Angioplasty for CCSVI being monitored in UK

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

Angioplasty for CCSVI being monitored in UK

Postby cheerleader » Fri Aug 13, 2010 10:12 am

National Institute for Health and Clinical Excellence (NICE) in the UK is monitoring progress and interest in angioplasty for CCSVI-
(This is a 180 from the official stance on "widening veins will not help pwMS" made last December--)

For UK residents to Register Interest:

http://guidance.nice.org.uk/IP/891

cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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NICE interest is first step

Postby MarkW » Fri Aug 13, 2010 12:13 pm

Hello Cheer,
NICE interest is first step but they are renown for slow progress (like FDA but slower). NICE approves all drugs and therapies for use in England and Wales for the National Health Service, it is an official government body. The quote you used was from Prof Alistair Compston on behalf of the UK MSS, an MS neuro who devoloped Campath 1H, very anti CCSVI.
I will follow the NICE website and send them data from time to time. First info will be the Daily Telegraph article on 12 July. Later step will be papers and websites on CCSVI (like the new alliance one). I will drip feed info otherwise we could flood them with data.
Kind regards,
MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 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
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Postby cheerleader » Fri Aug 13, 2010 4:14 pm

Great, Mark-
Glad to know you are on it. Hope you're doing well!
We keep updating the Alliance site--although we're focused on US, hopefully it will be a help. www.ccsvi.org
take care,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby ConstableComfortable » Fri Aug 13, 2010 5:07 pm

I saw this a few days ago and the only thing that worries me about it is the fact that "MS" is mentioned in the procedure title....Balloon angioplasty with or without stenting for chronic cerebrospinal venous insufficiency (CCSVI) in MS.
As soon as MS is mentioned the Neurologists are all over it. This is a vascular issue. Is there any way of suggesting another investigation to the NICE people, one which doesn't mention MS?
Who makes the recommendations to NICE anyway?
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Postby ConstableComfortable » Fri Aug 13, 2010 5:08 pm

I saw this a few days ago and the only thing that worries me about it is the fact that "MS" is mentioned in the procedure title....Balloon angioplasty with or without stenting for chronic cerebrospinal venous insufficiency (CCSVI) in MS.
As soon as MS is mentioned the Neurologists are all over it. This is a vascular issue. Is there any way of suggesting another investigation to the NICE people, one which doesn't mention MS?
Who makes the recommendations to NICE anyway?
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Re: NICE interest is first step

Postby L » Fri Aug 13, 2010 6:29 pm

Thanks for that Cheerleader. Interesting that NICE have registered an interest. I look forwards to seeing what will come of it.
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