CCSVI: The Limits of Placebo January 5, 2013Posted by Beachcombing in : Actualite , trackback
CCSVI is a medical condition that may or that may not explain one of the most mysterious and debilitating illnesses on the planet, Multiple Sclerosis. We look at it here because it is yet another example of a strange-history theme, the difficulty that new knowledge has in emerging against a strong orthodoxy, something that is particularly painful in medicine where human lives are at stake.
First the science or, depending on your point of view, the pseudo-science. CCSVI ‘stands for chronic cerebrospinal venous insufficiency. Basically, this means that there are blockages and narrowing of some of the most important veins that drain the blood from the brain (and rest of the central nervous system) back to the heart.’ This might seem like a rather tedious cul-de-sac in vascular medicine. But it has, since 2008, been pushed by an Italian doctor Paolo Zamboni (Ferrara: pictured above) in explaining the onset of MS.
According to Dr. Zamboni and others, this slow or reversed blood flow leads to iron deposits and autoimmune activity, which (according to this theory) accounts for the lesions [wounds] that are found in the brains and spinal cords of people with MS.
Zamboni’s explanation, it goes without saying, runs against all the text-books in which MS is cast as an overenthusiastic immune system chewing, damaging and finally destroying nerve centres.
The point is not just an academic one. If Zamboni is right then it should be possible to relieve some of the effects of MS, perhaps even reverse the illness, by working on these veins. To this end, Zamboni came up with what he termed ‘the liberation therapy’ (a poorly judged and provocative term?) where veins are expanded by stents or temporary balloons. By now thousands have taken this treatment. There are also a number of studies, most contradicting Zamboni’s findings.
So what is the state of play in 2012, four years after treatment began? MS is dealt with by neurologists, nervous system experts and it is fair to say that neurologists are almost totally against the new treatment. The more ‘liberal’ wing of the discipline state that patients should wait until proper studies have been carried out, expecting these studies to be negative. (For someone with a rapidly degenerating MS condition this is questionable advice…) More mainstream neurologists condemn Zamboni’s research outright, not least because the procedure costs around 10,000 dollars.
Sufferers, however, have sometimes had different experiences. Broadly speaking those who have undergone the treatment have fallen into three categories. Those who have not seen any changes: though who may have benefited from a reduction in relapses. Those who have seen changes in their lives but whose symptoms have slowly returned after several months. And those who have seen permanent improvements (as this treatment is only four years old, who knows), some being able, for example, to stroll unassisted again. A random example from post CCSVI treatment:
X is doing very well, the improvements really started to show up after the lovenox (blood thinner) cleared her system…. her balance is much better…she now walks up & down the stairs without holding on to the wall or railing for balance. She drove for the first time in 5 years yesterday… she is not having headaches as much, becoming less frequent and less severe all the time.
Much of this has been written off as ‘placebo’ by sceptical neurologists. If they are right then placebo may be the miracle cure that many MS patients have been waiting for…
The dissonance between neurologists and MS-ers is more painful than a similar dissonance would be say between an oncologist and a patient. We say this because many MS patients loathed their neurologists long before CCSVI. And this innovation produced more unwelcome tension in an already fraught relationship, a relationship which can easily last thirty years: MS is a progressive, life-long disease. Why? Well, neurologists often (i) lose their authority in the phase of diagnosis, because diagnosis is so tricky and so many get it wrong. (ii) Neurologists have failed to treat MS in a convincing fashion, despite steps forward in the last forty years. (iii) The medicine on offer for MS has often horrible side effects and has few demonstrable results and this ‘rat poison’ is doled out, of course, on the order and in some cases at the whim of neurologists. Then (iv) there is also the fact that neurologists tend to be rather cerebral – they are cruelly caricatured as ‘cold fish’ – and, perhaps because of the horrors they treat, they keep a professional distance from their patients.
The reluctance of neurologists to listen to patient’s experiences with liberation treatment was always going to be dangerous and it has led to some claims that neurologists are ‘in bed’ with the big pharmaceutical companies. Having known several neurologists in my time I can’t take this last accusation very seriously, though the reasons noted above for difficult doctor-patient relations are more difficult to nod away. But the anger that the whole ‘liberation’ question has brought up has to be read to be believed. Go to any discussion forum and just soak up the rage as different sides take bites out of each other. Its effect in waiting rooms has also been striking. There has been a full on ‘peasants’ revolt’, with patients stepping outside the normal treatments given by their neurologists and looking for solutions on their own. Is this a good thing? Well, that will depend on your views of the efficacy of alternative and conventional treatments, another can of worms.
And as to CCSVI: does it work? Several months ago I accompanied (the cost of knowing Italian) a family member to a clinic in Italy to undergo a provisional test for ‘liberation’. Perhaps the most interesting thing to come out of the visit was a conversation with the vascular doctor post the test.
The doctor confided that he had, originally, been sceptical of the connection between veins and MS but that he had been slowly convinced by the results in his clinic. He estimated that 84% of those with MS who had come to him (just under 800) had CCSVI, a number far higher than the general population. He suggested that the reason that so many other studies have not turned up these numbers is that ‘you have to know what you are looking for’ and that the initial blood survey is complicated. He didn’t know whether CCSVI caused or was caused by MS (obviously a crucial distinction). But he had become convinced that symptoms were relieved by treating the condition. Yes, the treatment is expensive but then so is treatment for the medicines that MS-ers use with such mixed results. He finished by saying that ‘time is Lord’ something like our English ‘truth is the daughter of time’: over time the truth will out… Incidentally, the family member was not in the 84%. The doctor was not hardselling, there was no money to be made. He was just passing the time of day while we waited for a print out. He seemed a nice guy and did not have any blue crystals or tarot cards on his desk.
There is the suspicion that something useful has been found here – though who knows whether it is a bit of chain armour or a magic bullet made of pure silver. The finding though has come up in the wrong discipline. If this had been a neurological discovery related to a neurological condition then things may have gone a lot more smoothly: after all, there would have been no paradigm-shift and no red faces. It would be an awful tragedy if limited human categories get in the way of solutions or relief to one of the most ghastly illnesses to haunt our species. But then if they do it certainly won’t be the first time…
Other examples of medical treatments that ‘take time’: drbeachcombing AT yahoo DOT com
22 Jan 2012: The great KR writes in with this: You asked about other discoveries in medicine that were not accepted at first. Dr. Barry Marshall of Australia discovered that Helicobacter pylori bacteria were causative for stomach cancer and also stomach ulcers. His work was not taken seriously, especially by gastroenterologists who were making a good portion of their living looking into stomachs and prescribing drugs and diets, and telling patients that stress was the major cause. Also Big Pharma had medicines they were selling to “reduce acid” and others to “reduce stress.” (In addition, he was an Australian instead of European, British or American.) Dr. Marshall then himself a guinea pig. He did this by having a stomach biopsy done to prove that he did not have H.pylori in his stomach, then by drinking a culture of H.pylori and then having himself cultured when he had symptoms: H. Pylori grew in his culture. Antibiotics cured his gastritis. Eventually his work was taken seriously, and years later he received a Nobel prize. The story is longer than my brief synopsis, and it included Pathologist Robert Warren, who began the whole theory from his findings in post-mortem examinations. The link here is a bit long, but it is in his own words, so it is the link I am sending. Then AB with some more general thoughts.’Presumably you’re aware of the Fauja Singh saga the turbanned centenarian [+] Asian guy who ran the marathon.At the time I found myself on a medical forum full of all these doctors from all over the world discussing him and they all kept repeating mantras to the effect he was a freak or a one off or the exception that proved the rule or a hoax etc etc but this one particular Brit doc kept rabidly calling for a stop to be put to him and for the people exploiting him to be arrested or for some sort of ban to be enforced in the interests of preserving any last vestige of health which might remain to him at which point some of the others started backtracking and saying it clearly gave him a reason to live and forcing him to stop might actually harm him especially since the reason he took up the activity in his seventies or eighties in the first place was as a way of coping with depression resulting from his wife and kid dying.Besides others added he was an inspiration to the rest of us young whippersnappers to get off our arses. It was at this point the Brit doc said all he knew was he was suddenly being snowed under by a huge increase in his workload of agitated patients in their forties and fifties all demanding to know why they weren’t able to run the marathon and wanting to come off their medication and demanding he provide them with exercise regimes to get them fit again at which point he added he then had to calm them down and convince them all over again to accept the fact they’re getting on in years and face a bleak future of permanent terminal decline from which there’s no possible recovery. It reminded me of one of the first things I read when I first went on the internet circa the Millennium which was this old American jewish doctor telling how he’d attend medical conferences only to have other much younger doctors literally lift him up by his lapels and slam him against the wall for threatening their ability to earn sufficient funds to raise a family and send their kids to college all because he was writing books which claimed rather than curing or healing people much of what doctors do is actually train them how to be sick so for instance you go in with a odd pain in your finger and from then on they’ll spend years filling you with a sequence of ever more powerful meds for arthritis all the time coaching you to exhibit the expected signs of fingers stiffening and curling up until finally theyll be reduced to calcined cudgels at the ends of your wrists [the nocebo effect of course].The new one of course’s senility and people like me in my teens and my teenage daughter now aren’t merely scatty but incipient vegetable dribblers to-be even though much of the symptology associated with blackouts and scattinesses’re explained by various mystical systems as a misunderstood attempts by our original true minds to get out from under the unbearable welter of conceptual existence we mistake for life.’ Thanks KR and AB!!!!