Thinking Critically - Ticked off by flawed Lyme disease bill

Elizabeth May, federal Green Party leader and MP for Saanich-Gulf Islands in B.C., wants Canada to do a lot better at preventing, diagnosing, treating and providing ongoing support for victims of Lyme disease.

While May’s private member’s bill received all-party support and easily passed the House of Commons and the Senate, it has raised the ire of infectious disease experts. Specifically, the Association of Medical Microbiology and Infectious Diseases (AMMI) Canada objected to parts of the preamble of the proposed legislation.

First, it appears to endorse controversial guidelines from the Lyme patient advocacy group International Lyme and Associated Diseases Society (ILADS), which advocates the existence of chronic Lyme disease despite contrary evidence.

It also appears to denigrate the current official Canadian guidelines based on those established by the Infectious Diseases Society of America (IDSA), the American Equivalent of AMMI.

The Centers for Disease Control (CDC) does not recognize chronic Lyme and the United Kingdom’s Health Protection Agency (UKHPA) recently concluded the ILADS guidelines were not evidence-based and poorly constructed overall.

If ever there was a disease that would make me abandon my principle of evaluating things on the basis of the best available evidence, it is Lyme disease.

There is no controversy about the disease itself, it is well-understood and treatable. There have been problems with diagnosis, especially in places, such as western Canada, where many doctors have never encountered it, or, if they have, only recently as the ticks that carry it have spread across the continent.

Unfortunately, a small minority of health care providers, who have built a massive for-profit industry around chronic Lyme, and a growing number of victims, has bought into the idea they are suffering from a chronic infection.

I have been personally affected by this horrible tick-borne illness and from what I have seen, it would be easy to make the mistake of assuming correlation equals causation and jump on the chronic Lyme bandwagon. I cannot, however, because I do not ascribe to the theory that the most reliable medical authorities are involved in a conspiracy to keep the truth from poor chronic Lyme sufferers. I have to go with the AMMI, IDSA, CDC and UKHPA on this one.

Those organizations do recognize that Lyme can cause ongoing symptoms and, as I said, I have personal experience with it—not that my anecdotal experience counts as evidence. It is called Post-Treatment Lyme Disease Syndrome (PTLDS).

May denies her bill opens the door for quackery. “This is an attempt on my part to be completely non-partisan and also not to take sides on the heated debate about whether there’s such a thing as chronic Lyme or whether there’s post-Lyme syndrome,” she told the Canadian Press.

The problem is, May is taking sides. By sitting on the fence, she is lending credence where it is not warranted. All opinions are not created equal. Furthermore, if you look beyond the bill, it appears May has been drinking the chronic Lyme Kool-Aid.

“We need to supplement the efforts made by groups like the Canadian Lyme Disease Foundation (CLDF),” she writes on her MP website.

The CLDF is Canada’s version of ILADS. In fact, it heavily promote ILADS conferences and events on the CLDF website and advise patients on how to live with chronic Lyme.

So, why am I splitting hairs over what we call it? It should be enough that one is based on actual evidence and the other is a fiction, but there are also practical reasons.

The meat of the bill includes the following directive:

“The Minister must, no later than 12 months after the day on which this Act comes into force, convene a conference with the provincial and territorial ministers and stakeholders, including representatives of the medical community and patients’ groups, for the purpose of developing a comprehensive federal framework....”

Basically, Parliament has already invited these anti-science lobby groups to the table by passing the bill. And I can’t imagine the Queen will send it back for revision.

I agree that patients should be part of the process, but ultimately good policy must be designed based on the best available evidence, not on how loud your lobby group is. What is next? Are we going to invite acupuncturists, homeopaths and reiki masters to the party to muddy the waters as much as possible.

All in all, AMMI Canada is behind the establishment of May’s National Lyme Disease Strategy. I am too. I am just really disappointed in her, and all the national parties, for writing and passing a law that, perhaps inadvertently, leaves Canadians vulnerable to a mediocre framework based on political compromise versus scientific principles.

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