CCSVI and Health Charities

A term used to describe compromised flow of blood in the veins draining the central nervous system. CCSVI has been thought by some to have a role in the cause of multiple sclerosis (MS). This hypothesis was first put forth by Paolo Zamboni in 2008. 

Paolo Zamboni also devised a procedure known as “Zamboni liberation procedure or Zamboni liberation therapy” which involves angioplasty (or stenting) of certain compromised veins, in an attempt to improve restricted blood flow.
Current research has been unable to confirm whether CCSVI has a role in causing MS or whether it may be a contributing factor amongst a number of MS people. 

The procedure has generated optimism among people with MS but has received scepticism amongst the medical community. This is not unusual; history has shown that the MS community leaps from one hopeful source to another depending what is “the flavour of the month”. On the other hand the medical community always disagrees with any hypothesis that does not fit with their opinions. (Almost like playing god). “We know best” is their view.

The MS person moves between hope and despair and history demonstrates this when one considers past revelations – Such as “Stem Cell Therapy” – Various Dietary Plans – Homeopathic Therapies etc.

Enter the MS Charities – between them (Internationally) millions and millions of Dollars ($), Pounds (£), Euros (€) and just about any other monetary unit, passes through their hands. All provided by the MS community in the form of donations, legacies and gift aid.

When the Paolo Zamboni procedure arrived on the scene and as with any new and novel therapy, it immediately raised an enormous amount of interest within the MS community.

This was to be expected and welcomed by any individual compromised with MS and yet again their despair moved towards hope.

Now, hope became blunted by a total failure of the MS charities (internationally) to move swiftly to take advantage of an opportunity to immediately fund a trial or trials that would enable CCSVI to be added to the tool box of therapies that may benefit the MS person. At that time it was proposed by several (independent) research centres in the US and Canada to undertake researching trials that would prove, or disprove the CCSVI hypothesis.

The funding costs were considered to be somewhere in the region of 2 to 3 million pounds (£’s). “Peanuts compared to the amount of money available to MS charities”.

Now what happened then, a lot of “feet dragging” and opposition within the medical community occurred and it was not until a degree of awareness increased across the MS community that some level of real interest and funding began to emerge.

This has taken several years, years that have been lost. It was considered, at the time, that to prove, or disprove, the CCSVI hypothesis under research trial controls would take about six months plus additional time to put in place guidelines for “vascular surgeons” to follow.  

Has anybody noticed that the medical community opposition arose mostly amongst neurologists when CCSVI is a vascular condition?

Has anybody considered who advises MS charities, it wouldn’t be neurologists would it?

Has anybody considered whether the donations MS charities, and other health charities, receive from “Big Pharma” has any influence on their consideration?. But let us stick with MS for the moment.

Looking at the MS community in the UK it may appear that the only practical actions that were and are, undertaken to provide the opportunity for an MS person to attain the best ‘Quality of Life” for them are that which they have undertaken themselves. A good example within the MS community are the independent therapy centres (self-help groups of people, their families and friends) and not the MS Society.  

These centres offer alternative and complementary therapies such as hyperbaric oxygenation, physiotherapy, reflexology and the like in an atmosphere which is essentially informative and cheerful.

Consider this, hyperbaric oxygenation, which has a large following within the independent MS therapy centres has not been well supported by the mainstream MS charities and indeed in the past was denigrated. Although many millions of hyperbaric oxygenation sessions have been undertaken and many case studies (anecdotal stories) exist scant recognition of demonstrable benefits are disregarded, the same can be said of LDN, magnetic pulse energy and so on.

Although all of this may appear to be irrelevant as far as CCSVI is concerned it is intended to underscore the point that almost all new and novel therapies receive little or no support, while some have been deliberately denigrated by others. A MS person is “hidden in plain sight” in other words “You’re on your own”

CCSVI may or may not be a causative agent, it may be an underlying condition that adds to or exacerbates MS symptoms, and it may be an entirely separate condition that mimics MS. Nobody has demonstrated what it is except for the fact that it is a mechanical fault within the vascular system.

The furore surrounding CCSVI created business opportunity. Remember it was firstly muted that the procedure was complicated and expert tuition was required before the procedure could be undertaken.

As with any serious intervention it is certainly true that experts are required, however in short order private clinics sprung up offering the procedure, but at a price. Profiteering on the back of the sick and lame has been existence for hundreds of years and still exists today in our so called “civilised society”.

The problem here is that it sets aside people who are unable to afford the procedure (which is the majority) and creates a “them and us” community.

So those who could afford the procedure and others who scraped together money in a desperate effort to undertake the procedure headed for these clinics. The next problem is that we do not know how many failures there are, what real long term benefits have been produced, what actual results every individual experienced. Without data it is difficult to produce a viable picture as to what role CCSVI will play within the MS Community.

There are certainly some people who have experienced a benefit of varying degrees. There are others who have experienced failure and a few who have worsened or been damaged. The few stories concerning those who have died after undergoing the procedure are also difficult to analyse, whether it was because of the procedure, or other reasons is unsure.

Now let’s try a little reality.

Whether CCSVI provides a benefit, palliative or otherwise, or whether it is a causative agent or occurs as an underlying vascular condition that exacerbates MS, the reality is that it is out of reach of the vast majority of MS people.

Should we not be asking some questions?

Why did it take so long for the mainstream MS charities to provide money to undertake research towards CCSVI (don’t forget it is your efforts and money that supports them, isn’t it?). But you could also ask the same question as to why they do not provide a large amount of the money they receive for research into “Cause and Cure”

If expert training is required it is surprising how this was achieved in such short order by private clinics (which profit from the procedure) yet it appears to be impossible to be provided in a health system such as the NHS?  

Now, not everybody with MS will have the condition known as CCSVI and they will not be aware of that fact until they have been scanned, which means that they have had to dig into their pockets and provide large sums of money to undergo, or possibly undergo the CCSVI procedure. There are cases whereby people have travelled large distance only to be told, after being scanned that they do not have a venous problem! This had caused them increasing despair, cost them time money and effort. FOR WHAT? Only to be plunged back into their world of despair.

Surely it would be better if they were reviewed by their local NHS hospital (UK)? Remember it is a venous problem not a neurological problem even if there may be a neurological outcome.

MS people would at the very least be provided with a starting point without having to undergo the stress of extensive travel, possible disappointment, coupled with high cost. (Not everybody has the money or support that others enjoy). Also this would put the procedure within reach of the majority of MS people instead of the minority.

Most of the venous problems in MS people  that have undergone the procedure appear to be ****truncular venous malformations, including azygous stenosis, defective jugular valves and jugular vein aneurysms and some problems with the innominate vein and superior vena cava have been reported to contribute to CCSVI.

****Truncular Venous malformations are present at birth, and grow with the child. At times, malformations will remain dormant and then experience a sudden increase in size during puberty. Isolated malformations tend to be localized to a defined anatomic area, and are not associated with other anomalies.
Symptomatically, it is the location of the venous malformation that determines the nature of the patient's complaints, and the size or extent that determines the severity. Typically, venous malformations present early in life. However, it is not uncommon for venous malformations to present for the first time in the adult patient. There are many case reports that have documented the sudden appearance of a previously unrecognised venous malformation.
This behaviour has been attributed to mechanical or hormonal factors. Pressure or flow changes related to mechanical forces, such as trauma, could reactivate dormant angiopoietic cells and stimulate endothelial cell growth.
The concept (idea) that female hormones can modulate endothelial growth in venous malformations is supported by the higher incidence of venous malformations in female patients and their rapid growth at the onset of puberty and during pregnancy.

If CCSVI is considered to be the cause of MS how does it explain some of the epidemiological findings which include risk factors such as: Epstein-Barr infection, parental ancestry, date of birth and geographic location. MS is also more common in women (between 2:1 and 6:1 dependent on the geographic location), While venous conditions appear to be more common in men.

It is right to support and campaign to enable access to the CCSVI procedure, however it must enable all individuals with a diagnosis of MS to be able to be assessed not just those who can afford it.

Unless the cause or causes of MS are nailed down we will always be going around in circles. And unless MS people join together behind others or become activists under a unifying umbrella there will never be any change to the old system.

If you look at the history of MS and other chronic conditions the charity groups that originally formed to provide support have become large corporate entities, some receive money from “Big Pharna” and many are advised by panels of neurologists. How is that representing people?

It is not a problem for Proventus to campaign, or to be outspoken, but who will join us?

When we talk about campaigning it may provide some idea as to how the people who represent you hold an interest outside of their own agenda.

During 2010 Proventus posted out to every MP in the UK a 94 page book about MS.  Guess how many had the courtesy to acknowledge receipt of these books?

14 acknowledgements of which 5 expressed an interest. That is 14:650 but in reality it is 5:650. (We will publish a complete list soon.

If you think that the mainstream MS charities will campaign for you take a close look at what they actually do, what it costs, how much money is donated to them, how much they pay themselves.

Perhaps the word voluntary organisation or not for profit organisation is a little overplayed.

Unless the MS community gets up as individuals and unite as one voice they will not make change.