Wednesday, October 6, 2010

Who is selling snake oil?

It is too soon to tell how treatment of CCSVI will affect MS patients over the long term, but here is Joan Beal's rebuttal (on the CCSVI in MS Facebook site) to those who are characterizing CCSVI treatment a "just more snake oil":

We're seeing many neurologists and MS specialists responding to CCSVI research reflexively.  The common attack is
"This CCSVI angioplasty is no different than bee stings!  It is simply snake oil."
I think it's important for patients and caregivers to understand history when trying to respond to this claim.  You know me and history....(Rindfliesch, Putnam, Swank...)  I LOVE history.
The term snake oil comes from the late 19th and early 20th century in the US, when you could actually purchase real snake oil to help your health.  Snake oil was claimed to have many healing properties and was sold by traveling salesmen, who put on shows with feverish sales pitches, hystercial claims, and miraculous healings which rivaled religious rivival meetings.  But these products didn't really do much for one's health, and soon the public caught on to the quackery and the term snake oil became associated with false medical claims.
When Dr. Zamboni discovered Chronic Cerebrospinal Venous Insufficiency (CCSVI)  he actually discovered a new disease.  Other researchers were noting how jugular vein valve malfunctions were related to transient global amnesia and hypoxia, but he found a connection to MS.   He came across this discovery quite by accident, while trying out new ultrasound equipment and scanning the neck of an MS patient--he noted venous reflux.  Something that was not normal, and had not been detected before.  He spent the next five years conducting blinded studies, writing research, bringing other doctors on board and learning all he could about this disease mechanism. He tried to address the blockages he found only in MS patients' veins with angioplasty.  It helped his patients.  And then he published his research, and I read it--along with patients, caretakers and doctors around the globe.
Angioplasty to relieve CCSVI is not a product.  It is not sold as a cure.  It is not quackery.  Angioplasty is used to relieve venous congestion and stenosis in many known diseases, including Budd-Chiari, heart disease, kidney disease and jugular insufficiency in dialysis patients.
Maybe we want to turn the question around to these doctors-- what is snake oil?   A product that makes unsubstantiated claims to heal, without a known mechanism.   I suggest that they themselves are the snake oil salesmen---telling their patients to take disease modifying drugs while they admit the cause of MS is STILL UNKNOWN.  Perhaps the CRABS are the snake oil?
In any event---over the years there have been procedures and treatments used to relieve MS symptoms and many have been touted as curative and called snake oil--they are not cures, BUT they have helped pwMS achieve symptom relief.  
What do bee stings, hyperbaric oxygen treatment and many other "alternative" treatments have in common?  They all address the VASCULAR SYSTEM.  Bee stings are vasodilators (via histamine release) and help blood travel throughout the body.  Venom from scorpions and other animals also does the same, and has been linked to relief in pwMS by many scientists.  Hyperbaric oxygen is easy to understand within the CCSVI is delivering much needed oxygen to a brain that is suffering from diffuse cerebral hypoxia.  Diet has long been touted as a relief for MS symptoms.  in fact Dr. Roy Swank completed many studies that were never deemed "acceptable" to the MS researchers.  But he showed long term remission in his MS patients, using diet and good nutrition alone.  I believe the connection to all of the above is found in the endothelium, the lining of our blood vessels.  You can check out my research on endothelial health at under "helping myself."
So, when a doctor uses the snake oil phrase to describe Dr. Zamboni's research...ask he or she if they understand the irony of that comment.  
Who is selling the snake oil....really?

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