The Chief Executive
MS National Centre
372 Edgware Road
8th December 2009
Dear Mr Gillespie
Re The MS Society position regarding CCSVI
I am the mother of a 30 year old woman who is on the verge of not being able to walk. Over the 10 years since her diagnosis she has not received anything but steroids and physiotherapy as treatment for her condition, no hope, no expensive medication, only one MRI and very little time with a neurologist. To be quite honest she does not feel she has missed out on anything, as there has not been any treatment remotely likely to significantly alter the progression of her disease.
But suddenly things are different, CCSVI and the Liberation procedure have given the small number of people who have undergone it a new lease of life, some hope of halting the progression of the disease and some definite immediate improvements, even if these are not, in the short term, recovery of much physical ability for those who are more severely disabled. Take it from me that my daughter would be completely satisfied with a halt to the progression and less fatigue which are both commonly reported improvements. For that she is prepared to take the risks attached to the procedure; for what in life is risk free, even those lucky enough to have been given disease modifying drugs have to run the risk of side effects including death and failure to significantly alter the course of the disease.
Please consider your position regarding the advancement of this procedure. I understand that this may lead to a complete reappraisal of the status of the society and that may well be a difficult decision to make but we are talking here about the quality of life of thousands of people and their families, a good proportion of the MS patients being in their early adulthood. There surely cannot be a valid argument to ignore such a cost effective and relatively simple treatment. There might well be an added advantage of a means of early diagnosis of MS if thorough studies back up the initial research that revealed that all people with MS who took part in the initial research and subsequent treatment had venous stenoses.
I hope that you will consider carefully this possible new strategy for treating MS, back some research into it and consequently give our MS loved ones some hope of a better future.
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