Someone recently asked me in response to my blog as well as to the success of the Liberation Procedure, "Is it just placebo effect"? This is truly a loaded question. After my initial defensive reaction, I gave it deeper thought. Placebo is truly a giant word and concept. It has negative connotations("he is just better because of the placebo effect") but it has immense power and strength. In research studies, experimenters often compare a new treatment with a placebo. In order for the treatment to be accepted, a new therapy has to be better than placebo. In most studies placebo does remarkably well ie 30-40% benefit. So 30-40 per cent of people get better with a sugar pill or an inert substance. This speaks strongly about several points.
First, approximately one third of people get better with no intervention with placebo or time or just believing that they will get better. This has enormous power. Harnessing the power of this safe intervention can be amazingly healing. As a doc, I am very conscious of this power and use it quite often to help people get better. The power of words in this setting is IMMENSE ! Just slightly altering my parting words in a patient interaction, brings very different results. Saying "call me if you are not better in a couple days" is very different from saying "call me in 2 days to tell me how much better you are doing". Similar words; different effects and results.
Using the placebo effect is not bad. Actually it is quite effective and it is much safer than using a drug or procedure which has many conceivable adverse reactions. Furthermore, some things are just harder to quantitate and study. It is easy to measure a cholesterol level or blood pressure. Human energy levels are very difficult to quantitate let alone understand. Energy is intimately connected to psychosocial variables, sleep quality, unquantifiable physical factors, and a wide variety of nutritional and other biochemical processes. Does that make it any less important? CCSVI is proposed to effect above all else energy levels. How do we discount that as important just because it is difficult to quantitate? Energy is the fuel of life -- it has to be looked at even if it is "messy".
So back to the question at hand. Is the Liberation Procedure just a fancy use of placebo? Certainly, I was and am a good candidate for placebo. I was desperate. I wanted to get better in a very real way. I hated being disabled and chronically depleted. I wanted ever so much to be "normal" again -- strong, capable, and confident. I read about the new theory of Multiple Sclerosis -- CCSVI and the procedure which was shown in Italy to reverse many of the debilitating effects of MS. The theory resonated with me. I never liked the idea of auto-immunity because it implied that immunosuppressives were the way to deal with the problem. I like my immune system. In fact, I felt proud of my immune system; proud of my ability to stay well in the face of a wide variety of infectious pathogens which I was exposed to at work. I liked the idea that Multiple Sclerosis could come from a congenital malformation; that it was not my fault.
So given all that, I am a great candidate for a placebo response. Is the Liberation Procedure real or not? The world wants to know this; needs to know this. Fellow MS'ers need to know this before proceeding with their own Liberation Procedure. Neurologists need to know this so they can refer their patients. It is not an entirely benign procedure. Things can go awry. Re-stenosis can and does happen.
All I can say is that I am different than I was before my Liberation. I can now walk hills. I can now walk fast. I can now work a full work week. I am going forward not backward. I have hope that I can continue to improve. My legs are still not smooth especially when I am tired. I still get tired and drained(who doesn't??). I can access my endorphin system through exercise which I could no longer do on land(only in the water) prior to my procedure. Yes, it is difficult to tease out the true answer but I can say from the bottom of my heart that I believe CCSVI to be real and the Liberation Procedure to be exactly what it boldly claims to be: a gateway to healing. It is a start. It still requires daily work and effort to maintain its efficacy. It is not a free lunch. It is a gateway, an opening and a chance. Yes, it uses the placebo effect to acheive its full potential but what doesn't? The mind and one's attitudes are absolute co-creators. So Mr. Placebo: lets go for a ride. Lets fly and see what we've got together. Let's live this crazy life to the fullest and let's take as many people with us as we possibly can.
First, approximately one third of people get better with no intervention with placebo or time or just believing that they will get better. This has enormous power. Harnessing the power of this safe intervention can be amazingly healing. As a doc, I am very conscious of this power and use it quite often to help people get better. The power of words in this setting is IMMENSE ! Just slightly altering my parting words in a patient interaction, brings very different results. Saying "call me if you are not better in a couple days" is very different from saying "call me in 2 days to tell me how much better you are doing". Similar words; different effects and results.
Using the placebo effect is not bad. Actually it is quite effective and it is much safer than using a drug or procedure which has many conceivable adverse reactions. Furthermore, some things are just harder to quantitate and study. It is easy to measure a cholesterol level or blood pressure. Human energy levels are very difficult to quantitate let alone understand. Energy is intimately connected to psychosocial variables, sleep quality, unquantifiable physical factors, and a wide variety of nutritional and other biochemical processes. Does that make it any less important? CCSVI is proposed to effect above all else energy levels. How do we discount that as important just because it is difficult to quantitate? Energy is the fuel of life -- it has to be looked at even if it is "messy".
So back to the question at hand. Is the Liberation Procedure just a fancy use of placebo? Certainly, I was and am a good candidate for placebo. I was desperate. I wanted to get better in a very real way. I hated being disabled and chronically depleted. I wanted ever so much to be "normal" again -- strong, capable, and confident. I read about the new theory of Multiple Sclerosis -- CCSVI and the procedure which was shown in Italy to reverse many of the debilitating effects of MS. The theory resonated with me. I never liked the idea of auto-immunity because it implied that immunosuppressives were the way to deal with the problem. I like my immune system. In fact, I felt proud of my immune system; proud of my ability to stay well in the face of a wide variety of infectious pathogens which I was exposed to at work. I liked the idea that Multiple Sclerosis could come from a congenital malformation; that it was not my fault.
So given all that, I am a great candidate for a placebo response. Is the Liberation Procedure real or not? The world wants to know this; needs to know this. Fellow MS'ers need to know this before proceeding with their own Liberation Procedure. Neurologists need to know this so they can refer their patients. It is not an entirely benign procedure. Things can go awry. Re-stenosis can and does happen.
All I can say is that I am different than I was before my Liberation. I can now walk hills. I can now walk fast. I can now work a full work week. I am going forward not backward. I have hope that I can continue to improve. My legs are still not smooth especially when I am tired. I still get tired and drained(who doesn't??). I can access my endorphin system through exercise which I could no longer do on land(only in the water) prior to my procedure. Yes, it is difficult to tease out the true answer but I can say from the bottom of my heart that I believe CCSVI to be real and the Liberation Procedure to be exactly what it boldly claims to be: a gateway to healing. It is a start. It still requires daily work and effort to maintain its efficacy. It is not a free lunch. It is a gateway, an opening and a chance. Yes, it uses the placebo effect to acheive its full potential but what doesn't? The mind and one's attitudes are absolute co-creators. So Mr. Placebo: lets go for a ride. Lets fly and see what we've got together. Let's live this crazy life to the fullest and let's take as many people with us as we possibly can.
Comments
Thank you for all of your posts, they are well written and very sincere. I am so happy for you and what you can now do. I am hoping to be liberated very soon, even if it helps just a little, it will be worth it. I have to use a walker now and if I could go back to a cane, wow, but people don't understand that every day we wait is one more day of progression and that is something us MSers can't have. Keep posting more wonderful news!
Currently, I access my endorphin system in the pool and am looking forward to a less aquatic style of cardio-exercise gratis the liberation procedure, when I figure out how to get access to it. Just a small road bump that I need to go over.
I read your blog when you were going to get the procedure done and really enjoyed your input, then I lost access to your blog. Recently, a friend gave me a link to this great blog and eureka it was yours.
Your info is timely for me, I needed the inspiration.
Blog on my friend there are many that I would like to share your link.
Thanks
Thank you for sharing your sincere and heartfelt thoughts .
However, how would you tell people to deal who have went to get scanned, and have no blockages or narrowing? I just don't know how some people with MS expect allllll time and money to be focused on this, when it will leave others with MS who do not have CCSVI (or who are secondary or primary progressive) in the dust!