Chronic cerebrospinal venous insufficiency (CCSVI)
Some people with MS have had treatment for CCSVI privately. However, this treatment is currently unproven, and the MS Society recommends against seeking an unproven treatment outside of a properly regulated clinical trial.
Find out more on this page:
- What is CCSVI?
- Does CCSVI cause MS?
- Is there a treatment for CCSVI?
- What do people with MS say?
- What does NICE say?
- What happens next?
- What is the MS Society doing about CCSVI?
- Why isn’t the MS Society UK currently funding CCSVI research?
CCSVI is a syndrome characterised by poor removal of oxygen-depleted blood from the central nervous system. This is thought to be caused by a constriction of blood vessels in the brain and neck which affects brain blood flow and drainage.
An early-stage study published in 2009 looked at the prevalence of CCSVI in people with MS, and found that CCSVI was present in 90 per cent of people with MS. Since then, there has been an enormous amount of interest in the potential link between CCSVI and MS. Numerous studies have been carried out and reported, all with varying results, but it is still not clear whether there is a link between CCSVI and MS.
There have been many studies ranging in size looking at the prevalence of CCSVI in people with MS, in people without MS, in people with other neurological conditions and in people with clinically isolated syndrome. The studies done so far report conflicting information, so it’s difficult to draw firm conclusions from them.
This means that there isn't enough evidence to properly understand how CCSVI relates to MS. We don't yet know if CCSVI causes MS, increases the risk of developing MS, is a result of having MS, or is an entirely separate condition.
As larger, more definitive, studies are completed we hope to have a better understanding of the relationship between CCSVI and MS.
The MS Society is aware that some people have undergone a surgical procedure for CCSVI that inflates a balloon into the veins, or involves inserting stents into the affected veins. The aim of these procedures is to improve drainage from blood out of the brain.
Because there is a lack of research evidence to suggest that this is a safe or effective treatment for people with MS, we do not recommend that people undergo this procedure outside of a properly-regulated clinical trial.
To date, there have been a limited number of studies investigating the safety and effectiveness of balloon dilation in treating CCSVI. Until trials are conducted it is not possible to be sure of the potential risks and benefits of the procedure for people with MS.
CCSVI is a controversial topic, with differing opinions among people affected by MS. Anecdotal reports from people who've had the treatment vary - some people report benefits, others report initial benefits then symptoms seem to come back, others report no benefits and some say their symptoms have worsened.
We will hopefully have a better picture of the benefits and risks of CCSVI treatment in people with MS when results of large-scale randomised controlled trials are published.
The National Institute for Health and Clinical Excellence (NICE), which is the health body that determines whether particular treatments should be available through the NHS, announced their guidance relating to CCSVI and MS on 28 March 2012:
“Current evidence on the efficacy of percutaneous venoplasty [the surgical procedure to improve blood drainage] for CCSVI for MS is inadequate in quality and quantity. Therefore, this procedure should only be used in the context of research."
This is in line with our position on CCSVI.
In May 2012 the US Food and Drug Administration (FDA) issued a safety communication on CCSVI stating that people with MS should:
“Be aware that there is lack of clear evidence of the existence of CCSVI. Furthermore, the link between CCSVI and MS and the safety and effectiveness of the CCSVI treatment procedure in MS patients has not been established.”
The statement also highlighted the risk of serious complications as a result of CCSVI treatment procedures.
Larger studies are needed if we are to fully understand the relationship between CCSVI and MS. It’s important for the research community to work together to get the answers we need as quickly as possible.
To speed up the research effort in this area, we have been working with MS Societies from the USA, Canada, Italy and France as well as the MS International Federation to ensure that key research gets funding and that this research adds to our current knowledge of CCSVI and MS.
As a result of this collaboration, the MS Societies in the USA and Canada are jointly funding seven key studies looking at various aspects of MS and CCSVI. The studies, which are being funded for two years, have reported back on their first eighteen months' progress.
We hope that these and other studies will give us a better idea of the relationship between CCSVI and MS, and will inform future research in this area.
In addition, there are several other studies taking place around the world funded by other organisations. Some of these studies are exploring the links between CCSVI and MS and others are looking at whether treatment for CCSVI is safe and effective in people with MS. The results of these studies will go some way in giving us the answers we need.
We've been working with MS Societies in Canada, USA, Italy, France and the MS International Federation to coordinate research and information on CCSVI. On the basis of this work, the MS Society in the USA made the international call for research into CCSVI to allow researchers from any country around the world to apply for funding.
The seven projects, costing more than $2.4 million, are a step in the right direction for CCSVI research and are aimed at providing the answers that are needed as quickly as possible.
We hope that by working together, and in a coordinated way, we’ll improve our understanding of CCSVI and its potential link with MS.
We want to see key research in this area completed so that people with MS can get the answers they need as quickly as possible. We're open to funding research into CCSVI and MS, as long as it is high quality, relevant and adds to the knowledge about the relationship between CCSVI and MS.
We also encouraged UK-based researchers to apply for funding for CCSVI-related projects through the National MS Society’s (based in the USA) call for research.
You can read more about the research projects we’re currently funding on our website.
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