Madam, – As the national organisation providing information and support to the MS community, we share Godfrey Augustt’s interest
(October 11th) in chronic cerebro-spinal venous insufficiency (CCSVI).

Over the years we have witnessed many potential and experimental

treatments for MS come into focus. While not all of these become

significant treatment options, they all play a role in advancing

research and improving our understanding of MS.

CCSVI is in the initial stages of research. Dr Paolo Zamboni’s study showed very strong
evidence to suggest a link between the narrowing of veins and MS.

However, subsequent research conducted, using more standard protocols,

has not showed the same results. Two German and one Swedish study

indicated little statistical difference between the presence of narrow

veins among those with MS and those without.

The research now available proves only one thing; that more research is needed.

There are 8,000 people with MS in Ireland and each uses various treatments,
interventions and techniques to manage MS. We believe in free choice and

our role is to provide enough information for people to make their own

decisions about their treatment options. We encourage people to read,

research and speak to their healthcare team. However, we do encourage a

person to be cautious about any treatment or technique that has not yet

been proven to be safe or effective in the treatment of MS. At all times

we want to protect the health and well-being of people with MS and

their families.

In relation to Mr Augustt’s assertion that MS Societies receive “huge amounts of money” to advertise pharmaceutical
products, I can say that this is not the case in MS Ireland. Under the

Irish Pharmaceutical Healthcare Association’s guidelines, we cannot

advertise products on a pharmaceutical’s behalf. We do not promote any

pharmaceutical other than giving standard information on all products to

facilitate the decision making process of people with MS.

The contribution we get from the pharmaceuticals, which is all unrestricted,
accounts for 4 per cent of our annual income. It is spent on our core

services such as our information services, care centres, home visit

services and counselling. Our website www.ms-society.ie carries further

information about CCSVI. – Yours, etc,

ANNE WINSLOW,

Chief Executive,

Multiple Sclerosis Ireland,

Northumberland Road,

Dublin 4.

http://www.irishtimes.com/newspaper/letters/2010/1102/1224282486649.html