background report on CCSVI

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

background report on CCSVI

Postby Cece » Sat Sep 17, 2011 8:19 pm

http://www.cvz.nl/binaries/content/docu ... tation.pdf
Background report on whether treating
MS/CCSVI by cerebrospinal vein dilatation
complies with established medical science
and medical practice

ICD-10 code: G35 Multiple sclerosis

A background report on the treatment of CCSVI. To skip to the punch, here is what they concluded:
6. Standpoint regarding established medical science and medical
practice

There is no scientific evidence for the efficacy of widening the
cerebrospinal veins of MS patients.
The treatment of MS (with presumed CCSVI) using venous
angioplasty does not comply with established medical science
and medical practice.

I'll have to read it more thoroughly. But I think there is scientific evidence for the efficacy of widening blocked veins, whether the patient also has MS or not.
Cece
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Re: background report on CCSVI

Postby Dovechick » Sun Sep 18, 2011 3:28 am

I don't know if I want to spare the time to read this in full. I have come across a seriously wrong estimate of the number of MS patients in Scotland or even in the UK. In Scotland the numbers are likely to be three times what they quote. We have done a small amount of research in this area and from our results it appears that number of MS patients should be more like 165,000 in the UK rather the 65,000 that the figures they quote translate to, and I am seriously rounding down. So far the figures we have received from Doctors average out at 0.29% of the population. And because we only have a couple of results from Scotland we cannot be sure if what I suggest is correct, the figures we have got from England are as high as those we have from Scotland.
If some one reading this lives in the UK, please help us get more accurate figures by writing to doctor's surgeries in your area. There is a letter you can use here:http://www.vital-now.org/#!vstc5=letters/vstc3=action-dd-4-7/vstc1=action
Thanks
Michele
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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MS in UK and NL review

Postby MarkW » Sun Sep 18, 2011 9:54 am

The most recent research of number of pwMS in UK is 100,000. Search MS Trust for details.

The review is bad news for people in NL wanting CCSVI treatment. The Dutch government has produced a review which concludes they should not pay for it.

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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Re: MS in UK and NL review

Postby Cece » Sun Sep 18, 2011 11:02 am

MarkW wrote:The review is bad news for people in NL wanting CCSVI treatment. The Dutch government has produced a review which concludes they should not pay for it.

That sums it up precisely.

Here's a quote about the inclusion/exclusion criteria:
The only articles considered were those that provided facts
and figures on effects on the course of MS.
Studies that focussed on different outcome indicators, such as,
for example, safety and implementability, were not considered
because they would only be relevant to this report if there
were indications of favourable effects on the course of MS.
Anything less than comparative research was not considered
sufficient. In particular because this is a disease with widely
diverging symptoms and an unpredictable and variable course.

This is where it would help to have CCSVI accepted as a disorder of its own (or a syndrome of its own) and then be looking at the treatment outcome on the condition of CCSVI itself, not on the course of MS.
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Re: background report on CCSVI

Postby Cece » Sun Sep 18, 2011 11:05 am

And here are the results of that literature search: nothing. They were looking for a comparative study that reported facts and figures on the course of MS after venoplasty treatment....that must mean randomized controlled? Then they note that there are four trials underway, which might meet these standards.

3.a. Results of the literature search
The literature search did not reveal a single article for
inclusion. Two studies by Zamboni et al. 8 9 were excluded.
Though these did report a form of clinical outcome indicators,
such as QoL and MS phenomena, or the lack of a relapse, there
was no comparative element whatsoever. It is impossible to
say whether the outcomes reveal the natural course of the
disease, or revealed non-specific effects or results of selection
bias.

Not a single comparative study was found that reported facts
and figures on the course of MS after treatment with
angioplasty.

The trial register found four current trials into the effects of
angioplasty on MS (see in appendix 1: studies 1 to 4). The
proposed end dates of the studies are between 2010 and
2015. These results are not yet available.
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