Caution, Not Hype, Needed on MS Claims

You may have heard about the sensational claims by an Italian researcher about a possible cause of - and a possible cure for - multiple sclerosis.

 

Given all the attention these claims are receiving, this response is completely unsurprising: 

A fast, easy cure for multiple sclerosis has been found, but Canadian health officials won't let MS victims have it, protesters said Wednesday on Parliament Hill.

About 200 people, many in wheelchairs, called on the federal government to get behind a new treatment they believe can cure the degenerative disease.

"I feel like (health officials) are dangling my life in front of me, and laughing, 'Can't have it! Can't have it!'" said Christin Benoit, her voice trembling as she spoke to the crowd from her wheelchair.

(...)
Italian vascular surgeon Paolo Zamboni found that 90 per cent of MS patients in his 2008 study had malformed or blocked veins that could not adequately drain blood from the brain.

 

 

While there is an understandable impatience on the part of those suffering with MS, one might expect a little more prudence from politicians. Unfortunately, that's not the case: 

Two Liberal MPs are calling on Ottawa to provide $10 million in funding for research on a potential cause of multiple sclerosis: chronic cerebrospinal venous insufficiency.

Liberal public health critic Dr. Carolyn Bennett and Liberal health critic Dr. Kirsty Duncan wrote an open letter to Minister of Health Leona Aglukkaq. In it, they ask the government to intervene in the growing national debate over whether MS patients should be tested and treated for a novel vein disorder known by the acronym CCSVI.

 

 

Back in February, we spoke with Dr. Mark Freedman, one of Canada's leading MS experts - you can listen to that interview via the audio player at right. He outlines a number of serious problems with Dr. Zamboni's research and a number of risks associated with Zamboni's treatment.

 

More here: 

Dr. Zamboni and colleagues should certainly not be recommending at this point that patients undergo the diagnosis or treatment outside of a clinical trial, said Dr. Mark Freedman, a neurologist at the Ottawa Hospital.

“That is completely irresponsible,” he said in an interview.

(...)
Such symptoms are all subjective, however, and the changes could have been triggered by the placebo effect, said Dr. Freedman. Regardless, the Polish and Jordanian results have yet to be published in a peer-reviewed journal.

And here:

 

The “liberation procedure,” a controversial new surgical procedure that appears to cure multiple sclerosis, is based on circumstantial evidence and MS sufferers should not rush into getting it.

That was the message delivered by Dr. Mark Freedman, director of the MS research unit at The Ottawa Hospital, during an education session hosted by the MS Society of Ottawa on Tuesday night. For many in the audience, his words dashed much of their newfound hope. (...)

 

However, Freedman, like many neurologists, is skeptical. During his presentation, Freedman said he confronted Zamboni at a recent meeting in Lisbon.

“He was there presenting some of his data and had a hard time answering any of the questions from the MS guys,” Freedman said. Among their concerns was Zamboni’s claim that the clogged veins are present at birth, yet no studies had been done on children. Zamboni had not done animal studies, either.

“I said, ‘Why don’t you tie off a few of the blood vessels in animals and see if they develop MS?’ His answer was, ‘I’m not a mouse researcher’,” Freedman said.

“If his observation stands up to other people being able to reproduce it,” Freedman said, “I think we’re going to have something of interest to chase, but we need to have the supporting evidence before we start reaming out blood vessels and pretending that this is going to cure the disease.”

 

In other words, Dr. Freedman and others in the field are open to the possibility that Dr. Zamboni's ideas have merit. They're awaiting - as any responsible scientist would - more scientific evidence. Besides, it's not as though further research isn't ongoing.

 

But all the media coverage - so much of it unquestioning when it comes to Dr. Zamboni's claims - is no doubt partly responsible for the demand that people have immediate access to Zamboni's treatment and that the government pay for it.

 

National Post columnist Terence Corcoan has harsh words for many in the media: 

...However preliminary and hypothetical, it was good enough for W5 and The Globe and Mail, whose sensationalism distorted the science and planted seeds of hope where none was yet warranted. In their hands, helped by Dr. Zamboni himself, a bit of preliminary scientific research became a probable cure. To participate in the miracle, MS sufferers were encouraged by W5’s Avis Favaro to contact their MS societies, put pressure on clinics to push funding, and line up an MRI to get their veins tested.
It became more about the politics of MS than the science. For MS patients, the Zamboni vein-opening procedure “stops MS whenever they are treated.” CTV told viewers they should “let the MS Society know this is something they want pursued.”

(...)

As science journalism goes, the Zamboni MS stories were typical manifestations of junk science — the abuse of science fact via oversimplification, distortion and exaggeration of risk, often to serve some political end.

More here and here.

 

It's also worth noting what the National MS Society says: 

Q: I have MS. Should I be tested for signs of CCSVI?
A: This is a personal decision to be discussed with your health care provider. At this point, no connection has been confirmed between CCSVI and multiple sclerosis, in fact, CCSVI appears to occur in many people who don’t have MS.