Print Headline (large+bold): 'It's a turf war, and we are the losers'
Daily Telegraph CCSVI feature on 12 July 10 page 23 by Liz Hunt.
www.telegraph.co.uk/health/7882358/Can- ... elief.html
Alan 'famous at last' Browne wrote a personal piece on his experience, missing from online version. UK MSS comment is also included for completeness.
‘It is amazing to be a proper Dad again’
Alan Brown, [pictured right], is 43 and was diagnosed with MS in 2001. He lives in Milton Keynes with his wife and three young sons, where he runs an IT software company. He had two obstructed veins ublocked in May this year at a clinic in Poland.
“Two years ago things started going downhill. I had major fatigue, and weak legs and arms. I heard about CCSVI earlier this year and began researching it, emailing everyone I could about testing and treatment. I went to Poland in May [cost including flights and accommodation was £3,200], and they found a blocked right jugular vein and partially blocked left.
I didn’t notice anything immediately, except my left foot, which had always been cold, was warm.
I flew back and had to get a bus and a train back to Milton Keynes, but didn’t feel tired at all. That continued. Usually, I’d get home from work, sit on the sofa, have dinner, then go to bed exhausted.
Now, I get home, play with my boys, cook dinner, help put them to bed, do a bit of DIY –and I’m still not tired at 11pm. I still have MS, I cant’ walk very well or far, my hands are still numb, my arms still ache, but our lives are transformed. I have a new zest for life, my brain feels clear and alert. It’s amazing to be a proper Dad again.”
Dr Dough Brown is head of Biomedial Research at the Multiple Sclerosis Society. He says: “While we understand the freedom of an individual to make a choice about tests and treatments, we do not recommend unproven therapies.
Chronic cerebrospinal venous insufficiency (CCSVI) is an interesting avenue for research, but these are early days. We need more research to demonstrate further evidence of a link between CCSVI and MS. If that could be shown, we would want to see clinical trials of the treatment.
Most of our members are pleased with our evidence-based position, and we are open to funding research, and inviting applications.
We are part of an international push to find out a soon as possible whether or not CCVI is a factor in this disease”