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.
I got an answer from the UK MS Society
Here is the letter:
Dear Mrs Findlay
Re the MS society position regarding CCSVI
Thank you for your letter to Mr Gillipsie (date 8th December 2009) in which you ask that the MS Society considers backing research into chronic cerbrospinal venous insufficiency (CCSVI) and the Liberation procedure. I have been asked to reply.
Dr Zamboni's work on CCSVI is indeed very interesting and we are aware of planned and ongoing studies regarding CCSVI in MS. The research is currently at a very early stage of development and we are monitoring progress of the two ongoing collaborative studies; the first an attempt to treat venous obstruction in 16 individuals using balloon dilation and the second a much larger study to evaluate the prevalence of venous obstruction in people with MS.
The MS Society is an evidence based organisation and as such we do not recommend that individuals seek unproven treatments outside of a clinical trial. We appreciate that this can be frustrating for people with MS, but we have a responsibility to provide accurate informaiton about any potential risks as well as benefits of new research. For CCSVI, those risks and benefits have not been fully investigated and until then it would be inappropriate to make any recommendations regarding screening or treating for CCSVI in people with MS.
The outcomes of ongoing studies will be pivotal to determining whether further funding and research is warranted and we will consider applications for funding of CCSVI related research should these be made to our regular grant rounds, the current of which is open until 20 January 2010.
We hope that this has answered your query. We endeavour to keep our website up-to-date with the latest evidence-based information on CCSVI and encourage you to visit the website regularly for updates.
Dr Jayne Spink
Director of Policy & Research
It is interesting to note that their position seems to have shifted slightly since this subject was first raised. The following appeared on the 16th December:
http://www.nationalmssociety.org/news/n ... x?nid=2206