This Is MS Multiple Sclerosis Community: Knowledge & Support

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.

Available online:
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.”
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‘Unproven therapies’
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”
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Yahoo!

Well done Mark - shall be looking out for it.

Claire

Well done Mark,

I suppose you will be buying copies of the newspaper for your vascular doctors and neuros (they will love you as much as they love me).

Turf war? that's the first I've heard of this!

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RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap

I never bought the Daily Telegraph before! New experiences..

There is absolutely no way that neurologists want to control the multi-billion dollar MS enterprise. What rea$on could they possibly have?

Turf war? Is paranoia a side effect of DMDs? Or a placebo of CCSVI? It's all so confusing! Save us neuros!!!

Alan Browne wrote a personal piece on his experience. Newspapers (even the serious ones) like this approach.
Thanks to Alan and the other people who voluteered to share their experiences.
Kind regards,
MarkW

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Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html

The accepted British wisdom is that Americans do not share our dry British sense of humour. TIMS shows some of you do. Thanks.
Kind regards,
MarkW

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Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html

Good effort, Mark. I shall try to get a copy tomorrow.

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3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,

I didn't see it there on line yet, but there was an interesting article about sarcoidosis at the bottom, and one about a doctor turned patient on the NHS...they should all try it out!
Gibbeldygook, is everything okay with you?

Paper has arrived and it is a full page feature on p23. I probably should not show my face in the Neurology Dept of John Radcliffe Hospital for a few days.
Kind regards,
MarkW

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Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html

How about every CCSVI supporter in the UK buying a copy for your MP/MSP/AM and sending it with a personal letter ? I will cover MPs for Oxford West & Abingdon, East Oxford and Witney, hope others will join in.

Online version is same text but a different photo of me. Unfortunately Alan's story is missing online:
www.telegraph.co.uk/health/7882358/Can- ... elief.html

Kind regards,
MarkW

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Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html

Great article. Loved the words caught in the crossfire.

Well done Mark!

Good luck and I hope that you have steady progress.

Mags x

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Alone we can do so little, together we can do so much