CCSVI International Conferences in Italy

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To those of you interested in CCSVI but not on the EHC's mailing list, this is a

summary of the latest conference.

Janet

Subject: CCSVI International Conferences in Italy

From: news@...

To: janetorchard@...

Date: Thu, 17 Mar 2011 11:11:47 -0400

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Reflections on the first

CCSVI International Conferences

March 2011 will be remembered as the month when CCSVI really took to the world

stage. The First International Venous Endoplastic Forum in Poland and the First

meeting of the International Society of Neurovascular Disease in Italy brought

together most of the world’s experts on this condition, to share their

experience and present vital new research in this area.

The meeting in Katowice Poland attracted delegates from as far away as Argentina

and including a wide range of specialties, neurology, cardiology, vascular

surgery, intervention radiology and general practitioners. It underlined the

fact that the treatment of MS is now truly multidisciplinary. The presentations

included an excellent paper by Dr Ivo Petrov from Bulgaria showing significant

improvements in oxygen saturation following the procedure. He postulated that

this was a possible reason for the immediate improvement that patients describe

after angioplasty.

We heard news of a 500 patient study from Poland submitted for publication which

showed CCSVI on venography, the gold standard, in 94% of cases. This paper will

be of immense importance as it bypasses the controversy over the negative

Doppler studies, very dependent of operator bias. Prof Miro Denislic, a

neurologist from Solvenia, presented their findings which, in keeping with

several other papers, showed that improvements in fatigue were the most

persistent benefits in patients after angioplasty. I (Dr Tom Gilhooly) presented

our early findings from structured telephone questionnaires on 45 patients at

one month post procedure. This shows 60% of patients reporting an improvement in

quality of life and a similar percentage reporting an improvement in fatigue.

Another Polish paper showed no change in the EDSS score at 6 months but an

improvement in fatigue. The EDSS ( Expanded Disability Status Score) relies very

heavily on measuring motor function and does not appear to be sensitive enough

to pick up improvements in many other areas such as sensation, bladder function

and fatigue. It is doubtful if this tool will be useful in future studies as

there are other validated research tools which are more sensitive.

My abiding memory of this conference will be the valuable time I had with Dr

Franz Schelling, an Austrian doctor who has been proposing the vascular theory

of MS for over 40 years. He showed me from first principles the importance of

venous hypertension on the brain and told me he spent several years discussing

this with o Zamboni before the seminal CCSVI papers appeared. I left Poland

with a strong sense that by improving venous hypertension we have for the first

time, a possible way to really make a difference in this disease. Combining this

approach with immune modulation could produce the most effective treatments yet

for MS.

The first meeting of the International Society of NeuroVascular Disease (ISNVD)

in Bologna was a first rate scientific meeting. It consisted of two days of

intense activity with 50 presentations ranging from animal research to

presentations of the science on flow dynamics. There were so many highlights it

would be difficult to describe them all. The mouse model for CCSVI was produced

by ligating the jugular vein and showed a significant disturbance of gait.

An understanding of flow dynamics in the brain is vital and Prof Clive Beggs

from Bradford University gave an excellent overview of this. His conclusion was

that extracranial blockages in venous drainage will produce increased back

pressure on the small veins in the brain. This is more likely to happen in the

deep veins and would explain the appearance of perivenular lesions in white

matter. One of the most impressive studies presented was by American Neurologist

Hubbard an expert of functional MRI scanning. This advanced type of

imaging shows clear differences in blood flow between healthy normal patients

and those with CCSVI.

The differences in flow are improved following angioplasty providing an

objective measure of improvement which is difficult to achieve with other

methods.

Prof Zivadinov, the next President of ISNVD after o Zamboni,

presented an excellent paper soon to be published which showed the severity of

CCSVI was directly related to reduced cerebral blood flow in both white and gray

matter. It was another fine example of the scientific papers which validate the

vascular hypothesis in MS. This is a compelling theory where back pressure in

the veins leads to breakdown of the blood brain barrier tight junctions. This

allows the movement of iron and other blood products into the brain tissue. It

was postulated that iron is a good candidate for activation of the immune system

and destruction of the brain cells and myelin sheath. In this model, the T cells

enter the brain tissue to mop up the damage caused by this inflammation rather

than being activated in an autoimmune process.

I had the opportunity to speak with all of the speakers including o Zamboni

who was very supportive of our work in the UK.

Prof Nicolaides chaired the session on consensus white paper from the

society which outlines very carefully the current situation with respect to the

scientific research on CCSVI. I was fortunate to spend some time with him and he

was very clear that our approach in the UK was the correct one. It is vital to

get experience of the condition and the angioplasty procedure before embarking

on a randomised trial. He will be a valuable mentor in the future to make sure

our study design is correct and has enough statistical power to demonstrate the

proper outcomes. A large prospective blinded study is planned in Italy which has

been funded partly by the government. It is planning to treat 650 patients over

20 centres in Italy and should help to establish the value of this treatment.

There were some concerns at the conference over the design of the study and

particularly that it is very difficult to blind patients to a treatment which

can be painful.

Dr Mike Dake from Stanford is also involved in a blinded study where the

patients will be anaesthetised to mask any pain during the procedure. Listening

to these discussions was very helpful in planning our three country randomised

trial on CCSVI. It is clear we need to take advice from several quarters to get

this right but this was a great start to the process.

The next ISNVD meeting is in Orlando Florida next year by which time I hope to

have at least one completed paper to contribute. Both o Zamboni and Prof

Mark Haake asked if I would be involved in the committees of the society and it

will be a great honour to do so. The overwhelming feeling at the conference was

one of great excitement.

We are at the beginning of a process which is going to change the lives of

millions of people. I think this is why I became a doctor in the first place and

despite all the opposition that this new idea has had, the feeling from both

Katowice and Bologna is that this is now unstoppable.

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