This Is MS Multiple Sclerosis Community: Knowledge & Support

I forward email I received from Dr Tom GILHOOLY UK

The new phenomenon of Chronic Cerebrospinal Venous Insufficiency (CCSVI) has taken the medical and MS world by storm.

This is the first newsletter we have released since establishing the CCSVI web registration area three weeks ago. In that time hundreds of people have registered their interest in CCSVI and the numbers are increasing daily. I would like to take this opportunity to introduce our company to you and give some background information regarding our interest in this area.

I have worked for 21 years as an NHS GP and in a private capacity at The Essential Health Clinic in Glasgow where we have one of the largest private practices in the UK for MS. Patients travel from all over the UK and abroad to be seen at the clinic for LDN and other treatments. When my patients started asking about CCSVI, I was initially quite sceptical.

MS is an area which has attracted a large number of “miracle” treatments and it had never occurred to me that venous drainage could be involved in this disease. It would not go away however and I could sense that this was generating more excitement than any previous theories.

It has now been established beyond any doubt that CCSVI is a definite clinical entity. The uni0n of International Phlebologists which represents 47 countries, unanimously endorsed this as a new condition at their conference in Monte Carlo in 2009. They decided Professor Zamboni had established “proof of concept” for this new condition. The papers from Zamboni and most recently from Buffalo University in New York have also established that there is a definite association between CCSVI and MS. It has also been established that CCSVI is a congenital disorder and precedes the development of MS. This does not mean that MS is not an autoimmune disorder but the New York data does suggest that those with both MS and CCSVI are more likely to have severe disease. All this makes the further investigation of this area a priority for the MS community.

We are actively seeking to set up a screening and treatment programme in the UK. It is vital to work with the established experts in this area and we have an experienced vascular ultrasound technician, Vic Fernando, who we expect will be trained by Zamboni's team in May. We hope to be able to commence scanning in both London and Glasgow in June. When we have more concrete details on this we will let you know. We are also seeking to establish a research project for the liberation procedure in the UK and aim to have a number of centres carrying out the procedures later this year.

We realise that there is a huge appetite for more information on this subject and are grateful for your patience in these matters. I am sure you appreciate, it is a complex matter and will require time to correctly bring to fruition. We are however hopeful that we will be able to begin taking bookings for scans in the near future and will inform you of the details soon.

What Happens Next?

Appointments will initially only be made available through our online booking system. An announcement about when this will be available will be made via email in the near future.


Be all lucky

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my daughter ms'patient since 2001

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<em>Badger
RRMS 2004</em>
Appt Katowice 23/24th March

Hi, I received this too and look forward to the trials in the UK.

If I could guarantee that I would have the tests performed correctly, and then the procedure if necessary then I would hold on. But the way things happen in the UK I don't feel that I have time to wait.

I am looking forward to seeing what happens

Mags

I totally agree with you, I have also received that news this morning, it is optimistic and i think things are changing in the UK, but that it still going to take some time...

Mind they promised a change this year !!!

The Newsletters are now also available via the Multiple Sclerosis Resource Centre The Essential Health Clinic CCSVI Newsletters page: http://www.msrc.co.uk/index.cfm?fuseact ... ageid=2969

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The Multiple Sclerosis Resource Centre

Squiffy's House of Fun - Laughter for Multiple Sclerosis

I agree - things happen too slowly here. But at least there is a start now. I guess we have to remain hopeful!