Interest Ebbs as Science Weakens for "Liberation Treatment"

My latest Calgary Herald column:

A recent admission from the New Brunswick government would seem to be indicative of a much broader waning of interest in the so-called liberation treatment for multiple sclerosis.
In 2009, Italian surgeon Paolo Zamboni published research suggesting that blocked neck veins (a condition dubbed CCSVI) caused MS and that removing those blockages (the liberation treatment) would reduce or even eliminate MS symptoms.
Amid the resulting clamour, New Brunswick offered to pay for patients to go abroad and have this unproven treatment. In the first four months, only 25 people were approved. The government says there have been no applications in the past two months.
While it’s difficult to pin down the exact reasons, it may have something to do with the fact that several studies have now been published casting great doubt on the validity of the CCSVI theory.
In fact, several studies have been published in the past few years that have failed to duplicate Zamboni’s findings. Many have shown a low prevalence of CCSVI in MS sufferers and an often equal prevalence of the condition among those without MS.
We see such findings yet again in research published last month that found no statistical difference in CCSVI prevalence among those with MS as compared to those without.
But more significant has been the first published results from a clinical trial at the University of Buffalo into liberation treatment. The results show that the procedure did not improve patient outcomes, and in some cases, actually made symptoms worse.
As the researchers note, this is not and should not be the final word on CCSVI, but it should certainly prompt a rethink on those who bought into the initial hype and acted as though Zamboni’s research was the final word.
While the Liberal leadership candidates have avoided the matter, others in the party — in particular, MPs Kirsty Duncan and Carolyn Bennett — have been vocal. Duncan was behind a defeated private member’s bill to establish a national CCSVI strategy, and has been harshly critical of what would appear to be a lack of enthusiasm on the government’s part for the theory and the procedure.
While the government’s apprehension may now prove to have been completely justified, it did still move to establish a Canadian clinical trial and patient registry.
Meanwhile, there has been nothing from either Duncan or Bennett acknowledging this new published research or admitting that their own enthusiasm may have been premature and misplaced.
The dwindling enthusiasm among politicians has corresponded with a similar drop in interest on the part of the media, though it’s unclear which has led to the other.
It is certainly true that many in the media presented Zamboni’s findings with great enthusiasm and a glaring lack of skepticism. It’s not unfair to say that the coverage played a major role in the attention from politicians and the fact that so many MS patients sought out the procedure.
By creating a narrative around Zamboni as a saviour to those with MS, we blinded ourselves to other research in this area and, by extension, misinformed the public about the state of MS research.
We now have, for example, the potential of a major new breakthrough in treating MS that might give us another opportunity to get the story right. It’s a study that’s been ongoing in Canada for over a decade now. Parts have been published, including a study last month, and it’s hoped that the entire research will be published soon.
It involves MS patients for whom traditional drug therapies have proven ineffective and instead employs a riskier approach with chemotherapy and bone marrow transplants. Essentially, researchers were rebooting the immune system with the hope of watching how the disease returns. But the disease didn’t return, which was an enormous and unexpected surprise.
Researchers are being cautious so far, and want to make sure everything is in order for when the final results are published. There is potentially much to be learned about MS from this study, but many questions remain.
Hopefully, though, as the case weakens for CCSVI and the evidence around MS takes us in different directions, we’ll all have learned some important lessons from the past few years.
(Note: you'll find links to the aforementioned studies here and here)