When in May 2012 the FDA began to attack Dr Zamboni's "Liberation Therapy" now known as CCSVI, I assumed that the MS community was particularly targeted by Big Pharma to deny any alternate treatment to their drugs... However, now that the entire planet has been the victim of Big Pharma's (read big money) mRNA Covid "Vax" scam, I can see that the suppression of CCSVI treatment for MS is part of the same politic. We can't count on the established medical authorities (FDA, CIC, NIH, NIAID) who have discredited themselves during the Covid 19 crisis.. We can consult FB sItes like the MS Stenosis Society or the Jugular Outflow group in the hope of finding information and therapists who treat vascular and blood flow issues. For starters see the Kathleen Lynch video CCSVI Treatment 101, also CCSVI Alliance.org.on the MS Stenosis Society FB group.
An ongoing registry of CCSVI treaments would guide us in making an independent treatment decision. Tragically the FDA shut down the HUBBARD Foundation CCSVI registry sometime in 2012. (See below"cheerleder"s May 30, 2012 post on ThisisMS)
"Re: FDA Raids Hubbard Foundation.Post by cheerleader » Wed May 30, 2012 4:56 pm
Hi Cureious--
not sure it can be called a "raid"...since they didn't take anything or shut them down. But it sure was a surprise!
from Arlene Hubbard-
Yesterday, the FDA made a surprise visit to one of our sites. They asked to see all of our documentation and will be returning again today. They provided no information on the reason for the visit or why that site was chosen first but did say that they would be doing inspections “all over the country”. The FDA did not shut down the site and as we have posted before we have already applied to the FDA for an exemption. Although the FDA’s primary intent is to prevent “advertising non approved uses for stents and balloons” it is unclear, so far, whether they also will stop research on CCSVI.
"The Hubbard Foundation intends to continue to collect data on adverse events and changes in symptoms related to venoplasty (and ,hopefully, soon in relation to dietary and supplement interventions). An analysis of our first 259 patients has been accepted for publication and our multicenter Registry has collected data on over 400 people so far. We can’t see why the FDA would not want this data to be collected but we’ll keep you posted.
Venoplasty is performed every day in a variety of situations around the globe, and all of these procedures use balloons, catheters and stents in an "off label" manner. (The label refers to the FDA approved usages of a device or drug.) This is because angioplasty was designed for arteries, not veins. Any of these procedures in veins is considered an off label use of devices created for arteries. An this is within the FDA's realm. The reason why the FDA does not get involved in other venous procedures is anyone's guess. But the fact is, they do not. Renal veins are stented for Nutcracker syndrome, and iliac veins are stented for venous insufficiency, and the FDA doesn't say a word.
I think it is naive not to consider the 15 billion a year market in MS drugs. Not that there is a grand conspiracy, but perhaps we need to consider that there is an established business model interested in keeping MS treatments within the immune system paradigm. And power structures will get involved when corporate interests are challenged.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com"
The following quote comes from the ThisIsMs.com website from 1eye July 15, 2012 (under the entry CCSVI, MS
Fatigue, Brain Oxygen) who corrected my original FDA remarks as follows.
"The FDA has not banned patients from seeing doctors or even banned the procedure from being done by a specialist. What it has done is to withhold permission from some randomized prospective trials, that they possibly thought were being done under group and other IRB approvals, without a permission slip called an IDE or Investigational Device Exemption. The IDE allows the trial to be prospective (outcome unknown) when they are using devices such as catheters and stents. What I think that does, is to hinder research, and perpetuate the statement that the use of the catheter or stent on a vein is "Investigational" or experimental,
when the only thing under question is its effect on "MS".These pw"MS" have been saddled with fighting bureaucrats, turf-scared neurologists, the AMA, the CMA, the MS societies, judicial and quasi-judicial organizations, drug vendors, professional associations (the list goes on), to make this procedure a legal
entity for those with "MS", paid for by their paid insurance premiums.The FDA has succeeded in slowing research on the procedure to a snail's pace in the US. But they have not banned, and have no power to ban the procedure itself. Many doctors believe the FDA are acting in the interest of the patient. Unfortunately, nobody speaks for the Patient, without having a financial interest to protect."
The end result is that insurance companies and Medicare are refusing to re-imburse the procedure (which they did before this FDA action) since it is considered "investigational". Doctors refuse the procedure rather than risk legal
consequences. A recent death of a Canadian woman who was forced to go to Mexico to obtain angioplasty and was subsequently refused post-operative care "she so desperately needed" in Canada highlights the negative consequences of this ban. (Canada follows the same policy as the US.) Roxane Garland, age 37, died of an
untreated bladder infection, not CCSVI. The "effective" ban reminds me of the dark ages when abortions were illegal. The medical act itself was not dangerous. Women died because they were forced to go underground. In some way I believe she was punished by her Canadian Doctor for having gone against "established norms, beliefs or paradigms." (See the Semmelweis Reflex) She left a grieving husband and 2 children."
Back to me. Sometime in 2012 the Hubbard CCSVI registry WAS shutdown, a serious loss for me and other MSers who need to know what to hope for (or fear) in undergoing the CCSVI venoplasty. So we can see that the FDA attack on CCSVI treatment for MS in 2012 was a precursor to their attack on appropriate Covid 19 treatment. The Medical regularatory agencies and scientific research have been corrupted by Big Pharma, or, as Klaus Schwab has said "We own the Science".
I am here writing in France where the blackout on Covid 19 is complete.. For instance, the Vidal Group on the internet indulges in the bald faced lie that there is no scientific evidence that early treatment with Ivermectin or Hydroxychloroquine work to treat Covid 19. Maybe they can't read English. I might direct them to FLCCC and Dr Pierre Kory's work on Ivermectin. Or the early May 2023 symposium on Covid organized by the European Parliament.. Or Dr McCoullough's recent speech to the European parliament.
And then in the USA the Democrats keep pushing the Covid "vaccines" in the face of overwhe'lming evidence that they are dangerous. Dr. Naomi Wolf's organization.Daily Clout has revealed through an FOIA request a large e mail release which reveal that American authorities, beginning with the White House, KNEW as of spring 2021 that the mRNA injections are dangerous, even deadly. They knew and rather then take them off the market, they continue to mandate them. Decent Democratic candidates are now operating with that deadly albatross around their necks. (Update Oct 17 2023. It may be Wall Street's sell off of Pfizer stocks heralds awareness of the dangers.)
So let's return again to me and CCSVI. After a friend returned from Poland where she underwent the CCSVI procedure by the renowned Interventional Radiologist MD CCSVI specialist Dr Salvatore Sclafani,. she urged me to consider doing the same. (Since the NY clinic where Dr Sclafani was working feared his CCSVI work would lead to legal complications, he has transferred it to the Polish clinic.) Another friend in California is urging me to look into venoplasty for CCSVI MS, (Both contacted me through this site.) Both experienced impressive recoveries after their first procedures. Unfortuntely this recovery hasn't persisted for various reasons. Blood clots remain a serious complication..
Since I'm convinced my current problem is orthopedic, that the blocked pelvis "twists" my body such that cerebral spinal fluid and blood are unable to flow freely through the central nervous system, I doubt jugular venoplasty will be of much use. (Maybe the lower back area???) And all this because I couldn't obtain osteopathic treatment during the totally unnecessary Covid lockdown.
Tags: CCSVI, Hubbard Foundation, Dr Sclafani, Covid 19, MS Stenosis Society, FB Jugular Outflow group, Dr McCullough, Dr Pierre Kory, FLCCC, Big Pharma, FDA