Both Sides Now

The second day of the conference dawned, sunny and early, and closed with an attitude of hopeful optimism. One of the most interesting experiences at the Lyme Disease Framework Conference today was listening to 4 experts in various fields shed light on progress and problems with Lyme disease testing and diagnosis. This is certainly the ‘hot-button’ topic of the conference, and of the controversy in general, but I came away with pride in the mostly respectful interactions that occurred. A few years ago, the polarizing climate of anger would have made these talk downright impossible. We’ve moved forward as a collective. And that’s encouraging to see. there was so much to digest today, but I feel like after so many years of hitting brick walls, we are finally on the road to change.

It was an extremely productive day but a draining one. Kindly walk past my absurd grammar mistakes and typos. Nothing to see there ;). I am so beyond exhausted, but wanted to throw down a few thoughts before getting up tomorrow to attend the final day, where we will be making extremely important suggestions for the framework.

The conference moderator Mr. Normandeau set the tone by encouraging us “to be hard on the issues and soft on the people”. His summation of the points patients and advocates raised last night when we briefly shared our stories was on point.

opening remarks from Mr. Normandeau

We as a community have every right to be angry, to be furious at the systemic problems and physicians that left so many patients untreated or reeling from misdiagnoses. The conference is not the time to vent that 27+ year anger, but channel those emotions into more productive areas. But today for the most part, we set aside our (surface) anger to focus on the task at hand. It got tense. At one point, Dr. Bowie said during the course of the afternoon that if a certain proposed clinical trial was done, he would “throw a fit”. Many Lyme patients would have had just justifiably thrown a fit over other issues 😉 , but thankfully we mostly kept our collective cool. Dr Maloney responded with a quick comeback:

It was certainly eye-opening to hear “familiar” research cited as against the argument of the persistence of Lyme disease post-treatment, and to hear studies about which I’ve read many articles examining their shortcomings be presented as definitive. I was at first frustrated. The bias was palpable. And then I recalled one of the first lessons I learned in history class; that identifying bias is far from a negative thing; everyone has bias, and it tells us where the author is coming from, and neutrally acknowledging bias helps place their comments in context. When examining information from biased sources (and we’re all biased) it’s key to focus on what the differing points are. Once I reshuffled my thinking, I found I learned a great deal about what we might call the CDC/IDSA stance on Lyme disease.

Judging only from what I heard today, and trying to detach myself from my personal bias of 8+ years of background knowledge, I heard these doctors and researchers express their concerns over efficacy of long-term antibiotics [based on research they believed credible (even though many admitted short-comings in the research, which ranged from data collected at uneven times, small control group, and too small a ‘cohort’)], the side effects, the need for more research and the dangers of diagnosing someone with a disease they may not have. Okay, fair enough concerns. However, if you’re a Lyme patient, you feel a sense of urgency to do something, so you don’t get sicker. I recognize that this isn’t something you can understand until to feel the infection in your bones. I wish the issue of informed consent for treating patients longer had come up. I was confused because of the back-and-forth conflicting information on whether or not Lyme disease needs to be a ‘clinical diagnosis’ or not, and what the criteria would be. Arg.

Their were high points and low points in the day. The audience was rightfully outraged when Dr. Patrick of the BCCDC, in response to a question from an audience member said he didn’t want doctors making a hocus pocus 19th century-style clinical diagnosis. Whatevadafuck that’s supposed to mean. I found it quite shocking, personally.

Without commenting on the genuineness of their surprise, the CDC/IDSA-supportors seemed to be disbelieving that patients with an erythema migrans (or ‘bull’s eye rash’) wouldn’t be given treatment in a doctors office, or were required to do testing first (which all parties agree is very inaccurate in early stages). They seemed surprised when multiple patients shared similar experiences. And made it very very clear that the “guidelines were just guidelines” and even expressed confusion why the Lyme disease community was insinuating that doctors needed to treat them “like they were set in stone”? Is it possible they were unaware that there was at least one doctor in the crowd who’d been forced into retirement because they dared to treat ‘outside the guidelines’, or that there are a whole host of physicians who have closed their practice for similar reasons? Curious-er and curious-er.  It made it clear to me just how critical it is for all stakeholders to come together for this conference; so we can lay all our concerns on the table, and find common ground. Building suggestions for the framework begins tomorrow, and I expect that will be h.e.a.t.e.d.

I swear in the 7 hours I was there, we collectively agreed on things, most importantly that patients are suffering, and it needs to be addressed now. There’s no quick fix, and I came into this knowing and expecting that. We have work ahead of us. The hardest work begins after the Framework is release: getting the Provinces to implement it. But that’s a battle for the future. One bridge at a time.

Depending on my energy, I’ll be tweeting from the conference. You may have noticed my innate wordiness which I battle in every sentence, so you can imagine sticking to 140 characters was a challenge. I’m at @nbandlyme and in case you’re  wanted to join the convo, the hashtag is #lymeconference.

See you all bright and early tomorrow for the culmination of almost 4 years of hard work bringing bill C442, Federal Framework on Lyme Disease Act, into law. Well done, team. Special shout-out to Elizabeth May for making this possible, and giving hope to so many. <3

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