Tuesday, January 18, 2011

Why Do We Need Clinical Trials For CCSVI?

Am I the only one having a problem with this?

Clinical trials are designed to test the effectiveness and safety of pharmaceutical products. It also serves as a great way to make a lot of people a lot of money. The cost to bring a drug to market through trials range to about $100 million. When you are a patient in a clinical trial, you essentially give up your rights as you are taking these drugs at your own risk. If you die.. the only outcome is that the drug "might" be considered unsafe. It doesn't mean it won't go to market, it just means they may have to add a couple more warnings to the label.

As a patient in a clinical trial you become nothing more than a guinea pig for a pharmaceutical company. The only difference, you have to go home and feed yourself, while the actual lab animals used for testing get to be fed by their handlers.

Clinical trials for surgical procedures to be allowed is unheard of. How many patients went through clinical trials for heart transplants before other patients were allowed to get new hearts to be able to live? Where are the results of these studies? I can't find them. Nor can I find any results for clinical trials for angioplasty, any transplants, venoplasty for diabetics, appendectomies or even tonsillectomies. It is unheard of for a surgeon to need a clinical trial to do an operation to save someones life.

So my bigger question would be, "Who is the stupid ass that even mentioned the words 'Clinical Trail' for CCSVI?

The CCSVI procedure is the same procedure used in hospitals around the world every day. A wide range of patients need and receive the simple angioplasty procedure. The same procedure that I had done in my jugular and azygos veins. And I lived. Actually, I got much better. I never got cured and I never got fixed. I got better.

The world runs on greed. It is a sad fact and a lot of us refuse to admit it. But it's true. It is no secret that MS is big business. A life long incurable disease that causes major suffering. A pharmaceutical companies dream. An endless supply of guinea pigs. It is no secret that the Neurological Societies of the world have taken the medical world by the throat displaying some of the most outrages God complexes ever seen. It is also no secret that the CCSVI information came out just before the clinical trials for several oral MS medications were to be released.

For MS patients, Disease Modifying Drugs (DMD's) such as Rebif, Avonex and all the others need to be injected. A major complaint for these patients is adverse reactions like flu symptoms to injection site issues such as scarring. After about 20 years of complaining, the pharmaceutical companies started to develop the same poisons in a pill form. These are the kind of drugs that cost a $100 million to run trials on. The cost of these drugs are no different than the cost for the injectables and in some cases they are more expensive. The payout for these drugs will exceed $ trillions. Or so they thought.

Then along comes a vascular surgeon in Italy who was tired of seeing his wife suffer from this disease. I have no doubt that he read the theories about MS possibly being a vascular condition. They have been around for almost 130 years. Even German Neurologists suspected this, but had no way to prove it. Until Dr.Zamboni comes along thinking outside the box. He found a way to image it so it could be seen. Though not yet perfect, major obstructions/constrictions can be seen. He showed he could see blood not properly draining from the brain due to anomalies to the veins returning blood back to the heart. Then he figured out a way to correct them. And it worked.

Since then, literally thousands of MS patients have had this procedure done. There have been very few complications. Although a couple have actually died and that could be upsetting, until you see the results of what killed them. They died because their doctors at home refused to treat them because they had a simple angioplasty procedure. So it wasn't the procedure that killed them, it was their own greedy doctors that did it. Regardless, this procedure has killed a lot less than heart transplants did until they got that right. The procedure is safe, it's our politicians and greedy doctors that are trying to kill us.

The Clinical Trial for CCSVI is a cash grab. Researchers will make a ton of money in grants. The researchers that are running these trials for the most part are running them to prove they don't work. This could be a stall tactic to allow time to generate more revenue for the losses about to be incurred. It could also be designed to fail from the beginning. There is no way that a DMD would go to market if the facts were presented honestly. A trail that shows 30% may have had some improvement  looks a lot better than the 70% of patients experiencing no change/worsening/dieing of disease/drug. So it is easy to leave out the 70% who got worse or died. Regardless, it is still greed driven.

But the greed doesn't stop there. Now MS patients are flying all over the world and paying upwards to $25,000 for a simple procedure that could be done at home for less than $5000. And $5000 is being very generous as the cost in Canada is closer to $2500. Patients are also finding out that some of these clinics doing these procedures are not all the end all to be all. Some find they are paying $15,000 to only have one side done then need to return in a couple months with another $15,000 to get the other side done. Medical Tourism has always been a great cash cow. Now they get to add MS to their portfolios.

I did find one Clinical Trial for a surgical procedure. It was actually done the same way that we as patients are asking for. They didn't take a bunch of patients and controls run them a bunch of tests on them. They went to the patients that had the procedure done. Then they used the data to find the BEST surgical procedure to achieve the BEST results. The results were, no change regardless of the procedure method and the surgical condition was Carpal Tunnel Syndrome.

There are literally thousands of MS patients worldwide that have had this procedure done. They are all screaming to be heard that this works so others don't have to suffer. Their doctors and politicians refuse to listen. We as patients know this works. We also know it is not a cure and we still need help. But our doctors refuse to listen to that also.


  1. I CONCUR. It was probably put forward by any one (or all) of the unscrupulous characters that stand to lose out once it is gratuitously accepted as gives benefit, WHERE NOTHING ELSE WILL.

  2. Right On Marcel.......once again you hilite many good points I have asked myself! Drug companies getting rich off sick people! Keep the logic coming! PS: Love they just add a few more warning labels ;)

  3. I agree with you Marcel.

    Delaying the right to access is this country for MSers to receive Angioplasty because it is dangerous doesn't fly and we are all coming to realize this. Prolonging the delay to access in Canada is criminal as far as I am concerned.

    Just give me the right and you will spare my wrath. This issue is not going away. Time the powers that be realize this and correct the situation ASAP.

  4. Well said Marcel!

    I am in a clinical trial for CCSVI. Had the Doppler in August as the first part of the study. Apparently they found what they were looking for and as a result they have been treating people with ms [with the angioplasty] since October and I am not seeing the 'double blinded' study mentioned anywhere. It appears that they are interested in helping people. As for the heart transplants, they were not double blinded either.

    I let the greedy be greedy, expose their schemes and let the one who created all be the judge and jury. They are His responsibility and He can and will be the only voice that matters.

    I, like you my friend simply wish to help people be helped. I do hope my thinking becomes clearer after the blockages are removed.

  5. You are So Right, Marcel-! I had a CCSVI treatment & will have another one again SOON! It does MORE for my MS symptoms than any Disease-Modifying Drug Ever Did!