Friday, September 3, 2010

We Won't Be the Biggest Loser This Time!

September 3, 2010

While the shock and awe in the world of Multiple Sclerosis has started to wind down, the fight continues. There may be a number of PwMS who have not yet heard of CCSVI or the “Liberation Procedure”. Even the name Dr. Zamboni adopted for his discovery has been downgraded to “angioplasty”. In fact when I write about the subject I still have to ping pong a term for “It” around in my mind before I begin to type. Nothing fits quite like “The Liberation Procedure”. Alas, the entire fervor over the matter was instigated by our need to lend credibility to the “cause”. A new era in patient advocacy was born from our efforts to fight for a quality of life, foreign to us, but enjoyed by almost everyone else.

I have given a great deal of thought to the surreal events of the past year. For the first time since Multiple Sclerosis invaded mankind, there is a viable treatment for the symptoms we suffer. The support organizations and groups who were hailed yesterday as heroes in the fight for a cure have shown themselves to be the hypocritical institutions they were all along. Pharmaceutical companies have always been branded as money making machines whose main focus is their bottom line. The list of MS parasites continues to be exposed as their true colors show through. The Liberation Procedure has rooted out the evidence that even among our own there are bottom liners and bottom feeders. Trust has been broken between patients and their neurologists. Members of our support groups and social networks are pitted against each other.

Now that time has gone by and more people are being treated, the doctors are running to play catch up. It is unfortunate that so many people have not realized the improvements they wanted or needed. Those of us who were part of the "First Wave" provided some of the guinea pig material that was needed for the entire process to move forward. I think all of us knew that there would be a trial and error period. This is not yet completed. They and their courageous doctors made it possible for the progress that has occurred, albeit too slowly for our liking.

Months ago, we were cautioned to find our own doctors and remain close to home. All of us couldn’t afford to wait and allow MS to take what little life we had left. Some spent a fortune to go overseas, have the procedure and go home to wait for restenosis. Doctors here are upset about having to do second procedures for people who didn’t seek them out in the first place. That being said, there have been many more successes than failures. Actually doctors here at home are having their share of failures, or unsatisfactory results. The people who cannot wait the projected 5 to 10 tears forged ahead knowing that there were not yet enough doctors qualified to perform the procedure. Some of us took the chance and needed a second procedure. Angioplasty will be an ongoing process until methods and materials improve. Stents will likely need to be part of that equation. So we move two steps forward and one step back. If somebody doesn’t take part in the studies or have the procedure by other means, there will never be enough trained doctors for the ones who have taken the wait and see position. What did we expect? The MS societies and neurologists have joined forces with the drug pushers in order to preserve their monopoly in the care and feeding of PwMS. They are digging in their heels and handing out chump change for unfair scientific studies. We are painted as desperate, impulsive, disabled people who would sell their mothers for a cure. No wonder we had so little respect and credibility in the beginning. It’s no coincidence that tempers flare and anger is raging. As long as we look incompetent and needy, we won’t make that big push to put us over the top.

I’m sure that we are being scrutinized by those who research patient behavior and reactions. They are having a field day with us. It doesn’t take much for a moderator or member of a forum to work people into a frenzy. They stand by and take notes about the havoc that ensues. It also keeps us off focus to continue the efforts to promote the treatment we all know we need. Then we have the Dr. Mark Freedman’s of the world. He’s taken his bloated bank account and moronic behavior on the road to spread more lies and divide more physicians in the process.

It’s true that neurologists treat many other neurological disorders. Pharmaceutical companies have performed some near miracles with other diseases and conditions. Unfortunately many diseases are terminal and therefore only temporary sources of revenue for doctors and Big Pharma alike. In all fairness, for every unethical doctor, there are dozens of highly respected and phenomenal physicians who are as disillusioned as we are by the actions of their peers. As someone suggested, interventional radiologists can smell the green in CCSVI as well as Big Pharma does with Multiple Sclerosis. The difference is that they are providing the right treatment for the right job. Payment is expected and reasonable. Who then are the biggest losers? Let’s see, the MS societies might not be in big demand once CCSVI is treated routinely by the Liberation Procedure. Big Pharma lose a steady supply of lifetime cash cows if they can’t convince us to pay out $2,ooo - $4,000 a month per person, for drugs which clearly cannot provide the relief from the symptoms of Multiple Sclerosis like a good roto rooter of the old “jugs” can. I’ve never seen a person ride a scooter into a clinic for their Tysbari treatment and walk out a few hours later with nice pink cheeks.

The tide is changing as more of us are successful and stay visible so our existence cannot be denied. In the meantime, while the two sides play tug of war, we are struggling and suffering to win the fight of our lives.


Anonymous said...

At last, an article that tells it like it really is..stay the course until we are all free from the ravages of this insidious enemy called MS.

Anonymous said...

So you're saying CCSVI or nothing? Isn't it true that some there are other treatments that do help other people with MS?

Unknown said...

Of course I am not saying CCSVI or nothing. It is a choice that each PwMS has to make for themselves. I can't speak to the efficacy of any other treatments for anyone else. Nothing else helped me, in fact some did real damage.