Although there are a number of people on MS Friends who have very strong views and sometimes are not thinking straight, and we all know what MS can do to our emotions and thinking processes, and I would personally distance myself from these extreme views, I am writing in this forum that I do not frequent very often to state a few facts.
The woman who wrote the book, “MS as the cause of Multiple Sclerosis - The Science Behind the Controversial Theory” is Marie Rhodes, and if you take the trouble to read the book you will see that it is very even handed and explains the science behind both the vascular theory (which has 150 years of history behind it and recently convincing evidence from a few researchers such as Prineas and Barnett: http://www.ncbi.nlm.nih.gov/pubmed/15048884 ) and the neurological theory based on the EAE model. And far from making any money from it she is still considerably out of pocket. It would be good if more people would read the book because there is no hype in it and it sensibly explains the situation as it stands.
Secondly, any sensible person or non commercial website will let you know that CCSVI treatment cannot be claimed to be a cure for MS. If treated early enough and consistently enough people suffering from CCSVI may avoid the more debilitating deterioration that comes from MS. About a third of people treated do very well, a third get moderate results and a third do not see any improvement at all. Until we can understand what this means through research and good records of people treated it is difficult to say that this can be a “cure”. However CCSVI treatment is at least as effective as the drugs prescribed for MS which also are not effective for all people, and considerably less dangerous than a couple of the drugs currently prescribed such as Tysabri and Gilenya. Only three people have died out of 30,000/35,000 treated for CCSVI whereas 52 have died of Tysabri and over 200 been affected by PML (out of 95,000 treated) and 15 due to Gilenya (maybe more due to side effects such as depression leading to suicide), I can’t find figures for how many people are taking it so can’t tell how dangerous it is. What is certainly unfair and what makes a lot of people with MS who have researched CCSVI angry is the way in which neurologists (and now the FDA) who prescribe/condone/authorise these drugs talk about CCSVI treatment as being very dangerous. Angioplasty for CCSVI is even less dangerous for people with MS than it is for the patients who undergo this procedure for other conditions. The NHS deems 1% of death as an acceptable risk for angioplasty for heart/vascular patients, the rate of death in MS patients treated is one in a 1000.
There is an economic/political element to the treatment of Multiple Sclerosis… There is a lot of money at stake both for the pharmaceutical companies and for the government/s, probably also in an indirect way for the MS Society. The pharmaceutical industry is the third largest contributor to the national purse inthe UK and it is understandable that the government is unwilling to rock the boat. The pharmaceutical companies do not want MS (or cancer for that matter) “cured” or treated with non medication means, because there is money in the “market”, as they recently called the patients at the MS Life event in Manchester (May 2011). Researching this aspect of the debate recently, I came across the abstracts of a conference in Toronto on the power of business, it appears from this that whereas we are lead to believe that the development of drugs is what makes these drugs so expensive (£15 to 20 thousands a year per person) is the development and trials, whereas it appears that marketing is the largest expense incurred. Which means that the NHS and ultimately the tax payers are paying for the marketing of drugs that often are not terribly effective, can have dangerous side effects and additionally are quite expensive.
“Producing the right medical discourse through massive promotional campaigns has become central in developing “blockbuster drugs”, even when these drugs are in fact less efficacious than previous ones. After measuring profits and innovation in the pharmaceutical sector, the presentation will show that promotion expenditure dwarfs research and development.”
There is much that still needs to be learnt about CCSVI and the venous aspect of the circulation in the brain, it could be that there is also an arterial aspect too, as it appears that people with MS have slow circulation in their brain (could be the result of not enough blood reaching the brain or blood being slow at leaving it: http://radiology.rsna.org/content/262/3/947.abstract ). This means not enough oxygen with all that means for brain function. But as there is no actual proof that MS is an auto-immune disease, what the CCSVI theory is doing is opening up research into this dreadful disease and hopefully putting the auto-immune theory in its place as a possible amongst quite a few other possibilities.