Thursday, December 9, 2010 6:15 PM
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Ken Torbert
CCSVI information MS-CCSVI-UK The Way Forward
Chronic Cerebro-Spinal Venous Insufficiency (CCSVI) is a malfunction of the veins in the neck and chest area. In CCSVI these veins do not drain the blood from the brain adequately. In people with this condition the blood remains in the brain longer than it should, deposits iron in the tissue, causes swelling and cell death resulting in neurological symptoms which have been called Multiple Sclerosis. Multiple Sclerosis (MS) means multiple patches of fibrous interstitial tissue, the process by which this occurs is not fully understood. For the past 40 years research has been concentrating on the auto-immune theory but this had produced no answers. There is long standing evidence to support the original aetiological theory that MS was vascular in origin. This much older evidence (from post mortem studies of the brain) shows that the fibrous tissue is centred around veins. Numerous historical studies have confirmed this theory. * CCSVI has been shown to be congenital but in effect its symptoms are similar to the condition that occurs in Kidney Dialysis patients whose veins collapse due to their treatment. This condition is regularly treated in our hospitals on a daily basis. The procedures used to treat CCSVI are the same as those used to treat Kidney Dialysis patients and carries the same risks. Other venous conditions such as Budd Chiari syndrome and May Thurner Syndrome as well as DVT are similarly investigated and treated. Some people are prevented from having scans to detect CCSVI because they have a diagnosis of MS. People with suspected venous conditions should be investigated whatever their labelled diagnosis is.
BEHIND THE LABEL We are concerned about the irrationality and disparity between the treatment of people with a vascular condition who also have an MS label and the treatment of people with similar vascular conditions but a different label. This is the reason for a possible new direction for us and consequently we are considering removing MS from our name as it may be that these two letters are holding back both thinking and treatment of CCSVI. Although the immune systems is clearly -implicated in the disease, there has so far not been a cogent explanation for its involvement. It is NORMAL for the immune system to go into action in most pathological situations; it is our defense mechanism, but so far no one has been able to explain why it becomes involved. Even the MS Societies acknowledge that ?MS is not fully understood. How can a factor that is not understood be put forward as rational argument for or against anything? Therefore this label must be taken out of the equation, as it leads to a very unbalanced and unfair debate. CCSVI could explain any number of physiological symptoms, but people are told time and time again that; ?'this is just your MS'. This does not weigh up. We, for the most part are not doctors, but our position is simply that we want doctors to refer people for investigation by vascular specialists, as lack of investigation would be clearly irresponsible. The only argument against investigating the vascular theory is the existence of the MS label. There is a lot of emphasis by some quarters on the risks of angioplasty and venoplasty but many other vascular conditions have been receiving such treatment for decades and presumably that risk assessment has long since been done. How can it make sense to deny intervention on the basis that it is too risky when it has already been done on hundreds of thousands of others or conversely how can an intervention be deemed necessary and safe and yet denied anybody on the grounds that it may not be safe. This is contradictory and nonsensical… Perhaps something that needs to be discussed by medical professionals and trust managers.
For more go to: http://www.ms-ccsvi-uk.org/home/files/ms-ccsvi-uk/ccsvi-the-way-forward.pdf
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