(A somewhat ironic opening to this letter considering the number of calls I made to the national office and the fact that none were returned.)

I find it very difficult writing this letter. I have been on the board of our local MS chapter in the Laurentians for a number of years. During that time I have come to know the difficulties incurred by those suffering from multiple sclerosis. I myself was diagnosed with MS more than 20 years ago. Over that time and especially since joining the local board I've done my best to raise as much money as possible, to support the multiple

sclerosis society and the various activities it promotes. Like almost

everyone I believed that research should be predicated upon the fact

that MS is an autoimmune disorder.

Obviously, what has become foremost in the minds of many with MS is a new theory based upon the fact that multiple sclerosis may not be an autoimmune

disorder, but may be caused by a constriction or a narrowing of certain

veins. This results in iron deposits, which in turn leads to damage. Like any new theory, one has to take it with a grain of salt. I am a realist. Any

disease that does not have an obvious cure can often result in many

people claiming to have found the answer that everyone is seeking. While CCSVI may not be the cause of MS obviously it is worth investigating. Perhaps

I should not say obviously, since it seemed to have taken quite a bit

of pressure for the MS society to actually come out in support of some

research into CCSVI.

Without wanting to sound overly paranoid I believe I know the reason why the MS society initially seemed to be very reluctant to even acknowledge the fact that Dr. Zamboni’s research merited any further study at all. From what I've come to see the neurologists, researchers and the MS society are acting in almost a defensive manner. It is as if the fact that someone is suggesting that the research may have been going in the wrong direction is some kind of insult.

Even now, with the grants that have been announced, the MS society still seems reluctant to support those who they should be backing the most,

that is, those of us with multiple sclerosis.

For some reason, people are being told they should not seek out testing for CCSVI. Why that is, I do not know. In Québec, the province where I live, there's only one place where one can be tested for CCSVI. It is a private clinic in Montréal. Obviously, since it is a private clinic it is not supported by Medicare and one has to pay the $400 for the testing. The test itself is a scan that is completely harmless. There is absolutely no danger involved to the person getting the scan done. Even so, the Québec College of Physicians wrote a letter to the clinic, telling them to stop doing the scans on MS patients.

To quote the neuroradiologist running the clinic, "he was stunned to learn he could no longer perform the tests.” He also stated, "it is the first

time we've ever been told we couldn't scan a body part.” The College of physicians has decided that MS patients cannot have their necks scanned.

I am astounded that the MS society has not come out in total support of people with MS wishing to be tested. It only confirms to me, how entrenched and enmeshed the MS society is with the medical establishment.

The MS society's position on testing reads as follows, "The CCSVI concept does not have a proven connection to MS at this time. As well, specialized equipment and training is needed to test for the

condition. For these reasons, CCSVI cannot be easily tested for or

treated at this time.

Additionally, for safety reasons, the MS Society recommends that people with MS be examined or treated for CCSVI only within an established research

protocol where suitable safety and outcome monitoring is assured.

Between the MS Society of Canada and the U.S. National MS Society, seven studies have been funded to research CCSVI's relationship to MS. Please note enrollment is limited and these studies are aimed at achieving better understanding of the relationship between CCSVI and are

not designated to treat CCSVI”.

Why has the MS society never publicized the fact that there are many doctors, including neurologists who believe that drugs such as the

interferons do absolutely nothing to combat multiple sclerosis?. For about nine years. I was taking beta interferon, a drug, which costs approximately $1700 a month. When I first started taking it, I could walk perfectly well with a cane. Nine years later, I was in a wheelchair. My

neurologist at the time, who is the head of neurology at a large

Montréal hospital, said that he believed that perhaps the pharmaceutical

companies producing these very expensive drugs had manipulated

statistics in order to show they did anything at all to combat the

disease.

The home page of the MS society should have a statement declaring and demanding that the rights of those with MS should be the same as those

with any other disorder. No one is asking for

unsanctioned surgeries or other procedures, which could pose some danger

but I believe only that our human rights should be respected.

Because of the fact that I've been unable to resolve this issue I find that I'm left with no choice but to resign my position on the local board.

Yours truly

Brian Segal

Piedmont Quebec