I for one am getting tired of all the controversy and BS that flows from this subject. All talk and no action. This subject is being talked to death. I have asked for details on the "7 Studies" that are said to be underway in Canada. I have asked the question many times. Not once do I get an answer. All I want to know is - Where are the studies being done? Who is doing them? and What is the criteria of each of the studies? The none answer tells me that either there are no studies or there is a complete lack of co-ordination of the studies. I sent the following e-mail in response to a letter I received from Leona Aglikkaq

Re your attached letter, we went ahead and did our own research regarding CCSVI and MS. And to be quite honest, it was a successful study. While our government and medical community stand around with their hands their pockets, we went to Sofia, Bulgaria and my wife had the "Liberation Treatment" at the Tokuda Hospital.

After the procedure, my wife was returned to her room. For the first time in over 16 years, she was completely free of pain. Now that may be explained away as a "placebo effect" but while we were talking, I was observing her posture and the way her body was positioned.

First she could never lie on her back without a great deal of pain. She was lying on her back and was not in discomfort.

Second, she had her right hand lying on her chest with the fingers straight. I observed her using the hand for a while and then asked her to look at her right hand. She was very surprised as normally her fingers are all curled up. She had not been able to use her right hand in some time. She now can eat meals with it, cut meat with it; and a variety of other tasks that she could not do before. How do you explain that as a placebo effect?

Third, she has been able to take steps unaided. Prior to that, if she did not use her walker or crutches, I would have been picking her up off the floor. Placebo effect? I think not.

Fourth, she can look up, down and to both sides without pain in her neck. Again something she could never do before. Just doing up her coat was a real chore. I guess that must be a placebo effect too.

During our time in Sofia, we met at least 12 other couples from Canada, 4 couples from Norway, three couples from England, plus assorted couples from many other countries that we saw in the hospital. There were people arriving daily for the treatment. On several nights, we had a "Canadian" dinner night and compared stories. Everyone, and I mean everyone, had seen positive results. It varied in degree, but not one person would hesitate to go back.

You say that you understand the "significant challenges" that we all go through but you really don't understand. You don't walk in our shoes. If you did understand, there would be no hesitation to move forward and conduct the trials. It will take decades to prove the link between CCSVI and MS and we don't have that time. The treatment eases the symptoms. The "if and when" clause guarantees that it will be decades before anything is done. In the meantime, the European countries are decades ahead in their research. Our neurologist said that the only way to prove this theory is to conduct the trials. By going the path you are on guarantees inaction. While were were at the Tokuda Hospital, there was a major European conference that took place at the hospital. We were allowed and encouraged to attend. We spoke with a Neurologist and a Cardiologist from Slovenia who shared the same thoughts as our Neurologist. They could not understand why the Canadian government and medial associations would stand in the way of the trials for people with PPMS and SPMS. Right now, no treatment is offered in Canada for people for PPMS. Our government and the medical associations choose to toss these people aside like you would a piece of trash. These are people who have paid taxes in this country and would like something in return.

If you want a "standardized approach" to treatment and diagnostics, you only have to talk to the experts who have the experience. Or do you feel that we need to reinvent the wheel here. This is an angioplasty. It works. Study it while offering the treatment.

The cost was significant for us to have this treatment done but we had no other choice. It is a physical cost as well as monetary. We travelled for 22 hours to reach our destination and 22 hours to return. The physical cost to my wife was huge. Our government and health officials have abandoned us. You say that there are several diagnostic trials under way to establish if there is a link between CCSVI and MS. I have asked several times for someone to give me details on who is doing the studies, where the studies are being done and what the criteria is. To date I have not received one answer to that question. That leads me to believe that it is all smoke and mirrors. For once I would like my government to be honest with me and the rest of the MS community. Is that too much to ask? Instead of platitudes, give us answers. Give us this treatment.

Unfortunately, we realize that letters like this fall on deaf ears.

Betty and David Riches