nitric oxide and how environmental factors contributed to blood flow. And he has never once been credited by mainstream neurology. You won't see his name or read his research in their journals. But he was right.
++++++++++++++++++++++++++++++
Here's a wonderful video Christopher A. found on Dr. Swank's work. It was made in 1989 as part of a Canadian news investigation into the success of Dr. Swank's diet in pwMS. If you haven't seen it, it's a must watch. Because today, 25 years later, the NMSS is making these very same dietary and lifestyle recomendations to pwMS.
Dr. Zamboni's discovery of CCSVI is in the same category. He has revolutionized how we look at cerebral blood flow, by studying the under-researched extracranial venous system. He is decades ahead of his time. His discovery of CCSVI may be the other part of the equation on slowed venous return and endothelial dysfunction in pwMS. To say that it is junk science, and that there is no connection in venous return in MS, is to negate scientific fact.
Joan
20 July 2013 at 06:24
In the four years since this page was started, there have been many profound changes in mainstream MS treatment and research. The connection to the vascular system is real for many, and is being dealt with in a "sideways" manner by neurologists. I do not expect we will hear that CCSVI is valid from neurology--they will attempt to rename it, requantify slowed venous return, and make it their own. And they will create drugs to modify it. link
But the facts remain:
1. People with MS have less cerebral blood flow than normal people. Their blood flow exits the brain at a slower rate. Researchers are looking at drug therapies to address this fact, but it is no longer an item of debate. Hypoperfusion is real, and it damages the brain. Whether it is a cause or effect of MS will be debated for decades.
link
2. People with MS do better with exposure to UV rays. It relieves symptoms in many. It is thought this might be due to vitamin D levels, but it might also be due to how UV rays release nitric oxide and change the endothelium and blood flow.
link
3. People with MS are being advised to look into their nutrition and to eat more fruits, vegetables and whole foods and less animal fats and processed foods. When Dr. Swank suggested this 60 years ago, it was called "junk science." It is now given as helpful advice by the NMSS and the AAN. Same thing with exercise. Only a decade ago, pwMS were told to not exert themselves. Now we know that physical exercise and activity delays progression. Same thing with smoking cessation, stress reduction, and better sleep. All of these cardiovascular lifestyle changes can make a difference.
link
4. Oxidative stress and inflammation are recognized as driving forces in MS progression. This has lead to exploratons of new modalities of treatment, like the Nrf2 pathway.
link
5. Gray matter health has been recognized as a more accurate biomarker of MS progression than white matter lesions. Gray matter atrophy will become the new target for MS therapies.
link
6. PwMS have much higher levels of fibrin and endothelin-1 in their serum than normals. These are markers of endothelial dysfunction.
link
7. Upright MRI has allowed us to see how cerebrospinal fluid and blood return to the heart is slowed and impeded in pwMS.
link
8. CCSVI is being explored around the globe. There are literally hundreds of papers published in vascular and neurological journals. New papers come to press every day. Not many utilize Dr. Zamboni's diagnostic protocol, but those that do are finding CCSVI in pwMS.
link
All of this is new. And it has happened in just the past four years.
+++++++++++++++++++++++++++++
For those of us waiting for venoplasty to be accepted as an MS treatment, we have to step back and view the other changes that have happened in MS care.
The American Academy of Neurologists has several papers featured on their page which connect slowed blood flow and neurodegenerative disease. They have a patient outreach branch--The American Brain Foundation-- and they have a yearly Brain Fair to discuss diet and lifestyle changes people with neurodegenerative diseases, including MS, should consider. So much for Dr. Swank's junk science.
But most importantly, all of our lives have changed. For those who did not receive lasting benefit from venoplasty to address CCSVI--many have moved on to look at other therapies and modalities for treatment of their disease. For those who have done well with this vascular approach, life has gone on.
I'm in that fortunate position now. Jeff is doing quite well-- he is working, up and active, with no further MS progression. His gray matter atrophy is gone. Our son is off to college, and we find ourselves in a new phase of life. I've curtailed my online and advocacy time to rediscover my career, my other pursuits, friendships, travel, and to be present in my own life.
When reporters, scientists, neurologists, MS specialists and others say--"Oh, the connection of CCSVI to MS, that's simply junk science"---tell them about Dr. Roy Swank. Remember how long it took his observations of "capillary fragility", slowed blood flow, and hypercoagulation to be accepted as part of MS. He was noting endothelial dysfunction decades before scientists knew about nitric oxide and how environmental factors contributed to blood flow. And he has never once been credited by mainstream neurology. You won't see his name or read his research in their journals. But he was right.
++++++++++++++++++++++++++++++
Here's a wonderful video Christopher A. found on Dr. Swank's work. It was made in 1989 as part of a Canadian news investigation into the success of Dr. Swank's diet in pwMS. If you haven't seen it, it's a must watch. Because today, 25 years later, the NMSS is making these very same dietary and lifestyle recomendations to pwMS.
Dr. Zamboni's discovery of CCSVI is in the same category. He has revolutionized how we look at cerebral blood flow, by studying the under-researched extracranial venous system. He is decades ahead of his time. His discovery of CCSVI may be the other part of the equation on slowed venous return and endothelial dysfunction in pwMS. To say that it is junk science, and that there is no connection in venous return in MS, is to negate scientific fact.
Joan
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