Open Letter to Gordon Brown, MP
Reply to the Petition Response: from MS-CCSVI-UK

Right Honourable Gordon Brown, MP                                                                                                                   19^th April 2010
10 Downing Street,
London SW1A 2AA

Dear Mr Brown,
On Wednesday 31st March the UK Government issued its response to the petition received from 10,659 UK citizens and residents calling for the CCSVI treatment procedure to be made available in the United Kingdom.

It was with great disappointment and incredulity that we read this statement:

          The Government is aware of Dr Paolo Zamboni’s findings. However, as this is the only piece
          of research on the link between CCSVI and MS that is currently available, it is important to
          approach such findings with caution until a further review of the research has been conducted.

          A number of medical advisers to the MS Society have read the papers published by Dr
          Zamboni, and have heard him lecture on the subject.  The advisers have provided the
          following statement about the alleged link between MS and CCSVI:

                    “We are not convinced by the evidence that blockages to draining veins from the
                    brain are specific to people with multiple sclerosis, or that this explains the cause of
                    multiple sclerosis at any stage of the condition.

                    We are all agreed that people with multiple sclerosis are not likely to benefit by
                    treatments that dilate blood vessels and consider these procedures to carry risks with
                    no evidence for benefit. “

          The treatment for CCSVI is not available for patients with multiple sclerosis in the United
          Kingdom because there is no convincing evidence to suggest that it is safe or beneficial to
          people with MS.

          The Government is determined to make the UK the best place in the world for health
          research, development and innovation and to invest its substantial health research budget in
          the best possible way.

          The Government’s research strategy ‘Best Research for Best Health’ is resulting in an
          expansion of the Department’s research programmes and in significant new funding
          opportunities for health research.  The National Institute for Health Research programmes
          support high quality research of relevance and in areas of high priority to patients and the
          NHS.

There were three reasons for our disappointment:

1. This response was practically identical to letters received by our members in reply to the written enquiries to their MPs regarding the need for research into CCSVI in MS patients. This implies that this was a stock reply which had been composed at an earlier time and that no-one had taken the trouble to do some research to update it.   We had expected a modicum of courtesy and appreciation for the effort that MS-CCSVI-UK and the signatories had put into the petition.
2. The response was inaccurate in several respects:
   a)  Dr P Zamboni’s initial paper was not the only piece of research available at the time this statement was written.  Results of the Buffalo trials were made available on the 10^th February, nearly one month previous to the statement.
   b)  In December Vascular Surgeons met and agreed that CCSVI was a congenital defect which therefore preceded MS and could not be classed as having been caused by MS, in other words this was a condition that could be treated independently of the facts that the patient may be suffering from MS. http://www.ncbi.nlm.nih.gov/pubmed/20087280
   c)  In February the University of Buffalo NY, published preliminary results of their study which showed that more than 60% of people with MS had CCSVI. http://www.buffalo.edu/news/10937
   d)  Additionally there is another research paper available that links vascular comorbidity with the rapidity of progression of MS. http://www.ncbi.nlm.nih.gov/pubmed/20350978 admittedly this paper has only just been made available but a little of research and enquiry may have revealed that this research had been taking place.
3. The response was centred on the views of a small number of advisors to the Multiple Sclerosis Society.  The MS Society is not part of the Department of Health, it is not our elected representative, it is a society whose policies are influenced by its advisors who may have a vested interest in the use of Disease Modifying Drugs for the treatment of but a minority of people with MS.   The Department of Health needs to be more sensitive of the request of UK citizens and examine the reasons why the MS society may not be supportive of an alternative way of looking at and treating people with MS.

MS-CCSVI-UK, its members and the signatories of the petition welcomes the fact that
          “The National Institute for Health Research programmes support high quality research of
          relevance and in areas of high priority to patients and the NHS”.
Indeed, the delivery of the petition to Number 10 was intended to invite the Department of Health to recognise the potential importance of Prof Zamboni’s findings. Rather than avoiding its own responsibility, and effectively ignoring the 10,659 voices calling for clinical research, a far-sighted Government would, through NIHR, and by encouraging the MS Society to review their position, support applications for funding, as a priority, for clinical research into the possible link between CCSVI and Multiple Sclerosis.

Michèle Findlay
For and on behalf of MS-CCSVI-UK