Thursday, 28 July 2011

CCSVI - NICE to review the procedure

NICE has been notified about CCSVI and will consider it as part of the Institute’s work programme.

The Interventional Procedures Advisory Committee (IPAC) will consider this procedure and NICE will issue an Interventional Procedures Consultation Document about its safety and efficacy for 4 weeks public consultation.

 IPAC will then review the consultation document in the light of comments received and produce a Final Interventional Procedures Document, which will be considered by NICE before guidance is issued to the NHS in England, Wales, Scotland and Northern Ireland.

If you wish to be alerted to developments regarding this procedure, including the release of the consultation document, please express your interest on the NICE website.

"Some action at last! Good news for all you CCSVI'ers, at least the relevant professional bodies are taking notice and will provide an objective overview of the field, free of any conflicts of interest."


"Hopefully, the safety of MS'ers considering undergoing an intervention for the condition will be NICE's top priority. We don't want any deaths from CCSVI procedures done in the UK."

Additional reading: please see other posts on this blog using the search term "CCSVI"

9 comments:

  1. NICE are consulting with patients in the UK about CCSVI treatment.

    There is a public consultation running from 24 August until 21 September 2011. Even if you have been treated abroad for Chronic Cerebrospinal Venous Insufficiency (CCSVI) NICE would like to hear from you.

    Anyone is able to comment, and the PPIP team at NICE will be producing a fact sheet outlining the type of comments the committee would like to see from patients, which will help you when making your comments.

    Anyone interested in commenting please contact Emma Chambers at NICE to register your interest and she will send a factsheet about the sort of things they would like to know - emma.chambers@nice.org.uk

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  2. I don’t know of any credible neurologist who is convinced by the clinical merits of CCSVI. It is merely snake oil being sold to desperate masses reluctant to accept that medical science is unable to cure them.

    N.I.C.E. is wasting both time and money by reviewing CCSVI. I would rather they fast track Fampridine or Fingolimod for progressive MS.

    I’d love to know how much Government funding is given for stem cell research. The truth is that if anything will be a panacea for MS it will be stem cells, yet, funding is sparse. Even Bristol scientist Neil Scolding had to get his funding from the Americans for his bone marrow stem cell trials. That’s just shameful.

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  3. Venoplasty is a common intervention with the NHS stipulating as acceptable a fatality rate of 1 per 100. This intervention is currently denied people with an MS diagnosis partly due to claims about ‘unproven safety’ yet out of 20,000 plus such interventions worldwide there have been two fatalities known to have been directly connected to the treatment. When this treatment is 100 times safer than the NHS’s own standards permit there is clearly a serious discrepancy that requires urgent attention.

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  4. Re: "Venoplasty is a common intervention ..."

    Yes, but there is zero evidence that it works in MS, part from some anecdotal reporting. It is becoming increasingly clear that CCSVI does not exist as a disease entity and it is clearly not the cause of MS.

    Please read post on this blog on the Bradford-Hill criteria of causation and "Bad Science" by Ben Goldacre.

    Two deaths, two unnecessary deaths, should never have occurred. They unfortunately occurred outside of ethically approved clinical trials so we will never learn from them.

    Zambone also had undeclared conflicts of interest, which now need to be taken into account when assessing his initial evidence. As a result I personally have grave doubts about the robustness of his initial findings.

    The important news is that there is plenty of independent evidence still to come and a NICE systemic review. All will be revealed. Watch this space.

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  5. "Hopefully, the safety of MS'ers considering undergoing an intervention for the condition will be NICE's top priority."

    Just addressing the point you raised....

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  6. RE 'Anecdotal reporting'
    By which you mean the experiences of the patient population you are meant to represent. I’m sure you know best though.

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  7. I am a patient with MS who also has CCSVI and had that treated, if my veins need fixing why should I be denied treatment just because I happen to have MS also? There are more deaths from the ineffective drugs they prescribe us than there have been amongst patients who have had treatment for CCSVI.

    This is a case of descrimination for sure

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  8. Re: "....why should I be denied treatment just because I happen to have MS also?"

    It depends on the health care system you have access to. In the UK the NHS is free at point of service and tries to provide cost-effective healthcare, paid for by the taxpayer. At the moment there is no evidence that treating CCSVI is cost-effective; at the moment all we have are the costs (very high for private individuals), but no efficacy data. I suggest you wait for NICE's ruling.

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  9. Re: "There are more deaths from the ineffective drugs they prescribe us ..."

    It would interesting to know which drugs you are referring to. It is also important to quote the relative risk of dying from a treatment; to do this we need to know how many MS'ers have been treated with the drug to make a fair comparison.

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