CCSV Why? Multiple sclerosis and those ‘other’ treatments.

I run a Multiple Sclerosis clinic and I am running a small scale observational study in my head. The aim is straight forward: to monitor the fluctuating fortunes of the various treatments that are viewed by MS patients and their families as ‘cures’ for MS. None of the treatments have anything to do with big Pharma and yet discussion of these ‘treatments’ consumes an almost equal proportion of time in the consultation. The major players in this arena are CCSVI (chronic cerebrospinal venous insufficiency, for those readers who have only recently returned from Mars and are therefore fortunate enough to have never heard this term before), stem cells, extremely high dose vitamin D therapy and a range of dietary strategies.

At present, CCSVI is on the way down. By that I mean, hardly anyone is asking and even previously ardent followers realise that is very passé. I am not sure why they are despondent as the majority of the world’s Facebook pages still seem to be dedicated to ensuring its survival. May be it has something to do with the fact that a lot of patients who would have opted for CCSVI have very little time on their hands as they are now spending most of their days taking vitamin D. I have a patient who asked me whether I would advise 100,000 or 150,000 IU of vitamin D, a dosage that is x30 more than recommended! Then there are the patients who have flown to centres in Asia for stem cell treatments, ~$30000 I am told to get in the front door. Many of my own patients who have explored this are not physically disabled, but disabled by the extreme anxiety that one day they will be physically disabled. They are ‘well’, they have paid off their mortgage once and they are now about to start paying it off a second time.

Ultimately, the question really is why? Why pay for stem cell treatments in areas of the world where there is not regulation? Why undertake a procedure that has been popularised in the media? I think the answer comes down to the fundamentals of the doctor-patient relationship. It hinges largely on how we counsel our patients. Driving patients towards pharmacological treatments often results in the opposite effect, with patients becoming suspicious of motives. By way of example, a recent story on the Australian national public broadcaster, the ABC, questioned the benefits of statin treatments for cardiovascular disease, leading to a great many patients stopping statin treatment. The view amongst a large part of the community is that prescribing drugs is one of the great frauds of modern times.

What do we do as doctors? The way to prevent this surely is to at least demonstrate to patients that the basis for the current treatments in MS does not reflect a pre-emptive strike against all non-pharmacological treatments, but rather is a commentary on the current state of available evidence. There are no cures for MS and it helps if doctors at least appear to have a balanced view on what disease-modifying drugs can achieve and, possibly more importantly, what they do not achieve (i.e a cure). The other issue clearly relates to safety. I tell patients that if the medication I am about to prescribe results in serious side effects, then there are protocols and procedures that are in place to deal with the problem in a sensible and timely manner. If they are contemplating non-pharmacological treatment, then they owe it to themselves to ensure that the same level of evidence exists for those treatments as it does for all current disease-modifying drugs. At present however, it does not and sadly, there are too many desperate patients who don’t really care.

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