Welcome to an online resource for information about the dangers of unapproved human subject experimentation related to testing for, and supposedly treating, a clinically unproven, hypothetical syndrome called chronic cerebro-spinal venous insufficiency (CCSVI).
Here you will find details about CCSVI, the scarcity of any evidence that CCSVI actually exists, and calls from medical experts to ensure that experimental diagnoses and treatments are only conducted under the safeguards of approved clinical trials.
You'll also find information about the experiences of two former patients of Dr. Michael Dake at Stanford University. Lawsuits recently filed by the men allege they were permanently injured when Dr. Dake abandoned fundamentals of patient safety and informed consent, and used risky and experimental procedures to address what he claimed was CCSVI in their veins. These men and their families have brought legal claims to expose the dangers of these unauthorized experiments.
Finally, if you would like to share your personal story about a CCSVI experiment that has caused harm, you may contact us directly.
Chronic cerebro-spinal venous insufficiency (CCSVI) is a term coined to describe a clinically unproven and hypothetical syndrome theoretically linked to multiple sclerosis (MS). According to the CCSVI theory first posed in 2007, MS patients may have irregular narrowing of veins in the head and neck. The hypothesis follows that these vein irregularities (stenoses) do not allow blood to properly drain from the brain, damaging the central nervous system and causing the neurological deficits characterized by MS.
The Italian physician who created the CCSVI theory began experimenting with angioplasty (a process by which a tiny balloon is inflated and then removed) to reportedly open veins and improve blood flow in MS patients. Anecdotal outcomes related to the procedure have been mixed, and no one has been able to successfully replicate the initial "research" which claimed CCSVI's existence.
Despite a lack of credible scientific evidence that attempting to treat purported CCSVI offers any benefit to MS patients, or that CCSVI even exists, it has garnered significant worldwide interest from MS patients hoping it will yield new solutions to relieve their symptoms.
Numerous experts and organizations, including the National Multiple Sclerosis Society, have urged extreme caution in evaluating the theory of CCSVI and its proposed treatment, stressing a randomized clinical trial is needed. Other noted MS and neurology experts also have criticized efforts to treat CCSVI outside of an approved clinical trial. In May of 2012, the U.S. Food and Drug Administration published an explicit warning on the potential dangers of unproven treatment for multiple sclerosis stating "The U.S. Food and Drug Administration is alerting health care professionals and patients about injuries and death associated with the use of an experimental procedure sometimes called 'liberation therapy' or the 'liberation procedure' to treat chronic cerebrospinal venous insufficiency (CCSVI)."