Has the UK's MS Society lost the plot?

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

The tactic is to look generous... ultimately

Postby reg613 » Fri Dec 18, 2009 7:37 am

They all know what's going on. Nothing happens in these domains without everybody being on board. Borders mean litttle in business these days.

There's "good cop, bad cop" going on. It's all been choreographed which country will look conciliatory, and which country, conservative.

CCSVI isn't new. It comes from the 1940s. Zamboni (and Italy) have been chosen as the flamboyant, emotional, dramatic initiators to make it look like something that other countries had to slow down. I mean the current model of MS stuff can't go on much longer. It's starting to wear a bit thin now.

Even if every MS sufferer did nothing, the CCSVI treatment will still happen. It's time to let the MS hoax go for other reasons. They want to make out as though CCSVI was something done in someone's basement. The public loves this kind of stuff and is easily fooled by it. Hollywood movies, you know.

They are faking care and safety and out-and-out opposition so that CCSVI looks new. The main problem for the neurology industry is that this treatment was available 50 years ago and no one did a thing except bury it.

To heck with not doing anything now. Why was it snuffed out before the war? This is not a new treatment so why are they acting as though it is? It's all smoke and mirrors damage control.... the main preoccupation of our lovely corporate world. Very easy to do, you just have to be willing to a stinking cad!
reg613
 

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Re: Letter to MS society

Postby Dovechick » Wed Dec 23, 2009 8:05 am

MICHÈLE FINDLAY
CLAY-WORKS

The Chief Executive
MS Society
MS National Centre
372 Edgware Road
London
NW2 6ND

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.

Yours sincerely,



Michèle Findlay



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.
Yours sincerely,

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
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Postby acol » Wed Dec 23, 2009 9:09 am

Hi Michelle

I think that the MS Society's stance has shifted quite a lot - from saying on 4 December 'Several medical advisers to the MS Society have read through the papers published by Dr Zamboni, and have heard him lecture on the subject. "They are not convinced by the evidence that blockages to draining veins from the brain are specific to people with MS, or that this explains the cause of MS at any stage of the condition' to Dr Spink saying '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......'

I doubt very much if the Society would have received any flack if they had first responded in the manner that Dr Spink has adopted to both of our letters. I still think that their biggest mistake was a failure to monitor what was happening in the wider world. CCSVI caught them on the hind hoof and when they were forced to respond they did so in a very superficial, dismissive way - no doubt orchestrated by the forthright views of Professor Comston.
Nigel
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Postby ozarkcanoer » Wed Dec 23, 2009 9:31 am

When the various MS societies, whether in Canada or the USA or elsewhere, find that many of their past supporters are now donating directly to one of the CCSVI studies (BNAC, Stanford, Dr Haacke, UBC) and bypassing them, then there will be a real wakeup call. I have donated directly to BNAC because the NMSS has been so "cautious". That is my personal decision. I don't know whether enough people will stop donating to MS societies that it will make any difference. We will see.

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