UK: Article on ‘NHS choices’ website re CCSVI

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

UK: Article on ‘NHS choices’ website re CCSVI

Postby Mutley » Mon Nov 30, 2009 1:36 am

http://www.nhs.uk/news/2009/11November/Pages/MS-and-blood-flow-from-the-brain.aspx

Great news that CCSVI is slowly creeping onto the UK NHS radar but this is somewhat tempered in that the information listed doesn’t quite correlate with what I’ve already read elsewhere about CCSVI. This is quite sad because a number of UK health professionals refer to this site and may well be influenced by the underlying tone of the article. Reading between the lines, they seem to be pushing the angle that it is yet to be proven whether CCSVI is a cause or a consequence of MS. I may be wrong, but I can’t help but feel that some of the information given is a touch watered down too.
Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5
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Postby ikulo » Mon Nov 30, 2009 7:08 am

In the conclusion section the article states:

This is valuable research that builds on what is known about the physiological changes that occur in the venous system draining the brain and spinal cord in people with MS.


Am I missing something? Since when were vascular changes linked to MS? I mean, Dr. Schelling's studies never gained traction in the mainstream media, right?
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Postby Mutley » Mon Nov 30, 2009 12:48 pm

I also laughed at:

BBC News has reported this research well.


So that'll be just the one article then.....
Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5
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Postby acol » Tue Dec 01, 2009 3:21 pm

Well it will be interesting to find out the result of my referal to a vascular consultant for CCSVI on 11 December. I am becoming increasingly pessimistic as to the outcome.
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Postby acol » Wed Dec 02, 2009 3:45 am

I was also interested by this quote from the article.
It is also possible, as the researchers suggest, that the venous changes could be a side effect of the drugs used in MS.


Does anyone know if such a comment was made by researchers? As far as I am aware relatively few people in the UK are on disease modifying drugs such as the interferons. These drugs are very costly and as such they tend to be rationed. The vast majority of sufferers, myself included, are on cheap generic drugs which simply deal with the side-effects of MS. Many of these drugs are fairly common and are used to treat a whole host of illnesses - not just MS.

I would be surprised if ALL the patients in Dr Zamboni's study were on these specialist drugs. For this reason I query the accuracy of this quote.

Once again we can see that the main thrust of the article is to try to show that CCSVI is very much in its infancy and that there are loads and loads of unanswered questions which will take years and years to sort out. Patients should not hold their breath.....
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Postby Mutley » Wed Dec 02, 2009 4:01 am

Hi Nigel,

I don't believe that there is any real basis for their quote. I say that because there are people on here who have never used any of the main disease modifying therapies, but HAVE been diagnosed as having CCSVI.

Isn't it amazing to see the contrast between how the UK is (not)embracing this compared to Canada/Poland/America. Makes me sad :cry:
Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5
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