The treatment of CCSVI is something which neurologists have almost no specialised training for. They claim that they have substantial experience in the vasculature of the brain, but this is a half-truth. The whole truth is that almost nobody has studied the veins of the brain because all the attention has been focused on the arteries, which cause strokes. CCSVI was discovered precisely because there was so little research done on the veins draining the brain.
Neurologists should obviously be treating the damage caused by MS. Nobody sane argues that the neurons are undamaged by MS, and clearly a neuron doctor is going to be in the best position to help restore function to those debilitated by MS. But CCSVI is a vascular issue, and it happens a long way (topologically, and often actually) from the neurons in the brain.
So why are neurologists being invited to comment on CCSVI studies?
The obvious answer is that neurologists are trained to understand the symptoms of MS and are in the best position to determine if treatment for CCSVI is an effective treatment for MS. They have a legitimate advisory role in CCSVI studies and I think it’s not just reasonable but desirable for them to be involved at this level.
But some are vociferously opposed to CCSVI studies - and even the possibility that CCSVI might cause MS, and this is problematic. Neurologists have no special, magical knowledge of the effectiveness of CCSVI. Nobody knows, scientifically, if CCSVI is the cause of MS, which is why we need studies in the first place. Simply saying that there can’t possibly be a link is not - even a little bit - scientific.
And this is why the role of neurologists should be restricted to measuring the efficacy of previously approved CCSVI studies - and nothing more.
In particular, neurologists and MS researchers have no legitimate role in the ethical standards used to determine if a CCSVI trial should go ahead. These people have a conflict of interest - their careers are based on a model that’s incompatible with CCSVI, and this lifelong exposure to one particular paradigm is almost certainly going to affect their judgement.
If CCSVI trials go ahead and it is found that CCSVI is not related to MS - and this is an extremely unlikely outcome - then neurologists will have their moment in the sun, jumping up and down with joy knowing that they were right all along, and that MS is still incurable, and that we’re all screwed.
But if CCSVI is found to be a symptom of MS - that is, it’s found to be noncausal but is strongly associated - then it becomes another mystery of MS which moves the disease out of the brain and into somewhere a bit easier to study. This is hardly a bad outcome.
And if CCSVI turns out to be the underlying cause of MS, then the present schoolyard behaviour of neurologists puts at risk the prestige of their profession. This will go down in history as the neurologist’s ulcer.
Neurologists are a necessary part of CCSVI research, but they have no right to act as a gatekeeper to their patients’ wellbeing by using ethics committees or any other means to force their opinions - and any neurologist talking about CCSVI is simply voicing an unsubstantiated opinion - onto anyone else. Their role in CCSVI is advisory, and it is in our best interests to ensure that we keep them there.
