2016 Lyme disease conference summary/discussion and closing remarks

Conference to develop a federal framework on Lyme disease

May 15-17, 2016, Government of Canada Conference Centre, 111 Sussex Drive, Ottawa, ON

Conference day 3: Tuesday May 17, 2016

Audio Recording


Dan: [00:00:11] All right, WebEx operator. If you could tee up our participants on WebEx.

We're going to begin.

Karaoke's at 5 o'clock, by the way, for those of you who are interested.

Okay. Good afternoon. Good afternoon.

We've been together for almost two and a half days, and you've all worked hard. We've all worked hard: the organizers, you as participants, the facilitators. And I think the facilitators need a really big hand of applause here, having brought this together as well.

Thanks for applauding now because you can't boo after the presentations, okay? So, we got you. Just kidding. This afternoon should answer three questions for all of us.

One, "What really happened at this conference? What were the key ideas that were generated?" And we'll have the facilitators report on those, but some of you might feel, "Well, based on what we heard, and we weren't in that group, we think there should be other things that should be considered, too."

So, as soon as they've finished presenting, I'm going to open the floor and, of course, access our WebEx participants, to ask you if there's anything missing from what you've heard. And we'll invite you to do that. Of course, we have 120 minutes to do that, and that's an average of about 40 minutes per theme, right, which were we're going to try to respect, because at 3 o'clock, I'd like to invite the tri-chairs to close this. So, they can share their impressions with you as well as talk to you about the specific next steps.

"Where does this process go from here?" Plus, "How do we engage? How can we stay involved? How can we be part of the solution?" Everybody in this room wants to be part of the solution, right? Whatever you do, whatever you do.

So, we're going to try to answer those questions, and some answers that we actually might even provide ourselves, might not be as clear as they could be, and that's the work that needs to be done beyond this conference. You don't solve a tough problem like this in one conference, but you lay the foundation and bring the voices in and consider what it is that you've contributed and put together that leads to something that's going to improve how we do this. That's what this conference has really been all about.

So, this afternoon, again, we'll have a presentation, open the floor to questions. We have the overflow room. We have WebEx participants. Get your ideas, we'll note them all. By the way, the other thing I want to say is, I think on most tables, there's a pad of paper. If we run out of time, and there's a line-up of 22 people at the mics, I'm going to have to say, "Sorry," because we're going to run out of time, but I'm going to ask you to note your ideas. There's going to be a box on your way out that is going to actually be the box in which you can put those ideas in, and they will be noted, okay?

Female: (Inaudible).

Dan: So-excuse me?

Female: (Inaudible).

Dan: Print neatly. Absolutely, thank you for that.

So, if we run out of time, that's Plan B, okay? But if we have the time, we'll input and invite your voices to share your views directly. Now as many of my colleague facilitators have shared with you in the breakouts, when you have something to add, in the spirit of trying to get as many voices as possible, be as sharp, brief, and concise as you can be, okay? Because we also have note-takers who are noting everything that you're saying, all right? So, try to be as brief, concise as possible.

So, that's our afternoon, and we hope to get you out of here by 3:30. We know that there's a shuttle leaving for the airport at that time, and you know, we have planes, boats, and-how does-trains, and however else you're getting home to your loved ones.

So that said, we'll use this afternoon to really see the result of this conference, the ideas that emerged that you suggested. For those who did not participate in the sessions - in all the sessions, you'll hear this. If you have perspectives to share beyond what was said, they will be welcome. We will invite your ideas, we will note them and they will be part of - of the conversation we have had over the past two and a half days.

Without further ado, we will start with surveillance, followed with guidelines and best practices. We will end the afternoon with education and awareness.

Ladies and gentlemen, Alain Rabeau.

Alain: [00:05:27] Thank you, Daniel.

As Daniel prepared the afternoon this morning, we said we would ask two questions: what does success look like, and what do we need to do to move toward this success? I asked a previous question to find out if there were additional points to raise on the current state, the present state in terms of surveillance. And what - is comical...

Dan: How's that? 1-2-3. I can't. I'm going to have to bend over. And it wasn't like that this morning. How's that? No?

Female: Try and raise the mic.

Dan: I can't. It's stuck.

Mr. Technician, see if you can move the gain on it. Thank you very much.

Now, we might get feedback with this.

Male: Ah, he'll turn that (inaudible).

Dan: All right. Good.

Male: You're good?

Alain: Where was I? You may regret this.

So we started this morning, I asked an additional question regarding the two questions that Daniel framed for us for the afternoon and I wanted to know if there were additional points on the present state in terms of surveillance. A funny thing happened: we quickly diverted to our desired position in a preferred future. What does this mean?

So, we quickly looped into "What does success look like?" despite my efforts to try to get more data on in terms of our current state. So, we tackled the two questions, and the first question was on what success looks like. There was a whole bunch of ideas that came together, that came out, and I've kind of, I think, summarized in a very quick paragraph with a couple of key points.

What we hope to achieve, "What does success look like?" is a surveillance approach that is systematic, it's across all provinces, and it provides timely, accessible information about risk and how the risk evolves over time and space. Bracket, or parenthèse-"It's a shift from a surveillance system that's kind of static and kind of retrospective to that one is more predictive," is, I think, the essence of what's being expressed there.

There's a couple of key points that you'll see coming back in "How do we get there?" question that's going follow up in a minute. And one of the key points that came out was, we need to leverage the citizen-scientist and his or her presence in broadening our data collection and increasing our efforts and the by-product of which, which we know, is increased awareness and increased education (inaudible) large.

There's a desire that we need to quantify the risk and how it evolves over space and time, and that's the research dimension to it, if you wish. There was also some discussion about having a better case definition for surveillance and being more defined in that respect. There's also several questions, and it came out time and again in our conversation, around the use of best practices.

There's some good best-practices out there that we may or may not be leveraging with respect to surveillance. So why don't we leverage those and make sure that we take advantage of it? That conversation around that desired end-state took about 45 minutes, and we then looped in, after break, into the "How do we get there?" question, which really evolved. And those of you that were in the room, this may not be-because it wasn't written that way on the flipcharts that I generated, but as I looked through the flipcharts, there were four themes that jumped out at me.

And the first theme is, I will call it, the system of Lyme disease surveillance, and that's perhaps the biggest theme. There are components to it. I'm going to list about six or seven to the system side of things here. It came out late in the conversation, but it came out very clearly, we need to have clear, common surveillance objectives across all provinces and across the variety of federal government departments that poke at this issue of Lyme disease. So, clarity of surveillance objectives.

We need to have-oh, here was the quotable quote: somebody in the room said, "We suck at sharing information." Okay? So, the idea is to "un-suck" at sharing information. So, the second point is around, the feature of the system is our ability to be able to use and share data across the system. "System" meaning the provinces, federal government, and other levels of government as we've seen in some of our conversations around surveillance. There are two conditions here that we started articulating and one is around we need to have governance on this because our governance system around this is not working well. So, the governance issue came up and the need for standards, data-collection standards, meta-data standards, and so on, around making sure that we have that compatibility in the information that we gather, that we gain.

We also talked about, to create this, we need coordination. And coordination's the easy one, but we also need funding to be able to do this. To coordinate our efforts and to make sure that we come up with something that is consistent and useful. Let me come back to the theme that I spoke a moment earlier about: leveraging the citizen-scientist and citizen participation. There's quite a bit of discussion and some really great examples that were shared in our room around how this is done. Kind of outsourcing or crowd-sourcing that kind of information data-gathering. Recognizes that there's some caveats tied to that, but it is an essential element that we think we should be leveraging on this.

A sub-theme to the citizen-scientist is that notion of perhaps leveraging those that work in industries that are in close proximity to these reservoirs of Lyme disease. People that works [sic] in parks and recreation in municipalities, people that work in the forestry industry, I could go on, but that's a compelling case that you've got a captive audience there that are exposed to the disease, that can act as all sorts of data-collecting mechanism, awareness-raising, and so on. So, that was two elements that really tied under that notion of leveraging those other resources.

There was another group that was also expressed as essential in maintaining, and those are veterinarians, who have got perhaps the best system in place right now. We need to continue to tapping into that, and that is an essential element to a surveillance mechanism.

We had a bit of a conversation around the need to establish a baseline level of surveillance because the reality is that it is impossible in this tiny country that we call Canada to do effective monitoring and surveillance around the entire territories. It's just too big. So, we talked about a need for baseline sentinel sites. We need to make sure that we're transparent about what sites these are, the data coming out of those accessible, and there are many qualities that we talked about that were also essential to that.

We also had quite a bit of conversation around the need, and as a matter of fact, that's where the whole conversation started for us this morning, is leveraging new technologies. There's all sorts of emerging technologies out there that can probably revolutionize how we can do surveillance. We had some examples this morning and certainly we need to leverage those. So those were all the elements that talked about a system of Lyme disease surveillance. That's how I've captioned it under this particular theme area.

A second theme area is I'm calling "risk communication," and there's a number of pieces that fall into the notion of awareness. So we crossed into your territory again Kathleen. So, we ended up talking about that to some degree, but we talked about how risk information and risk maps are currently drawn, and how misleading that can be. And the fact that a risk map may just show us a red dot on a map doesn't really speak to the fact that ticks are fairly mobile and that there's decreasing areas of risk around that particular area. So, we talked about that risk maps have to be more like a topographical map that shows concentric circles around those high-risk areas that show that the risk is still present, but maybe not as prevalent as (inaudible) so monitored up to date.

We also had some great conversation that there is no such thing as "zero risk," and the corollary to that is that "low risk" doesn't mean "no risk." So we had quite a bit of conversation around that, and perhaps that also needs to be transmitted as a message within those maps.

We talked about signage standards, standards for signage, targeted locations for signage. There's some things that are easy to pick, particularly in the high-risk areas. And also the fact that a couple of you highlighted existing-really sound, existing resources currently around Lyme disease. There is a poster that's in the-I don't know if it's still in the overflow room. It's still there? Thank you, Stephanie. So, there's some information and some public awareness information that is readily available.

We also talked about, particularly around the fact that risk maps are being misused. They're being used by some to generate tests or prescribe tests, diagnosis, and follow through on insurance claims. And we talked about it this morning that that's somewhat of an inappropriate use of those risk maps because those risk maps are really research tools. So, we talked about printing or putting a disclaimer somewhere on those risk maps that says, "This is for research purpose only." And there's several examples that were raised over the course of our conversation.

And then of course the notion of risk communication is all around trying to drive behaviour change, so that those that do expose themselves to risk do so in a smart way, do so in an educated way. So, that was part of the conversation kind of drifting into the awareness part.

There's two other themes that I want to talk to, that we talked about this morning, that I want to deliver here. One is around research. We had quite a bit of discussion around research and the point we landed on is, we need a surveillance research agenda. We don't know what that's defined as yet, but we know we need a research agenda on that and guess what? We also need the funding to go along with it. There is also existing research or prior research that ought to be, should be, must be leveraged. We can build upon our achievements, the things we've got in the past.

One of the short-term projects that was identified fairly early, and this came from the presentations that we got from our guest speakers yesterday. They showed a variety of heat maps, variety levels of- a scale. How do we say that in English? Scale. Various scales. And there should, there could be, a very quick, very simple project, perhaps with a graduate student, to assemble those maps together to show that risk in a much broader way. So, that was one thought of what could be done in the short term.


Still on the research topic, there was also a point made that patient and advocacy group representation in the development of research-sorry-of surveillance protocols, methodologies is valuable and indeed desirable. That was something that was reflected in the conversation.

The final theme on surveillance is, and so far really a focus in how I've presented this really on the surveillance, and that is of the reservoir of the disease, particularly in ticks. We also talked about surveillance of the disease in people. And we talked about closer, better patient-monitoring, recognizing that there are severe limits that are imposed by privacy legislation. We also talked about physician reporting and we need to improve that, and that we agreed was going to be a rather challenging issue to tackle. So, we didn't get into specifics on that one, but we really identified that. And we certainly also talked about, under this banner or under this theme, the need to do (inaudible) get monitoring of co-infections.

The folks that were in the room with me: I hope I've done justice to the conversation. Thank you for your participation.

Dan: Okay. I'm going to ask the WebEx operator to queue up participants, and as that is going to go on, I'm going to give the floor to the main room to start. Based on what you've heard from Alain, of course, it's as many ideas as were discussed this morning, the many, many more that have been noted. Is there anything missing in terms of what should be considered in the context of surveillance?

Is there anything missing that should be considered? The microphones is …

I know there's a microphone there. Oh, you're ready to go?

Well then you get the microphone.

Male: [00:19:18]

I was in the surveillance for much of it, and I think that was a great summary, but there are a couple of things that I thought could be emphasized a little bit more. There were several points made about the need for transparency of the information as well as patient input into the design of the protocols, I felt. And also, I thought that the emphasis was a little lower than it was perhaps what was discussed about: the need to monitor all Borrelia and all co-infections as that are reasonable.

Dan: Okay. Thank you.

Pass the mic. Are you going to handle the mic?

Okay. Good. Thank you. Let's go to you.

Female: [00:20:02]

I'd just like to say that dogs also contract Lyme disease, and they can carry ticks in to the home where people can get infected as well. And therefore, as dogs are quite susceptible, and so are some other pets and stuff, it makes sense to test the ticks on the dogs that come into the vets to give a better indication of the true surveillance that's out there.

As it stands in B.C., vets have been told by the BCCDC for years not to send-they contact vets saying, "Please don't send us more ticks." And on top of that, as of last year, they implemented a hefty fee to check, identify the ticks, and test them. And this fee, I was told, was 120 dollars. So, you pay the vet to see your dog. You pay 120 dollars for testing. Therefore, it's much cheaper, more economical, and much better for the pet just to treat, which is why dogs, they do tend to just to treat. So, we need that addressed.

Dan: Great. Thank you. Point noted.

Next person please, inside, then I will go to the overflow, then I'll be going to WebEx. Two more here.

Go ahead.

Male: [00:21:33]

A good idea to maybe expand upon is using things we already have on television, such as, like, AMBER Alerts or weather reports, like something similar to that where we figure out where areas are high-risk, maybe just scrolling it across the bottom of the screen and letting people know.

Dan: Okay. Thank you for that.

Last point in this room, for now. We'll come back, of course, but for now.

Go ahead.

Female: [00:21:55]

I would like to be able to call my public health unit tomorrow and to be counted in. So, I would like to have kind of a count-me-in program that if you have a positive test result from a different lab, Lab B, that you can be collected into the data and a certain sub-set, you know, "Here are the people that actually have confirmed in Canada; here are the people who have confirmed elsewhere." And this speaks to Dr. Hatchette's, you know, concerns around waiver-we're missing something else, but I'd like to be counted in.

Dan: Thank you.

Let's go to the overflow room.

Alain, do you have a participant in the overflow room who has something to add? Or do we move on?

Alain: Nobody in the room here with anything to add yet.

Dan: Thank you very much.

Is there anyone on WebEx who has something to contribute?

Operator: [00:23:38] Thank you. Bill Baker is our next question, please.

Go ahead.

Dan: Go ahead you have the floor.

Bill: [00:22:45]

Thank you very much. As far as surveillance is concerned, my concern is the fact that unfortunately in Ontario, doctors are severely persecuted by the College of Physicians and Surgeons for diagnosing and/or treating Lyme. So, therefore they don't. Therefore, the information is not passed on to the Public Health Agency of Canada so that people that are being diagnosed, because they are not being diagnosed. Our doctors in Ontario, I would ask that the Public Health Agency please list the doctors in the Toronto and surrounding areas and all of Canada who actually do treat Lyme and are not persecuted by the College of Physicians and Surgeons.

Maybe a document such as this could be in the hands of Jim Wilson of CanLyme and he could post the information on his web site. But it's very difficult to get surveillance on active (inaudible) when doctors won't treat, diagnose, or report to the public health clinics.

Dan: Okay. Thank you for that.

Is there somebody else on WebEx who would like to contribute another idea?

Operator: Thank you. Our next question is from Caroline Stengl.

Please go ahead.

Dan: Go ahead, Caroline.

Caroline: [00:23:59]

Hi. Can you hear me okay?

Dan: Oh, perfectly. Go ahead.

Caroline: Great. Okay, my comment is regarding veterinarians. It was brought up that they're an excellent resource for surveillance, which I really think is excellent. I just want to make the point that there are also quite a few veterinarians who need to be educated about Lyme. I personally had an experience where I brought my dog to the vet with a tick embedded in her head, and the vet was just as dismissive and condescending to me as my former GP was about my own Lyme diagnosis. This vet wanted to know if I was reading current research and he was very, very condescending, so I want to say that most vets are very knowledge, more knowledgeable than doctors, but there are some who really need to be educated. Thank you.

Dan: Good, thank you. We'll pass that on to the education and awareness group as well.

Anybody else on WebEx who'd like to contribute an idea?

Operator: Thank you. Our next question is from Doris Owens.

Please go ahead.

Doris: [00:25:05]

Yes, I have two points. One, high-school plants classes could be used for surveillance and they would cover almost all of Canada. And second point is that perhaps we could have patients from south who know where they were bitten or the area where they were bitten, or might have been bitten if they didn't have a rash, and we could pinpoint those areas for definite surveillance.

Dan: Okay. Thank you very much for those ideas.

We're going to go back into the room and welcome a few other ideas as well.

Go ahead, ma'am.

Female: [00:25:50]

I think mine builds on that, which is that currently, passive surveillance is what drives active surveillance. And while we now seem to do it through positive tests, we should also be doing it through testing that is not necessarily positive if there's clusters in areas where people are being tested because they think there is a possibility, then that should be actively surveyed.

Dan: Okay. Thank you.

Next point. You've got the mic. Thank you.

Female: [00:26:24]

And yeah, just going on further from that, I would recommend that the case definition for diagnosis and surveillance needs to be re-written with their separate objectives in mind.

Dan: Okay. Thank you for that.

Any other idea in the main room? On surveillance.

The mic is slowly making its way to you. Put your hand up-oh, you got it. Good.

Female: [00:26:46]

I just want to point out on passive surveillance. Two weeks before Christmas, I submitted two ticks that were on our neighbour's dog. And when they got to Winnipeg, they identified them as being winter ticks, which were not carriers, so they did not investigate any further to see if they were infected with anything. So, I think we are doing a good job with passive surveillance, but I think some improvement needs to be done.

Dan: Okay. Thank you.

There's two people in the main room that we're going to acknowledge and then we'll move on after that.

The mic is coming to you. Go ahead.

Female: [00:27:33]

Oh, thank you. Thank you very much, and I'm so pleased that there's such a lovely turnout. I'm here as an advocate. I've been in philanthropy for 27 years, and earlier I was-and I want to thank all the doctors and all the associates and everybody that has come forward to share their knowledge and their points of view. So, being a supporter of this cause and being on the outside looking in, I am so proud and pleased of our country, of all the citizens that are healthy and advocating, and all the doctors, and the entire team that put this together. So I thank you.

Dan: Thank you.

Female: What I'd like to say is, just quickly, earlier in the research room, what was stated is that the people that are being bit by ticks, could there be a correlation with their blood type? I know that might be far-stretched or outrageous, but is there a preference to blood type, 1, 2 or 3, to the individual patients that are being bit?

Dan: Okay. Thank you. Question noted.

Next person, please.

Female: [00:28:29]

Personally, I think that surveillance is the least of our worries right now, and it needs to be accepted that if a [sic] infected mother with a tick flies over the border, you know, there's no border control there. And they land wherever they want. You know, your information is always going to be not correct because there's…

Dan: It changes all the time.

Female: Within one year, there's going to be 200,000 ticks in that one area. I mean, it's going to be unbelievable, so we just have to accept, that it is here, and it's all over the world except Antarctica. And we need to move on from that, and accept that it's more than the blacklegged ticks. It's in dog ticks. I live in Canmore, Alberta, and I have never personally seen a black tick. And I know there's two dozen people at least in the Bow Valley that have Lyme disease. Are any counted? No. We need some kind of system-right, let me keep focused.

Dan: That's okay. A system to do what?

Female: We need to just accept that it's constantly changing its form. There's constantly new bacterias [sic] and strains that are being found very quickly on a rapid basis. We need to understand it's got to be based on symptoms and people and-sorry.

Dan: That's all right. Don't worry about it. Thank you for that. And if there's another point that comes to your mind before we leave, just note it and we'll capture it.

Female: It's just-database. We need a database right now. We could just register. All these people here are not registered anywhere, probably. I mean, not all these people, but this is probably more than many. There's thousands of people right now that are suffering in Canada.

Dan: Okay. Thank you. We'll have to move on. Thank you.

Any other points in the room? I'll take two more and then we'll have to move on.

Go ahead.

Female: [00:30:51]

Right now we should stop using the surveillance. Current surveillance guidelines restrict patients from diagnosis and treatment. You should ensure that healthcare practitioners and patients are made aware that negative test results do not meant that it's impossible to still have infection. Lyme disease should be a clinical diagnosis.

Dan: Okay. Thank you.

I'll take one more and we'll have to move on. And the others will have to note their ideas.

Go ahead. One last person.

Female: [00:31:23]

Let's break down the silos in the medical community. Lyme and co-infections…

Dan: Now is this on surveillance?

Female: Yes, because when patients present to their doctors, it will be confusing because the symptoms of Lyme and co-infections can mimic the Parkinson's, psychiatric problems, scleroderma, Alzheimer's, ALS, arthritis, lupus, multiple sclerosis, multiple systems atrophy, fibromyalgia, chronic fatigue-diseases that you say there's no known cause, no known cure. Patients with these problems should try and be considered for Lyme diagnosis.

Dan: Okay. Thank you very much.

And those of you who haven't had a chance to express your views or any further input, any further ideas, please note them and we'll capture them on your way out.

Let's go on to the next one. I'm going to ask Lise (inaudible) who is in this room here to focus on guidelines and best practices.

Go ahead, Lise.

Lise: [00:32:24]

Thank you, Dan. Is this loud enough? Can people hear me? Yes? Okay. No? I guess I'll need that.

Dan: You got it.

Lise: Thank you. Is this better? Yes? Okay.

So I don't have to say anything because most of you were in the room, right? No, sorry. All right. We actually this morning spent a lot of time on the vision and so I thought, before I get into the details of the ideas that you produced for how to achieve the vision, that I would try to summarize the visions that I heard this morning.

And again, Dan's made this point a few times, I hope I did earlier as well. I probably won't do full justice, but that's what the extra time will be for you to actually complete it.

The vision is for Canada as a world leader in patient-centered approaches to diagnostic treatment and education related to Lyme disease. This includes patient liaison and advocacy roles; a patient experience that is characterized by respect, transparency, and inclusion; trust in the medical system; timely, accurate, and effective diagnosis and treatment; doctors who are free to diagnose and treat on clinical observations as well as test results; research that includes qualitative and quantitative evidence; recognition and understanding of the evolution of the disease in its acute and chronic aspects; recognition of Lyme disease and its acknowledgement by employers, insurers, and provincial healthcare plans; and properly funded research.

I'm sure there were other elements, but those were the ones that we were able to synthesize in the limited time we had since this morning. And you have here the two flipcharts of ideas that came from the groups in terms of, "What can we do to achieve that vision?" I can't do justice to this. I'm not going to make you suffer through reading through all of them, but I did again work with the note-takers to try to see if there were some themes that we could pull out and then maybe give a few examples under each of those themes.

Before I go there, first of all, there were some common threads and the most important one, I think, was the real sense of urgency. So, even though we tried to do short-term, medium-term, and long-term, a lot of things ended up in short-term and understandably so. And I also want to recognize that some of the things that were identified for the medium- and long-term would probably require some action in the short-term for them to happen.

So, I kind of dropped the short-, medium-, and long-term themes from this report, although you can see them there, and you'll remember towards the end of the conversation, we ended up saying, "Okay. I'll just write these wherever we can make them fit because it just didn't make sense." Some of these ideas actually overlap with what Alain has already said about surveillance, and there's some things that you talked about that fit into education and awareness that I might not talk about so much.

So, I'll try to do what I always asked everybody else to do, which is to skip over the pieces that are repetitive. The first kind of theme that we identified was around research and testing-funding, obviously, money for research. And an interesting idea around that was also, "Well, let's build the business case." Let's identify, you know, how much money you save from the system by treating people early, treating them well, avoiding all this burden on the health system. How much is it costing them as well? And re-direct that money to research.

Another idea was properly defining the disease. So, the sense that it wasn't properly defined yet. Looking at multiple modes and pathogens, co-infection, and we've talked about that a little bit. Something that hasn't been spoken about in terms of research and testing was the blood-supply testing. People with Lyme disease can give blood, and that was a source of concern for a number of you, and you also talked about testing for co-infections, not just Lyme.

And then an idea that came in early on is the idea of a centre of excellence for research, and maybe combining that with a centre for treatment, so that you could get patient input right then and there, and information about the treatment. And also make sure that this centre of excellence is multi-disciplinary, so that you have all of the disciplines that intervene in the treatment of this complex disease involved in the research.

On the physician side, next theme-you know there are things around education, and I'm sure that Kathleen will speak to that at length, so that I won't go into that. Allowing them to treat without risk has come up again, and removing the restrictions to prescribing antibiotics, no loss of licence. There was mention of a five-year moratorium including allied health professionals in the whole definition and involvement of physicians and health professionals in the work on Lyme disease. Removing endemic areas from the guidelines was an idea. Having more thorough reporting on blood tests, not just positive-negative, but somebody talked about the fine print, I think, earlier today or yesterday

Around information, Alain spoke to this at length, so I won't go into it a lot, but there were, like, five or six different databases, I think, identified in the conversation that might be helpful: of complaints, of tick observations, of physicians-those that are good and those that are not so good-of symptoms, and of treatment outcomes. So, you know, this thirst for information and for good management of information so that you can do things with it. And then the international sharing of knowledge and best practices was raised as an idea.

On the patient side, reimbursement of past expenses was requested. Changes to the laws, the revision of the Health Care Act, so that, you know, people can actually access care more easily and without having to pay out of pocket; an online help line for people suffering from Lyme disease or suspecting that they've been infected with Lyme disease; having Canadian doctors allowed to talk to the US doctors when they're treating the same patient, so that they can share information and move things forward; regular annual conferences to engage patients to-and this came as part of a comment on the evolution of the tone in this room, from when you first arrived and all the sadness, to the sense of hope that seems to be emerging here, and the opportunity to speak with each other and to build your support networks, and how helpful that was to you.

There were a number of mentions around the psychological and psychiatric dimensions as well, things that might be done there. Comments around-remember that this could be somatopsychic as opposed to psychosomatic, so physical symptoms causing psychological problems. Is Lyme maybe something that needs to be considered as a precursor to suicide? And obviously the holistic approach coming back again here.

Other comments I'm going to summarize, and again, things that might not have fallen cleanly into these other themes, but I'm trying to give you as many diverse examples and cover the ground as best I can. Making sure that there's an evaluation component in the framework, so that you plan for evaluation. There were recommendations that dealt with the Canadian Medical Association or provincial governments that, you know, the federal framework might not be able to do anything about, but, you know, the message might get out to the medical colleges, was another one. You know, that they'd be centres of innovation, not only control and monitoring.

There were ideas around eradicating ticks, better protection against the ticks, and then as I mentioned, education and teacher materials around prevention, but also around supporting children suffering with Lyme disease, which again, I'm sure that Kathleen will speak to. I'm going to stop it here. I could go on for days.

Dan: Good. Thank you.

Okay. Same procedure. Let's start in here. We'll invite our WebEx colleagues to queue up as well. Question-not questions, but anything to add? Ideas that have not been heard so far. Let's start over here.

Female: [00:41:04]

I've been asked to share this with you today by a couple of physicians. I was at the hospital a couple of weeks ago. I consumed some fruit that was recalled. I went to school and I had mentioned it and they sent me home. They told me I needed to be tested and have a doctor's note to go back to school. While I was at the hospital, a patient came in with a cat bite. The attending physician said to him, "As a prevention, I'm going to start you on two weeks' worth of antibiotics, IV, as a prevention because (inaudible) for Bartonella." He didn't have the test. They did it as a prevention. Perhaps maybe we need to adopt that if we show up at the hospital.

Dan: Okay. Thank you very much.

Other ideas that you've not heard so far.

If we can get the mic to the back of the room. We'll hear from Jim.

Go ahead, Jim.

Jim: [00:41:58]

Thank you. I was going to bring this up in my closing remarks, but there's been such good, robust discussion here, I think I can eliminate it and shorten things up here. Positive way to make change, and especially in the improvement of diagnostics, is to really start protecting our doctors.

One step that could be put in place is that we put measures in place to immediately monitor the frequency with which doctors are policed by colleges of physicians and surgeons, simply for treating Lyme disease. Currently, Canada approaches about 100 percent of these doctors being investigated, but often the college of physicians and surgeons, they come in under the guise of other reasons. Yet the overall investigation rate of physicians being investigated is less than two percent. So, we're approaching 100 percent with Canadian doctors who treat Lyme when it's less than two percent overall. So, that's clearly discrimination.

One way to fix it would be to put our-for our federal treasury to stop some of your and my federal tax dollars from being doled out each year to provinces who do not specifically have a mechanism in place to protect doctors from this discrimination with effective oversight outside of the medical system.

Also, on the other aspect for guidelines, you can't have good guidelines and diagnostics if good ethical science isn't done. And currently there seems to be two standards of ethics in Canada. All of our universities have very long-standing rules of ethics in place about research, especially regarding withholding data that showed a result that could affect a person or a population, regardless of whether they're sure or unsure as to how to interpret that data. If it's shown that it may have an effect, it's got to be reported to the doctor or to that group.

Right now, our federally and provincially funded scientists don't seem that they have to act to those ethical standards. We've got to hold them to that ethical standard or else we're not getting the right information to our physicians and to the public. There's a lot of data that is being sat on right now in each of our provincial laboratories and a federal laboratory that is not getting back to the physicians and to the public that needs to get out there.

For example, we've been asking for years to get, simply, banding data from Western blots that have been run on all of us over the last several years. We don't want your personal information. We want that all stripped out. We just want the banding data. And we have had roadblock after roadblock put up and excuse after excuse. In fact, at one point, we were told, "We didn't see the value of it, so you're not getting it," or "We didn't think you needed it." Well, that's not your decision. This is public data that needs to get out there to be evaluated.

Dan: So, you're looking for open access, Jim.

Jim: Absolutely. Open and transparent. And proper ethics applied.

Dan: Okay. Thank you. Point noted.

All right. There's a mic that's travelling up here. Where's the second mic?

Oh, you're holding on to it. Okay.

Next idea, and then we're going to go the overflow room, Alain, if you have any interest there. Go ahead.

Female: [00:45:45]

I'll make it quick. Just a couple things that came up. One, during lunch, one comment was that, rather than disability be like it's all-or-nothing, so have, like, a part-time disability for those that can work only part-time during the week rather than a full-time, and have it based on functionality, not on the-what was the word that we used? Sorry?

Not on diagnosis-sorry.

And the other thing, along with the blood-supply, also I've always thought about organ donation and how that should be thought of when it's being asked if you want to be an organ donor. I don't think any of us should be giving our organs and that should be considered as well.

Dan: Okay. Thank you for that point.

Mic to the back. Anyone else? There's two hands in the back and one over here. So, we'll go over here and then we'll ask you to go the back and then we're not forgetting you.

Go ahead.

Female: [00:46:39]

I think it's absolutely amazing what we've done here and I want to make sure that we don't lose this work. So, I think we need to have a process of accountability with this federal framework. And considering the fact that after the framework's published, I believe it's six months that the provincial health regions have to come up with their own standards. I would like to see, in two years, having a follow-up to the federal framework where we gather here again, that the health ministers are there, and we're saying, "What have we done? Have we accomplished our objectives?" and to actually tie some of those federal transfer payments to the results, making sure that the results are in line with the framework. And if you tie money to it, it will happen.

Dan: Okay. Thanks for that.

Hang on for one second. Let me go to the WebEx folks first. Do you have anything to contribute?

Operator: Thank you. From Caroline (inaudible) in (inaudible).

Dan: Okay. Go ahead.

Caroline: [00:47:39]

Thank you. Yeah, I just want to kind of follow up with what our facilitator presented. A few of us are chatting on Facebook together, and we don't recall or we didn't hear (inaudible) said that we wanted all the funds re-directed to research. We want treatment, too. And also, that protection for doctors also includes protection for parents who are forced to treat in secret and who get accused of (inaudible). Thank you for that.

Dan: Thank you.

We're going to go to the overflow room, then WebEx, then back in here. So, if your hand's up, don't worry, we'll get to you.

Overflow room: question, please, or your idea for input.

Michel: [00:48:22]

Yes. Michel Savard, advocate. Regarding holistic care, we made allusion to it a few minutes ago. We talked this morning about certified naturopaths and MDs working together. We want to have that facilitated, encouraged, and we also talked about naturopaths. In some parts of Canada, they can prescribe. Other parts of Canada, they can't. And of course, in other parts of Canada, they don't have to be certified. So, we would like to see some kind of a holistic approach be encouraged and facilitated. Many of us might be seeing a naturopath and an MD, and often they do not have the opportunity to work together. We want to see-I'd like to see that happen more often, facilitated, encouraged, and of course, in some cases, simply-yes, that's what I want to say.

Dan: Thank you. Appreciate that input.

Let's go to WebEx participants.

Operator: Thank you. Our next participant is from Elaine Gagnon.

Please go ahead.

Dan: Allez-y. Go ahead

Elaine: [00:49:23]

Thank you. Can you hear me?

Dan: You'll have to speak as close as you can to the microphone, because you're…

Elaine: Is this better?

Dan: Yep. Keep going.

Elaine: Okay. I just wanted to expand on the importance for having the conference annually. It's not just an area for us to get support, but it's also a forum that we can keep updated on new research, whether or not our treatment is helping, whether or not we're able to get effective treatment, and whether or not further education is needed. Thanks.

Dan: Good. Thank you for that.

All right. Anyone else on WebEx? We'll take one more person.

Operator: Thank you. Our next participant is from Kelly Jensen.

Please go ahead.

Dan: Thank you. Go ahead.

Kelly: [00:50:09]

Hi. My question-my points kind of revolve all under three sessions that were made, but I'd like to-the fact that-can geneal Lyme be addressed as well as a sexual transmitted infection? Secondly, I'd like the testing to be considered for other organisms to transmit the disease. I myself was bit by a mosquito and had all the symptoms of acute Lyme as in migraine, rash, a torso rash and flu-like symptoms for three days. So, I'd like that to be considered. And also, as it's been mentioned, that we don't work in isolation and that we look at other countries and their protocols and policies and their practices. Thank you.

Dan: Good. Thank you for that.

We'll go back into the room.


Male: [00:51:04]

(Inaudible) really deals with the colleges of physicians and surgeons as well. Quickly, when you look at them online, you see lines like "regulates the practice of medicine" in B.C.; in Ontario, "continuously improves the quality of care"; in Manitoba, "protects the public as consumers of medical care and promote the safe and ethical delivery," et cetera. The issue we raised at this table, and I really want to strongly underline it, is that attention needs to be placed on those occasions when the role of the colleges of physicians and surgeons in regulation leads to a detriment of innovation.

The two, regulation and innovation, are essential to quality medical practice. The regulation to the detriment of innovation results in stagnation. Innovation without things we've been talking about, like documentation, guidance, this leads to wasted effort. So, innovation with a reasonable degree of regulation, the very tools to collect information, the data-doing it methodically, accurately, comparably-this is where the colleges need to place their efforts and become enablers as (inaudible) as policeman.

Dan: All right. Thank you very much.

Let's go to the next point. Other idea for consideration.

Go ahead, sir.

Male: [00:52:46]

Yes. Thank you, sir. So, patients and doctors working together are what'll make the solution possible. And one example is, like, our snacks that we have here. Like, from my perspective, I can't have sugar because of antibiotics, so … But anyways, best help available from a patient perspective are from those that are cured from Lyme, because when you have bad symptoms, you can't explain yourself as well and help. So, to help this problem ASAP we need treatment / funding ASAP, so I wrote, "compassionate loans now for who attended and registered online for the conference," and then because it was mentioned before about reimbursement, which could happen at a later date, but treatment can't wait. So…

Dan: Good. Thank you for that.

Let's go to the back of the room please.

Female: [00:53:53]

This tags on well to the comment in the other room about holistic treatment and the sugar comment. In recognition of the importance of nutrition and health of the personal and community microbiome, as part of Lyme treatment, that registered holistic nutritionists and other holistic healthcare providers be considered part of the integrative healthcare team, that the service of these folks be covered by provincial healthcare plans, and that if these plans are not covered by healthcare, that they be tax-deductible to the patient. So, that would apply to all integrative or healthcare professionals.

Dan: Good. Thank you for that.

And we have-over to you, ma'am.

Female: [00:54:39]

Research for vaccinations. We've had vaccines in the past. No, it wasn't as effective as we would've liked it to have been. There are vaccinations for dogs and other pets who spend their time outdoors and for those of us who spend our time outdoors, it would be nice to have a vaccination. Thank you.

Dan: Good. Thank you very much.

Next person over here, please. Go ahead.

Female: [00:55:03]

Hi. I'd like to see Public Health Agency do a cost-benefit analysis of treating suspected Lyme or the categories of Lyme that have been mentioned here, even without positive Canadian testing versus the current status quo.

Dan: Thank you for that.

Any other ideas for consideration? The mic has gone away from you, here. Do you have somebody there? Over here if there's one person-okay, we'll go to the back and then back to the front. The front two.

Male: [00:55:32]

My comments were regarding the guidelines. The guidelines really need to have honest information that doctors can use regarding late Lyme disease and the difficulty in treatment with late Lyme disease. And for that, I'm talking mainly about the fact that current emerging evidence and scientific research is showing, you know, that persistent bacteria does exist. You know, it appears to be non-culturable. It's unknown if that's causing, you know, consistent or continuing disease, but it just needs to provide honest information so that doctors can either act on that or, you know, perhaps do some more research themselves and looking for the latest research, and decide what is the best approach.

Dan: Thank you for that. And over here.

And we'll bring the mic to you in a moment. Go ahead.

Male: [00:56:20]

Thanks. I think we're doing better with this, but I just want to address the issue with-like, I am a Lyme patient as well, and I think we kind of need to start working on stop blaming all of the doctors. Because they're under the scope of the IDSA and College of Physicians, so even if they want to help, they'd be disciplined. So, some of them, it's not their fault. I mean, are there some who, you know, aren't working for the paycheck? I don't know. Maybe. But, yeah, so I just want to work on that, and just specifically mention maybe at some point working on getting the doctors who had their licenses removed back, because we need them too, right?

Dan: Okay. Thank you. And over here.

Female: [00:56:59]

We had talked in the group this morning about how some Lyme-ees who are recovering or recovered are capable of doing some sort of work, but maybe not the field that we were in previously, and so, funding for new learning for them so that they can be employed again. And then I just had the thought about potential jobs that are going to be opening up because of the new framework. Perhaps Lyme-ees, who know more about it than the average person on the street, could be considered for employment in some of those areas.

Dan: Thank you for that.

Let me now go to-we'll get the mic to other people in the room, of course, but let me go to the WebEx folks to see if there's anyone who has any other idea to contribute.

Operator: Thank you. Our next idea is from Catherine Leanne Morgan.

Please go ahead.

Catherine: [00:57:55]

Yes. Hello.

Dan: Hello.

Catherine: My two comments are that we include the agents that attack the biofilm at the same time that we are looking at agents to treat, like herbs and antibiotics. We need to be looking at biofilm. We see that there's a lot of research on it in the States. And we need to pull on that research in Canada so that going forward in our guidelines, we're really looking at that. The other thing is, I'd like to see the World Health Organization have a role, like in terms of educating, and leading in terms of the needs here in regard to Lyme and co-infections. Thank you.

Dan: Okay. Thanks for that idea.

Is there somebody else on WebEx?

Operator: Thank you. Our next idea is from Doris Owens.

Please go ahead.

Dan: Thank you. Go ahead.

Doris: [00:59:01]

Yes, two points I'd like to make out. One, one of our leading newspapers here has not had one thing in it about the federal conference going on there and perhaps some info from that could go to the leading newspapers. And two, just a point of interest, B.C., who says they only have 0.5 percent, they also had the first raptor bird that was a reservoir for Lyme disease that infected the ticks. And this bird was diagnosed back east, not in B.C.

Dan: Okay.

Female: It was sent back east. Thank you.

Dan: Thank you for that.

We're going to back in the main room, and ma'am, over to you.

Female: [00:59:56]

I'll just be really brief. The new guidelines should be developed following the Institution of Medicine's-sorry-standards for developing trustworthy clinical practice guidelines.

Dan: Okay. Thank you for that. Any other ideas in the main room?

And this mic should be on. Go ahead.

Female: [01:00:15]

Hello? Okay I just wanted to state that Canada can take advantage of current, reliable, correct practice guidelines and treatment guidelines that do exist. Now, there's no need for us to re-invent the wheel with all of this, because there are some great reliable resources already existing that should cut our time down in implementing all of this.

Dan: Good. Thank you for that. Any ideas in the overflow room? I'll come back to you.

Is there anyone in the overflow room who'd like to submit another idea? We're good? Thank you.

And we're going to conclude in this room here. There's a person over here who wants to submit an idea. Anyone on this side? Because we're almost done.

Go ahead.

Female: [01:01:04]

Yes. Hi. I'd just like to say, considering what a chill is put on research and sharing of information in general by doctors being persecuted for treating let's say chronic Lyme. I understand that in the States that there's a dozen states that have enacted legislation that prevents doctors being persecuted for treating according to their clinical judgement, treating possibly more long-term and so on with these syndromes for which we really do not have a complete understanding as yet. So I would like it looked into as to whether we can have a legislative framework for stopping persecution of doctors. Thank you.

Dan: Okay. Thank you for that.

Last call for folks on WebEx.

Operator: Thank you. We have an idea from Bill Baker.

Please go ahead.

Dan: Bill, go ahead.

Jenny: [01:02:09]

Hi, Bill's wife Jenny, actually, and I presently have chronic Lyme disease. I can't find a doctor to treat me and I really wanted to go this (inaudible) to meet a doctor, maybe who knows something, maybe even connect with him afterwards. Is there any way to get a list out of doctors who've attended and are interested in trying to help, at least with some of the testing within the law who would be willing to see me?

Dan: [01:02:49]

Okay. We'll note that question. We won't be able to answer it right away, but we'll note that question, ma'am. And thank you for submitting it.

Jenny: Actually (inaudible). If doctors there would agree to do something presently about it, which is to put their names on a list that says, "Yeah I want to help people now."

Dan: Okay. Thank you for that.

I think we'll have to move on. Those of you who haven't had a chance to express a new idea on guidelines and best practices, please submit them on your way out when we're done today. We're going to conclude with education and awareness. Kathleen Conley (ph), the floor is yours.

Kathleen: [01:03:35]

Merci. Okay. Good morning ladies and gentlemen. Again, Dan, we had a passionate and brilliant group. Again.

Dan: Was there anybody in this room who's part of that group? All right.

Kathleen: Okay. So, let me just very quickly-we talked about the vision, okay? If education and awareness was done well, what would it look like? In no particular order, and I'll go quickly, there would be one source of factual information for Canada. Two, information and tools would be readily available to all. Three, physicians would be protected. Lyme disease would be factually covered in the media. The media would be well educated. People would not have to go to the US. There'd be consistent and respectful patient-support, you know, with ethics. We would have access to new technologies as they exist. There would be prescription rights for naturopathic doctors and pharmacists including IV. Messaging would be strategically combined, so that for most impact, kids would be fully educated, physicians would know what to do and where to get credible information. There'd be multi-disciplinary teams working together, including the naturopathic doctors. And Canada would become a world leader. So that's, in a nutshell, the vision as it was described.

Let me just-what we did then is we said, "Of course, we can't communicate and educate all different groups the same way." So, we identified the key audiences. There were eight key audiences, and then we worked on each one of them. Again, I'm going to just give you a bit of a snippet of what we said for each of the audiences.

The first audience-let me just flip that over here-is medical and veterinary professionals. And what we said here is that obviously messaging would be extremely important to them. They would have the basic education-I won't go through, you know, how to remove and all of that-but they would all have basic information. Education would be very effectively communicated through the journals that reach all of those people. National guidelines, a clearinghouse would exist. We talked about a specific web site for doctors called UpToDate, which could be a good vehicle. And it would include chronic Lyme disease guidelines and considerations for chronic patients. So, again, key audience and here we're not just talking about physicians, but we talked about, you know, acupuncturists, nutritionists, TCM, et cetera. Okay, so again, I won't go through all the detailed lists, but it would include all of those folks.

Another audience that we talked about is patients, of course. And, you know, beyond obviously meeting their needs, you know, which could include financial assistance, transportation assistance, supplements, and complementary care, what we said is they also need a lot of good information. So, we talked about, you know, reaching them through pamphlets in doctors' offices or pharmacists, even at vets, and that a yearly conference that is sort of patient-centred, like this one, would be a good means of making sure that patients as well are well-educated and have good awareness. And again, I'm just going to go with the highlights.

We talked about parliamentarians as being an important target audience. They would obviously need to have factual information as well. What we would look for is for them to be educated and aware, so that we could end up with a Canada-wide strategy for ministers on Lyme disease that would include co-infection, prevention, awareness, surveillance. A provincial law to protect physicians-these are all the things that we would ask parliamentarians to look at if they were well-educated and well aware of the issue. We would ask them to sponsor studies, the needed studies on Lyme disease prevention, awareness, surveillance, et cetera. We also talked about legislation now around marijuana and that there could be consideration of Lyme disease in this new legislation that is going to be prepared. So, again, snapshot only.

We talked about Canadians and the public in general. They of course need to be aware of the broader definition of Lyme and all co-infections. The great imitator. They need to be aware of the risks, you know, bites, proper removal, migratory birds, sexual transmission, breast-milk transmission, in-utero transmission, et cetera. So, they need to be aware of the risks. We talked about a national Lyme-awareness day as a good vehicle. Multimedia, of course, and again, I won't go through all the different media that we talked about. And it would be nice to have some sort of celebrity champion that could be a spokesperson that the general public could relate to and would listen to.

Another audience we talked about is public health agencies, FPT and at regional level as well. We need to make sure that PHA-posted guidelines reflect the framework, not just the IDSA rules. We would need them to acknowledge that every province has Lyme and to communicate that. We need to provide access to advisory specialists. We would need a time-based billing code for the complex patients because you can't see patients with Lyme in a, you know, limited time that exists now. We would suggest paying doctors to attend accredited learning sessions on Lyme. Mandatory learning-some ideas were hiring summer students to educate the public. And again, a yearly conference for the people in these agencies so that they're aware. And we talked here about the blood and organ donation and awareness about that under this header, but we realized that it was relevant to many others groups as well.

We talked about kids in schools and, really, what we'd be looking for there is to eliminate contraction in the first place. Yeah? Is there something…

Male: You're close to the …

Kathleen: Hard to hear you.

Oh. Hard to hear me? Okay. Should I stand here maybe?

Male: Yeah, we can't hear you.

Kathleen: And I will speak louder if I can.

So for kids, the main objective is to eliminate contraction. And then just talk to the board. That's what I will do.

Okay so, the objective with kids is obviously to avoid and eliminate the chances of contraction. We talked about a whole different means of reaching kids, you know, use of smart boards in schools. Has to be age-appropriate, it's got to attract their attention. So, include, you know, role-plays, comics. We should work very closely with all the people who reach kids: teachers, coaches, guides, parents, doctors, etcetera. We use them to reach children.

We would educate-oh, we said, "We've got to educate and teach but not scare." Now, there was a bit of … "We should probably scare the parents a little bit," was one of the messages I heard. But we don't want to scare the children. We've got to make parents very aware. And then the importance of notifying parents if there's a risk that we think a child might have been exposed, let's say during classroom time or playground time. We would notify the parents and so that they would seek professional help. The group was saying, "And, you know, we wouldn't want teachers to be trying to handle the situation themselves." And that would have to be done immediately as soon as if a tick is found on a child. So again, much more discussion around kids, but in a nutshell that's what we said.

We said we have to also make sure that the media is well aware because they're the ones communicating messages to all of Canadians. So, they would just need to have the correct information. Make sure we get that to them, you know, and it's got to be focused on tick-borne illness, not just Lyme, messages that are being repeated. And it would be nice to consider a big media campaign, you know, like the one that Bell is doing on mental health, for example. And we talked about the fact that if you want the media to pick something up, it's got to be sexy and ticks in of themselves aren't sexy, but, you know, if you inform that Lyme can be in vaginal and semen secretion, then maybe it would be considered more sexy. The group even drew a picture, it's basically a tick and it says, "Would you have sex with this?" But the point is, if you want to get the media to cover something, you've got to be creative.

Female: That really works.

Kathleen: Yes, exactly. Okay.

The last group that we looked at was recreation and outdoor audiences and they have to be aware of the risks, obviously. So, signs at parks, campgrounds, summer camps, outdoor magazines, all the means to reach those people that are out there and, you know, always exposed.

So, in a nutshell then, those were the messages that we talked about.

Dan: Geez, I didn't know this was 14A, or maybe R. Who knows, what you talked about in that room? Geez. Ralph, be careful. Block his ears.

Okay. We're looking for extra input on education awareness.

We're going to start with you Jim.

Jim: Yes, I just had some clarification as I wasn't there on what the discussion was around…

Dan: Jim, you can't be everywhere.

Jim: What the discussion was around UpToDate. So that I could maybe provide a comment on it.

Dan: All right, we'll bring the mic here. And hold on, Jim. You stay exactly where you are.

Female: [01:14:29]

Yeah, very specifically, UpToDate is a web site that the medical students, the doctors all use and it's free for most of us from our divisions of family practice. It's free to the medical students. Supposedly costs 600 dollars a year, but we get it free. And doctors are hooked on this site. Anything that comes up in their office, they immediately go to UpToDate for information and it gives the IDSA guidelines. And a number of us have tried to contact UpToDate to say, "Hey, this is 2006 IDSA guidelines." But they won't listen to us. If the Canadian framework said, "Listen UpToDate, this the current research, please up to date UpToDate."

Dan: Thank you.

Jim: That's exactly why I wanted to get that information because we have been also, the Canadian Lyme Disease Foundation, asking UpToDate for years to update their information. Because it's out-of-date, not up-to-date.

Dan: Thank you. Go ahead, ma'am.

Female: I just …

Orange mic, please.

Female: [01:15:34]

Am I on? Yes.

Dan: Yeah, you're good.

Female: Just to clarify about if a child would get bitten at school, in the schoolyard. Yes, call the parents first, for sure, but some parents are not that proactive, A, and B, sometimes they're working and it's going to be too late. They need to be notified. It's their choice as to whether they meet the administration and the child at the hospital, but they have to go to the hospital.

Dan: Thank you for that. Over to you.

Female: [01:16:03]

We also suggested what we'd like to see is a Lyme green or green t-shirt day. Just like they've done for anti-bullying, let's create a shirt day. The schools could use it to raise money. We could have t-shirts, put a tick on it, they buy it at an "x" price, sell it, the profit goes to the school. It'll just help bring awareness.

Dan: Thank you.

Now, let's go over here, please.

Male: [01:16:28]

Yeah, hi. I'd like to comment on UpToDate (inaudible). UpToDate is only going include guidelines that are evidence-based, and so the dilemma we have, we've talked about over two days. You know, the ILADS guidelines are not evidence-based, and so no society is going to be able to ethically promote a set of guidelines without evidence. And so, you can pressure UpToDate all you want, but collectively we need to generate the data that actually evaluates, for example, what ILADS says or whatever other approaches can be used.

Dan: Okay. Thanks for the point. Let's go over there.

I'll take two points from here and then I'm going to WebEx. Just to give them a heads up.

Go ahead.

Female: [01:17:20]

Okay, so I'll be really quick. Regarding the comments about organ tissue donation, blood, since we now have right-to-die legislation going on, I also suggest that tissue samples or whatever can be taken from any person who's been approved for the right-to-die, that be stored into a data bank, so that when the technology catches up, we can actually see what these people were dying from since there seems to be a lot of overlap with what a lot of the patients are pointing out.

I also think that regarding education, we should look at what the Red Cross has always done for teaching swimming. We are not making people afraid to go swimming when we're teaching them what happens if you fall through the ice, so that way we can break things down into very simplistic studies. And then with land use, there's some really good studies coming out of Cardiff, Wales on how to educate people who are now city-dwellers that have weekend retreats and cottages and go hiking, on how to protect yourselves when you're going into these environments.

Dan: Good. Thank you for that.

We'll take one more person from the room, then we'll go to WebEx, and of course come back. Go ahead (inaudible).

Female: [01:18:30]

Okay, I'd like to comment on the one previous to the last comment. As for the ILADS/IDSA issues, the national guideline clearinghouse basically just puts out what is evidence-based, and they found they had the IDSA guidelines up for a while. They made some very strong recommendations to them for changes. It wasn't done. They re-evaluated. They found ILADS guidelines do have much more concrete evidence than the IDSA guidelines. So, the IDSA guidelines were eliminated out of the national guideline clearinghouse and ILADS was put in, and they are published guidelines.

Dan: Okay, thank you for that.

Let's go to the WebEx participants.

Operator: Thank you. Our next comment from Carina Tahmazian.

Please go ahead.

Carina Tahmazian? Your line is now open.

Dan: We're waiting for you. Did you want to take the floor? Go ahead.

All right. We'll have to skip over to another WebEx participant.


Operator: Certainly. Our next one is from Emily Holmes.

Please go ahead.

Dan: Thank you.

Emily, over to you.

Emily: [01:20:21]

Hi. Yeah, I just wanted to-the comment about teachers sending home children if they have a tick bite. There's also a concern-it's actually illegal for teachers to send children home if they have head lice because it's considered discriminatory. So, there would be something that would need to be addressed there, as well as the fact that lice have been shown to carry certain other vector-borne illnesses. And teachers aren't allowed to send them home. Thanks.

Dan: Thank you.

We'll take one other participant from WebEx, please.

Operator: Certainly. Our next one is from Echo Armstrong.

Please go ahead.

Dan: Go ahead.

Echo: [01:21:04]

Hi. I would just like to comment on the linear-ness of what Mr. Bowie had said earlier around evidence-based and I guess I understand the need for evidence-based, but perhaps we could expand the idea of what evidence is. When there's 10 people at a table, and they're all saying that they're better from one drug, but we can't find anything, do we sit and tell them that oh, they're not because we can't find evidence that they are? We don't know everything about the human body yet, and what I think this is doing is perpetuating a culture of closed-mindedness. We need a shift that is more patient-centred and educational shift that we all have the Googles [sic] now. There's not just this one doctor has the information.

And what we learned in mental health is that client-centred approaches work better when those clients are on-board. When I worked in mental health and somebody was prescribed something, a month later when they felt better, we didn't go to them and say, "Now you've got to prove that you feel better with a blood test." We took their word for it. And so, in this research perhaps a patient's observation of themselves because, although you may be expert on Lyme, I'm on the expert on me. I'm the expert on me. And what I say counts.

Dan: Okay. Thank you for that.

And we'll go back to the room.

Over to you.

Male: [01:22:47]

Yes. My daughter just whispered in my ear something that I hadn't thought of, and that is, what about involving the coroner's office? I was a coroner for seven years and a member of the pediatric-death review committee of the Ontario coroner, and I had a friend whose daughter was very, very ill.

And over a couple of years, I heard him telling me about her, and I thought, "I think she has Lyme disease," as a result of my work with my daughter. And I kept trying to phone him, and he was away on holidays. When I finally contacted him and said, "I think your daughter should be checked for Lyme," he said, "She died two days ago suddenly in our apartment." And she had been sent to the Mayo Clinic, among other things, and had been told she had an irregular heartbeat. I got permission to call the coroner and spoke to him and said, "I think she should be tested for Lyme."

He said, "We're going to wait for the toxicology first."

And I said, "Well, it doesn't really matter what the toxicology said. Maybe she committed suicide because she had Lyme disease."

In any case, the toxicology was negative, and I asked him what eventually she was found to have died from.

He said that she died from a cardiac arrhythmia. That's not a diagnosis. The cause of death is unknown unless you're on a cardiac monitor at the time. No investigations were done for Lyme.

I have another friend in a very similar position, and I actually made a contact here with someone who's in a similar position and has given me a vital contact where I can pursue that further. So, the coroner's office is very important to get involved.

Dan: Thank you.

Hold your point. We're going to go to the overflow room.

Alain, you have somebody with a point.

Female: [01:24:33]

Yes. I ask that the guidelines in this framework be included in curriculum for our medical students, so that they're taught right out of the gate. And also that there's an interdisciplinary approach, which has been talked about, but the problem is that we're being sent to infectious-disease specialists who-for most of us with Lyme, we don't get treated by Infectious Disease. And yet we all have neurologists, and gastroenterologists and gynecologists and endocrinologists and internal-medicine doctors, so they need education on Lyme disease as well because they're the ones who are actually treating our systems.

Dan: Thank you very much for that.

Back into the main room.

Over to you, Jim.

Jim: Thank you. I want to refer to Dr. Bowie's comments about the guidelines again. The national clearinghouse of guidelines has rules in place. The guidelines can be up there for six years or if they're not renewed, they're deemed to be out-of-date because science is evolving and changing all the time. Their guidelines were up there from 2006 to 2015. So, they were well overdue to be withdrawn because they are out-of-date. They are not current and valid guidelines. ILADS guidelines are up there, and they are (inaudible)-they don't meet the Institute of Medicine criteria for the guidelines and standards that they set. So, I just want to say, again, reiterate, that UpToDate has to up-to-date, update, their information.

Dan: Okay. Good. Thank you.


Male: [01:26:13]

Thank you. One of the groups you may have overlooked is the pest-control industry. I mean, if we're interested in murdering ticks or reducing tick numbers in the environment, engaging the pest-control industry would be useful. And there's a pest-management association of Canada that could be provided materials. And I gave a talk to try to encourage their enhancement in the Lyme prevention and tick control, and there's very little current knowledge and/or uptake of any sort of business model associated with tick control. So, that's an avenue you might want to also look at.

One thing that any of these educational components should have is an evaluation. We need to know, understand, first and foremost, what are the barriers for people using some of these preventative measures, understanding what the rate of uptake is, and then being able to evaluate them over time. Because if we just message and have no sense of whether people are getting it, we can't modify the message to improve it. So, I would say every educational component should always have an evaluation part.

Dan: Good. Thank you for that.

There are many hands in the air. I'll ask you to be patient. We'll try to get to you.


Female: [01:27:31]

Yes. I just want to mention with the awareness: it should be a year-round-sometimes things go out in May for Lyme awareness, but really needs to be year-round, as the ticks can be active any time over 4 degrees, which I've known people taking their ticks off in December and getting Lyme disease in December and in February. So, it needs to be a year-round awareness campaign. I hadn't heard that mentioned yet.

Dan: Okay. Good. Not just seasonal. Okay. Thank you.

Over to you.

Female: [01:27:58]

Many people with Lyme disease suffer from severe physical disabilities with symptoms like ALS and MS. So, those people, or many people with the disease, should qualify for Home Care's health services and be able to get CCA senior assist, to be able to administer their treatment for them, and not have to have a family member retire essentially to care of them as a full-time nurse. Those nurses need to be educated on the type of treatment and how to administer the IVs as well. And the equipment should qualify as government-funded like wheelchairs and other pumps to administer it and IV poles. And the last thing is that if we are educating people, we should educate them on the fact that this disease can be terminal.

Dan: Okay. Thank you for that.

Let's continue in the room. Over here, and then if you can queue up on WebEx, we'll be right with you.

Go ahead.

Male: [01:28:50]

This is just to the general medical community. I was just wondering what they would do if they had a family member that ended up with Lyme disease, and they had nowhere to go, would they go to the United States and try to save their family member?

Dan: Okay. Thank you for that, sir.

Okay. Any other points? Any other ideas?

We'll bring the mic down to you and then, there are a couple of people here, and then we'll go to you.

Female: [01:29:22]

Okay, I have some concerns about killing the ticks. That came up in our group, because I've went to the birding movie, and you kill mosquitoes, birds starve, their babies starve. So, we have to look at the consequences ecologically. We need to involve different scientists. If we're going to try to kill ticks, we're going to have a problem. It's like killing the bees, you know.

Dan: Okay. Thank you.

Over to you.

Male: [01:29:49]

My point and my inquiry is we need more clarification around the possibility of transmission sexually as well as to unborn children. I think there's a lot of questions around that and a lot of unanswered questions. I've heard a lot of educated people say, "Yes, this does happen and this can happen," but there's been no acknowledgement by the Public Health Agency of Canada that it's a sexually transmitted disease. And kind of a personal interest of mine, but, you know, I think it's important for a couple of reasons, in that, well, if it is sexually transmittable, well this changes things pretty dramatically because it changes the way it can be transmitted, but it also changes the mechanism of even getting attention.

The reason that the Zika virus is getting as much attention as it is right now is because it's sexually transmittable, it's transmittable to the fetus. And what about the babies? So, you know, I think that if that is, you know, something that's happening, I think it's something that we need to know about, and I think that's a bigger crisis than being transmittable by ticks.

Dan: Thank you.

And over here. We'll take a few more and then we'll go back to the WebEx folks. Go ahead.

Female: [01:31:09]

Hi. Thank you. This actually could also fall under best practices as well as education. For many of us who were infected decades ago, and not diagnosed or treated, the study of chronic Lyme disease patients who were never diagnosed and treated early on or at all, for their medical history of illness and diagnosis since infection, for educat…

Dan: Keep going.

Female: For education purposes, for doctors, to see how Lyme disease affects other systems in the body, and what treatments are possibly working and not working for them.

Dan: Okay. Thank you for that.

And over here.

Female: [01:31:52]

The comment that I would like to make is in regards to education, awareness, and surveillance. Ticks that are found on people and removed can be taken in to have the tick tested. The problem is people don't know where to take them, and a lot of places where they do take them, the ticks aren't actually submitted for testing. And the people are not necessarily, again, treated with respect when they take the tick in to have it tested. So, to me, that's part of the surveillance, but it's very important, I think, that those ticks get tested and the information, again, come back, be shared, but as public awareness, people need to need to know where they can take those ticks. I get asked that question a lot. "Where can I take it?"

Dan: Okay. Good. Thank you for that.

I will hang on to your microphone.

There's a person on WebEx who wants to say something.

Operator, please.

Operator: Our next question is from Caroline Lennox.

Please go ahead.

Caroline: [01:32:48]

Hi. Thank you very much. If this is a repeat, please just let me know, but I wanted to know if it was discussed or it's been brought up, about support and education for employers, but especially family members, spouses.

How many of us have had eyes rolled up at us? (Inaudible) been excluded? I'm getting reports that in the room there are certain panellists who are rolling their eyes and laughing at people in the room, and that is exactly the kind of behaviour that has resulted in people not being here today because they took their own lives out of despair.

So, I just want to make sure that families and spouses are included in being given the support they need. And I didn't hear that. I apologize if I missed it.

Dan: Okay. Thank you very much. Back to the room.

Female: [01:33:39]

Hello, I just wanted to speak to the comment about levels of evidence, and levels of evidence are defined in different ways. And this is from the Oxford Centre. And basically, they're in medicine. We have different levels of evidence regarding how we do research. The first one is random-control trials, the second one is cohort studies, we have case-control studies, case series, and then we have expert opinions. And the definitions that we have out now really are expert opinions, so there is a level of evidence to this case definition.

Dan: Okay.

Female: Thank you.

Dan: Thanks for straightening that out.


Female: [01:34:13]

I'd just like to flag that there's another stakeholder that hasn't been mentioned and that's the Pest Management Regulatory Agency and they're actually responsible for the registering of products that protect us from ticks and mosquito bites. The consumer information on these products is abysmally poor. If you look at what our counterpart in the US has done, the Environmental Protection Agency. So, they actually now have graphics on these products that provide consumers with information as to how many hours that product is protective against ticks and mosquitoes. So, if we want people to implement our education and awareness campaigns, we have to give them better information on the products that they use.

Dan: Good. Thank you for that.

And over to you, finally. Thanks for being so patient.

Female: [01:35:00]

No problem. I have two small observations. We need money for research for non-toxic tick-repellent options, things that are safe for our kids and our pets and ourselves. And then the other issue is that the people who have been diagnosed with diseases that mimic Lyme or that Lyme mimics should be re-tested as well, including psychiatric patients, maybe patients who don't have physical symptoms aside from the mental side, and get them re-tested.

Dan: Good. Thank you.

And over to you.

Female: [01:35:40]

Hi. I just have a request. I'm here not only as a patient and a researcher, but I'm also on the board of directors of the Florida Lyme Disease Association. Many of you may know that we were the group responsible for launching the Take a Bite Out of Lyme Challenge. The challenge went viral and went international last year. The campaign manager has fallen ill. She is now bed-bound with a PICC line and an external pacemaker, and she is having trouble keeping the momentum rolling. And I am here today to challenge all of you to join me, after closing remarks at the front, to join me and my fellow Lyme patients in taking a bite out of Lyme, so that we can take this, not just past our own borders, but that we can take the fight for Lyme global. Thank you.

Dan: Okay. Thank you for that.

All right. Any other ideas for consideration in terms of education and awareness?

Okay. We're going to go over here and then I'm queuing the operator because we're going to back to WebEx.

Female: [01:36:48]

I would just encourage everybody who is employed in a public health area to go back to your health units and seriously look at the literature that you're putting out there, what's on your web sites right now, to see whether, this, what we've learned at this conference, what we've spoken at this conference, is reflected in the material that you're currently putting out there. Because in my opinion, false information is just as bad as no information. So, I really challenge you to look at the material that you're putting out.

Dan: Good. Thank you for that.

Over here, then I've got to go to WebEx.

Female: [01:37:20]

Okay. My suggestion comes from, you know, the debate about whether it's sexually transmitted. And I guess what I'm thinking is that while we don't know maybe if someone is diagnosed with Lyme, that a spouse is automatically tested, just on the off chance. Because some spouses are in denial.

Dan: Okay. Thank you for that.

Any participants on WebEx? Operator, please.

Operator: Our next question is from Illana Spiro.

Please go ahead.

Dan: Illana, go ahead. The floor is yours.

Illana: [01:37:53]

Hi there. My original comment was actually covered by someone not too long ago, so I won't repeat that, but I just did want to make an observation too that I found that there's this big disconnect between what the medical boards are telling us. You know, I've been told in-person that, you know, there's no restrictions as far as, you know, how physicians can treat and restrictions and that sort of thing, and yet what the physicians actually are (inaudible) and, you know, that they (inaudible) refuse to treat because they don't want to risk their license.

So, I know we've gone over this in detail, but I think as far as education, perhaps there can be something to go between to educate the doctors that truly they will not in the future be, you know, reprimanded or persecuted for treating outside of those guidelines. So, just something a little more clear that will be more evidence for them.

Dan: Good. Thank you for that.

And over here, please.

And then back to you.

Go ahead.

Male: [01:38:54]

I just had a quick question about the conference. So, the people who are taking videos and taking pictures and stuff like that, are we allowed to post that on social media? Just curious, because I don't know, legally speaking, if that's allowed. It's just a quick question. For anybody…

Dan: We'll try to get the answer for you by the time we leave.

Male: Cool. And then, sorry, I had another quick thing…

Dan: Could you say that again?

Angelica, could you listen to the quest-Angelica. Could you listen to the question, please?

Go ahead, repeat your question.

Male: So, the people who are taking videos and photos during the conference-is that allowed to be allowed to be posted on social media? Where is that allowed to go?

Dan: We could come back at the end with an answer on that. Thank you, and your point?

Male: Yes. Sorry. So, I just want to take a second to stress why we need to change all of this. I realize this is a sensitive subject, but reality is, is that some people have found suicide to be an easier option-not easier, but a better solution to deal with than dealing with medical system because of the lack of mental, financial, medical, and spiritual support. I even had a family member who was suspicious of it. He lost hope, and I would be lying if I said, "At point it wasn't an option in my mind." So, I just really want to stress that point.

Dan: Good. Thank you for sharing that.

Let's go to you ma'am.

Female: [01:40:03]

That all educational material needs to reflect the diversity, both in language and culture. Yes, we're bilingual in a country, but when you look at normal populations, very few Canadians have a Scandinavian skin tone, so please start putting out photographs of rashes that reflect the diversity of population.

Dan: Okay. Thank you for that.

And over here.

Female: [01:40:28]

This is in terms of awareness and education. I think we really have to clearly outline the goals, and one of those goals has to be removing the stigmatization of Lyme disease within the medical community. So, when you go into a doctor's office, you're not afraid to say, "I think I have Lyme."

Dan: Good. Thank you for that. (Inaudible) pass the mic over here? (Inaudible).

And anyone? Who has the mic?

Okay. You can start.

And then we'll bring the mic to you.

Female: [01:40:55]

Okay. There's warnings in vet offices on Lyme disease, but I noticed going through, like, many doctors' office [sic], clinics, that there's nothing. No pamphlets or anything. And I think that needs to be placed in the doctors' offices.

Dan: Thank you.

And over there.

Female: [01:41:11]

Mine's more of just-I want to make sure this is answered before we all leave, but I'm not sure what happens after today for the rest of us. Where are we going with this information? Is that covered in closing remarks?

Dan: Wait for Dr. Taylor's closing remarks.

Female: Perfecto. Thank you.

Dan: Thank you.

Any other ideas? We'll go to WebEx if there's anything.

And we'll get a mic to you.

Operator: The next question is from Doris Owens.

Please go ahead.

Doris: [01:41:39]

Yes. My comment is that many neighbourhoods give money for local activities. And therefore, these-you could apply for funds to them to educate your neighbourhoods on Lyme disease. Thank you.

Dan: Thank you for that.

Back into the main room.

Over here, ma'am.

Female: [01:42:01]

We need to get a national database going immediately of everyone that's here and the acknowledge [sic] that, you know, we have gotten treated. We know it's chronic Lyme and we're trying to move forward on that instead of trying to, you know, pretend that some of us aren't or whatever. We need to have doctors and everyone available to this information so they can learn from us. I'm sure a lot of people would be willing to give all sorts of information to allow things so that doctors can learn from to be able to diagnose and treat.

Dan: Okay. Thank you for that.

That was also a subject that was discussed in this room yesterday, too. So, it adds to what was already brought forward.

Over to you.

Go ahead.

Female: [01:42:58]

Just a recommendation regarding education that the guidelines include how actually to become certified Lyme-literate for healthcare providers.

Dan: Good, thank you for that.

Ma'am, over to you.

Female: [01:43:14]

One way of introducing this and sort of inciting some sort practice change amongst physicians and other healthcare workers is to start off with some kind of survey of the medical practice, just in terms of what they know, and their current practices because it gets the creative juices going and it gives you some kind of baseline. So this idea was brought up in the context of surveillance, but it also has an educational component.

Dan: Good. Thank you for that.

Any others? Because I think we're starting to run out of steam.

Maybe some of you and me.

Go ahead, ma'am.

Female: [01:43:56]

Yeah, I am too. You'll all be glad to know that.

Dan: Did you arrive here with a reputation? Go ahead.

Female: Definit…

Dan: They said, "Yes." Go ahead.

Female: Yeah. It precedes me. I know.

See, that's the problem. I got Lyme brain now. It's gone.

What I want to be absolutely sure of is that anything we do as we move forward, that it must be patient-centered. I want to some kind of bill, law, whatever, that says anything that's going to go in to Lyme. For example, like Queen's University, the research that they would like to do will not happen without patients' involvement. So, no money's going anywhere without Jim Wilson and his group and the rest of us being made aware of it. That's the only way we can control and implement what's being done for us.

Dan: Okay. Good. Thank you for that.

And over here.

Who has the mic?

Go ahead, ma'am.

Female: [01:45:15]

As a point of education, I think it's very important that we do a poster that can be spread across Canada, which would include multiple different presentations of erythema migrans rashes, including ones of different colour, as well as noting that some people just don't get a rash.

And it should be spread all over the place, in doctors' offices. People need to be able to see it in the public and not just as professionals, so that patients, if they see they have a rash, they know to actually to go to their doctor and they're not going to be dismissed because they don't have a bull's-eye.

Dan: Good. Thank you.

Any other points? I think there's a hand raised over here. And over there.

And I think we're going to start wrapping up. (Inaudible) ask the tri-chairs to come and sit down too, okay?


Female: [01:46:15]

Hello. So, the education for medical community, doctors in particular, was mentioned earlier. I'd like to just expand on that, that perhaps there could be levels of education. There's an obligatory one session that would be required for all general practitioners. And then perhaps beyond that, there could be a second level and a third level with continuing-education credits, so that those particular individuals would be identified by us as Lyme-literate doctors, like the people who are a level 3 or something like that. But at least you would know that when you go to your GP, they have a good base as to what Lyme's all about. Thanks.

Dan: Good. Thank you for that.

And there's a point at the back of the room.

Go ahead, ma'am.

Female: [01:47:01]

As part of the education and awareness campaign, is it possible to include photos of ticks when they look like they have six legs as opposed to eight? Because the two front legs, when they're stretched out, and the ticks are questing, it would look like they are more like antennae as opposed to legs. But when they walk, that's when they look like they have eight legs, and that's a confusing part. So, include photos of what they look like when they're questing.

Dan: (Inaudible) verify what it is. Good, thank you for that.

Are there any other ideas from the WebEx folks?

Operator: Certainly. Our next one is from Barbara Savoy.

Please go ahead.

Barbara: [01:47:43]

My concern was including the pharmacies who do compounding pharmacy and I know that topical magnesium saved my life, but ingesting magnesium didn't do me any good. So, they need to be included as well.

Dan: Thank you.

Is there any other participant on the WebEx line? We'll take another person before we start closing.

Operator: Certainly. Our next one is from Caroline Steigel.

Please go ahead.

Dan: Go ahead, Caroline.

Caroline: [01:48:16]

Thank goodness. I was starting to get so frustrated waiting. Thank you…

Dan: We apologize. There's so many people involved, but please share your idea.

Caroline: Here they come. I have two important points. First of all, a lot of Lyme patients are using medical marijuana to manage their symptoms-in particular, pain-but other things as well, because other drugs aren't effective. And I think it's really important that Lyme-appropriate cannabis medications that can legally cross borders be developed, so that Lyme patients are no longer restricted from international travel by their need for cannabis medications. And in partnership with that, there needs to be more education to combat the stigma around medical marijuana.

My other point is that, regarding what Ted Cormode was saying about coroners. Coroners are a great resource for surveillance and research, and I think a lot of coroners need to be educated more, so they can be even better resources for us. And one example of why this is important is that there has been research done by a coroner to show that there are spirochetes, Lyme spirochetes, present in the brains of deceased Alzheimer's patients. And there's a lot of research being done that shows there's a connection between Alzheimer's, dementia and spirochete infections. I'm 39, I'm already having memory and cognitive issues, and I don't want to die of Alzheimer's or dementia like my grandmother did. So, research needs to be done into this. Thank you.

Dan: Thank you. We appreciate that.

Last comment in the room on education and awareness.

Female: [01:50:05]

I just thought (inaudible) as we're kind of going to wrap up, I'm just wondering how we're ensuring that all the efforts of the stakeholders involved here today are going to be represented post-conference, and if there's maybe anyone in the room that could just comment briefly on that for all of us. I'm sure we'd appreciate that.

Dan: And your question again, was?

Female: Just if there's a comment from anyone about just getting into post-wrap-up, about how all the stakeholders involved and everyone represented here today, on all sides, how we can ensure that we're all represented post-conference.

Dan: Okay.

Female: As we move forward.

Female: As we move forward.

Dan: Okay. Good. We'll wait for Dr. Taylor to address that at the end.

And you-we're going to the last points here.

Go ahead.

Female: [01:50:53]

Just very quickly. I really would like to see more cross-pollination, more openness between disciplines. And so, this disease does not just stay in one part of the body. And so, like, ideally, when I'm envisioning a perfect world, a GP would be open to alternative medicines, or at least wouldn't scoff at-using Chinese medicine, naturopathic medicine, homeopathic medicine to work with this illness. So, just an openness and a curiosity and respect for different disciplines in medicine.

Dan: Okay. Thank you.

And you have a very last point. We've got to start wrapping up.

Female: [01:51:33]

Thank you.

Dan: Hang on to your point.

Go ahead.

Female: Hi. Thank you. I just wanted to know after this conference, the follow-up to the conference, the report that is-I assume there's something like a report to Parliament or-I would like to know how will the viewpoints of the different groups expressed over the last three days be represented. In other words, I want to make sure that every one of the viewpoints is represented in the final document. Will that happen?

Dan: Thank you. Dr. Taylor, in his closing remarks. Thank you.

You do have the last point.

Could you bring the mic over there, please? That is the very last point. We have to move on at this point. Those of you who haven't had a chance to express any idea, don't forget to write your note down and put it in the box.

And those of you who are on WebEx and joining us yesterday and today, we will share a message with you between now and the end of the day on that subject.

Go ahead, ma'am.

Female: [01:52:30]

I think we need to keep our options open and also be able to look into some of the research like Dr. Murakami with Murakami Centre for Lyme and how he's been researching cannabidiol oil, which is a non-hallucinogenic part-(inaudible), sorry.

Dan: Okay.

Female: Of Lyme-geez. Sorry. Anyways-oh my goodness.

Dan: Don't worry about it.

Female: Because I believe that he's got some really good research going and it's showing to be a good treatment for the different forms of Lyme disease and also Bartonella, which is very difficult to treat. So, it's an option for people.

Dan: Good, thank you for that idea.

Ladies and Gentlemen, we're going to begin wrapping up. The next segment is going to be inviting the tri-chairs of this conference, who've been planning the conference, shaped its objectives, pointed to the need for people to express their views. This was not an easy conversation and, of course, it brought in many points of view. We talked, generated ideas, and now there's a couple of questions.

One, what are we actually walking away with? Which is what we've just talked about now, the key ideas that you wanted noted, in terms of the construction of a federal framework. We should hear, between now and the time we leave, where this process goes from here and also how you can be engaged. There's a lot of work to be done, there's a lot of work that went into this so far, but there's a lot to do ahead of us. So, to start on that, I'm going to ask Dr. Dan Gregson to start sharing his views. It'll continue with Jim Wilson and the last word and the closing remarks will be from Dr. Greg Taylor.

Over to you. Is this yours?

Daniel: [01:54:44]

No. Thanks, Dan.

Can everybody hear me?


Dan: You know what? Let me help you.

Daniel: So, Dan has asked me to cover what I've learned, where we're going, and how we can engage in the future. You know, to start off with what I've learned, there's a lot of articulate people here with a lot of great ideas. I think that's the first thing. So, congratulations, and thank you for your input. And I sincerely mean that.

I've seen a lot of people with really severe physical, psychological, and financial suffering. You know, as a person who's been treating patients all my life, I empathize with you. I wish I had something today to help you out with. I have to be honest with you, I don't have something today. Doesn't mean we won't have something tomorrow. I don't have something today.

I also heard a lot of concerns about physician-patient interactions, and that's concerning for me. And I think it's something I have to take back to the medical community that we obviously need in some way, shape, or form, better ways to message with patients who are dealing with really complex and chronic medical conditions. How we actually speak with them, how we communicate with them, and how we move their medical care forward, because some of the stories I've heard today really are difficult for me to hear.

And we will-you know, I'm here representing the Association of Medical Microbiology and Infectious Diseases Canada. That message will go out. I'll be discussing this with the CMA and our partners. So, I heard that.

I also heard from you a lot of unanswered questions. You all have questions that are not answered, and so there are a lot of questions we don't have the answers to. This is not the first conference that's been held on Lyme disease.


Female: (Inaudible).

Daniel: Well, it's the first one I've been to, and it's probably going to be the last, unless we have them every year, right? And my hope is that next time you have a meeting that-you know, I might not have-not me-we might not have all the answers, but we'll at least have some answers for you. Right? That's my hope, okay? Because I don't think you should be back here in five years having the same discussions. That's not going to be helpful, right?

You know, you covered-I can't cover everything you guys have covered because I don't have that much time. You know, you've gone over issues with surveillance, prevention, and education, and we're all onboard with that. There's no issues there. I think we've really talked about a better classification of people with illness. Dr. Bowie mentioned it. Our colleague David Patrick from Vancouver has mentioned this sort of classification syndrome of:

"You have a positive test."

"You don't have a positive test."

"You have disease."

"You're treated."

I think we need to capture people, everybody who's being treated, into one of those categories and get them into a database. You know, it doesn't really matter which way I classify you, but we do need to know who you are and how you've been treated, and that includes people who aren't in this room, who've been treated with Lyme disease and actually got better. Some people do get better, I hope. The patients that I've treated with Lyme disease-all the ones I've seen, of course, come from Europe, but that's just my experience.

So, we need to get things classified and then we need to get everybody into a database. Because I hear people here, they've all been treated with antibi-well, how many people have not been treated with antibiotics here?

And have chronic symptoms?

So, the vast minority are not-how many people have been treated with long-term antibiotics?

So, a large number of people. And, I guess my question is-the stories I hear, some people get better, some people don't get better and go on different drugs, some people get better and then go off and come back on drugs. And I think the loss in that data is that I don't have that information as to who got what and who responded to what. And I think it's really important that at least there's a baseline. We start enrolling people in observational studies as to what is actually happening.

I've heard that there's persecution of physicians. I'm not involved with the College at all. I'm just involved with the science, and I apologize for you because I'm going to have-I do come from a science background. I am evidence-based and it's hard for me to move off the evidence block.

I think the other issue is, we need to really get better access whatever the underlying cause of patients' illness are when they have complex and chronic medical conditions. We need a way to get people in the clinics that deal with that in a complex manner, so we've got multiple groups of healthcare providers engaged with that. Obviously, from what I heard, you know, seeing 17 physicians knowing you have a chronic condition before you see the second or third physician, doesn't help you to go see the 15th, 16th, or 17th. We need to have a better process for dealing with that, and we need to establish that on some basis nationally. I can't guarantee that because the public system is actually provincially funded; it's not federally funded. But those recommendations, I think, are reasonable. We can support those for sure.

The other comment I wanted to make is there's been some repeated concerns about disability, how one defines disability, and from our perspective, disability is a functional classification. It has nothing to do with your diagnosis. There's people with Lyme disease who are better and are working. There's people with Lyme disease who have, you know, post-treatment, have long, long-standing symptoms. And (inaudible) basically it's your functional capacity, it's not your diagnosis, that does this. So, I don't know where this idea that we're trying to prevent disability comes from, because we're really a functionally-based organization.

And I'd like to just end with a question about how we're going to engage. And I want to highlight, you know, we're not always going to agree. I don't always agree with my colleagues. I mean, you'll see us at rounds on a Monday morning.

One guy will say, "I use this."

The other guy will say, "I use this. We disagree."

And that's okay. I mean, I can disagree with my colleagues and that's fine. Going forward, I think we need to really think about how we want to disagree and who we want to be seen disagreeing with. Because the communication we have with the public and with the press when we start to disagree on issues, they get confused. We're confused. They're going to be confused on what the right answer is.

So, as we move forward, at least initially, with the first portion of where we go with the federal framework, my hope is we can identify issues that we can agree on, we can communicate those issues. Those issues, if we don't agree on something, we're not going to be able to get up in front of the public. But we can communicate on those issues to the public and to the government, and get forward motion. If we come out divided, we're not going to get forward motion.

And I think Dan said it quite aptly in the beginning of the meeting here, that we're going to go forward. We need to be tough on the issues and soft on the people. I want to thank you for not sending me any hate mail in the last couple of days.

It's okay.

It's coming. I won't be surprised. How would that be?

Nobody's thrown a tomato. Nobody threw a shoe. And to be fair, you know, at the beginning of the HIV epidemic, there was people standing at the back of the room throwing stuff, so I appreciate how you've, you know, have held those values that Mr. Normandeau requested in check. Yes.

I'd like to thank-you know, I think that this meeting is an opportunity for us to move forward. A lot of people put a lot of work into it. I can't name them all individually. Dr. Taylor, in particular, I would like to thank. The Minister of Health, I'd like to thank. Elizabeth May deserves a "thank you" for putting us forward. I know we had-you're familiar with the fact we had some issues with some of the wording in the initial act. But I do believe that this is an opportunity for us to move forward on a positive note, and thank you all for your participation. You've really done a great job.

Jim: Thank you. Welcome, everybody. This has been a great audience, and I think a very great conference, a great chance for us to get an awful lot said in a short period of time, and I think with all the input and the very good comments from everybody, we managed to achieve that.

I had a whole, big thing written that I was going to read here, but you guys covered it for me. So, that's fantastic. So, I get to keep this much shorter, and get everybody who's tired out of here and on their way.

Dan, I just want to reassure, my comments yesterday regarding AIDS were most certainly not directed at you. I was speaking more of the global shift that happened when AIDS started affecting the heterosexual population. That is when the research funding started coming. And my point being there is: here we are now. We are here now with Lyme disease. We need research dollars. We need patient involvement. We need on-going, multiple centres of excellence. We need cooperation that we just have not seen before in this whole Lyme disease discussion.

And I think the momentum that we've seen here today, we have the opportunity right now to build upon, and we can nudge the Minister of Health and all of their provincial counterparts to head in the right direction to make sure that the patient and their experts are, from this point forward, equal partners in all aspects Lyme disease, all matters of Lyme disease policy. That has got to be the foundation from this point forward. As you see from some of the extremely good presenters that were here during this conference, that wonderful balance came from the fact that we could get together and bring this conference together as it was.

So, we saw different opinions, opposing opinions. That is exactly what we need. We need that continual, opposing opinion. That brings me back to what I had said earlier, is that science, to become evidence, it requires debate by all the stakeholders. If it's not debated, it's not science; it is politics. Politics requires debate. So, either way, we need debate and it's got to be open and transparent. And if it's not, then it certainly isn't evidence when it comes to science.

As a reminder too, relative to the patient involvement, the Canadian Institute of Health Research, in their documentation actually outlines, and they state quite clearly: "patient-involving from the beginning yields best outcomes." And then they reference the international experience that shows that the best outcomes only occur when the patients are involved right at the design stage and at the planning stage. So, that's good information. Already within our Canadian Institute of Health Research, we want to build on that. From this point forward, we are equal partners. And thank you everybody for coming. I think it was a very good conference.

Greg: [02:08:05]

Thanks, Jim.

Can everyone hear me okay? Great.

I, too, like Jim had a prepared speech. Mine was done by a speech writer, and I have to apologize to Cory when I go back, but I'm not going to use it.

I wish I had some words of wisdom to give you, but I don't. You've already said all the words of wisdom. And I thought that rather than a prepared speech, that, as you've done, I need to speak from the heart.

So I want to start by thanking everyone, thanking all of the participants, thanking my tri-chairs, thanking the planning committee. I think Dan and his team have done a spectacular job.

Staff of the Public Health Agency helped prepare this, have done a great job, and I'll be thanking them tomorrow.

Male: We could do it today.

Greg: Can we?

Thank you.

If I was to describe my experience in the last few days, and I've been watching and listening, the only thing that comes to mind is, "Wow." That's the only thing I can think of. It's just been an incredible learning experience for me personally in the last few days. And it's just been difficult to describe, and difficult to describe the pain that I saw in people and the anger that I saw in people, but as one of your facilitators said, the hope. And the hope that I've heard throughout has just been incredible.

People aren't here to bitch and complain, people are here to make it better. And that's great, and that's why we're all on the same page. That hope and, clearly, the commitment, and clearly the altruism-because every comment I heard was about making it better for other people and making it better for other Canadians. So, we're on the same page for that one. Because that's our job too.

I think also wanted to thank you for a very vivid reminder with us, where we work. And I don't get a chance to talk to real people most of the time in my job. I talk to representatives and I talk to politicians. I don't get a chance to talk to real people like I used to do when I practiced clinical medicine. But the vivid reminder that if what we're doing at the Public Health Agency and at the federal government is not making a difference to individual Canadians, then we're not doing our job. So, I want to thank you for that. It's very moving.

It's very moving, and it's part of why I do this job. People ask me why I left family practice to go into Public Health. And in family practice, as you know, you can make a big difference in the lives of two or three thousand people. In Public Health, you get an opportunity to make a difference in the lives of 37 million people and we need to make that difference, clearly. So, thank you for that reminder.

The other reminder is we must engage Canadians better and more. We must engage patients better and more. And you don't need to hear that from me. Our new Prime Minister has also said that on numerous occasions, engaging Canadians. So, very much in that spirit, I think this event that we've had the last few days. I'm typically optimistic kind of person and I like to focus on the good things. So, what's crystal clear-and I think we're lucky as Canadians. In fact, our colleagues in the States look at us in envy, believe it or not, from the CDC, Center for Disease Control. We're natural collaborators. And so, I didn't hear anybody today say, they know exactly what to do. "Leave us alone. We'll get it done." Not one person. Everybody's saying, "We need to work together." So, we're natural at that, and I think we need to be lucky and proud of that.

I like to focus on where we agree. Everyone has agreed we need better surveillance, both patients and ticks, no question. Everyone's agreed we need better education, better prevention. I said that in Power and Politics yesterday, people agreed that I'm sure most Canadians would prefer not to get sick at all than be treated well. If we can prevent Lyme disease, then that's the ultimate goal. That's what Public Heath, where I work, is all about, is preventing disease. Everyone agrees we need treatment guidance, improved treatment guidance. We need best practices. So, we all agree upon that.

And It's really interesting because this wasn't intended to be a consensus conference. This was intended to simply get input and listen to folks, but I hear a lot of consensus. I hear a lot of folks saying exactly the same thing, on both sides of the fence, which I think is very positive for the way forward.

Certainly, what next? As you know, the act stated that we would produce a federal framework. I like to put in "for action," because where I come from, the bureaucratics-if it's not entered "for action," again, it's a nice document that's not very useful. Back at the ranch, we have all kinds of documents that we spent hours producing that go nowhere. This has got to be for action.

So, we're supposed to gather the information, and we will do that, guaranteed. All of the input from this last few days will be posted, free to everybody to see. It's being recorded, that'll be posted. Everybody's going to try and capture as much as we possibly can.

As we develop this framework, I think we should do it very quickly. Remember, the framework is a road map for action. The real work's going to happen after we get that out of the way and get at the real work that needs to be done. I don't want us to waste a lot of time doing this framework and getting the wording just right. Let's just get on with it.

So, you will have an opportunity to put in the framework. We will share drafts of that. We will get input. In terms of engagement, our point contact is Jim. It's been that way for a long time. He's our conduit into you. And so we will be sharing, and we'll do our best to ensure that your voices are represented in this one. And I think that you have to remember, this is not the first. Although this is one of the best, this is not the end. We do need to, and I want to echo Jim's words, we need to engage on an on-going basis as partnerships, partnerships with patients, partnerships with Canadians. That's where we need to go.

And so, again, I don't have any brilliant ideas. You have the brilliant ideas, although I must say, some of them are great. "Un-suck at sharing information."

I got to tell you how true that rings. We do surveillance all the time across Canada, with the provinces and territories, and man, that could apply to everything we do. Sucking it out of the provinces sometimes.

I was particularly struck by the citizen-scientist, I thought that was kind of cool. That was really cool. Building on expertise in places you don't expect it to be. And we put ourselves as experts, but it doesn't mean we know all the answers. And I think both of my colleagues have said, "The science is one thing. Interpreting that science in terms of what does it mean, what do you do about it, is a little bit different." So, I thought that was good.

Transparency, that's key, absolutely key. And we will certainly do the best that we can to be ensure [sic], as we go forward, we're as transparent as possible.

Building the business case-that was pretty savvy. In the political environments that we live in, when politicians have multiple conflicting priorities, multiple groups looking for money, you got to build a solid business case for investment. And I think there's lots of information here that will help us build that business case.

And the last one which-I thought the drawing was great-was sex with the ticks. So, I knew I'm in the right room when they started talking sex with a tick. That was great.


Thanks again. It's been a very moving experience for me, personally. And I do want to thank you all for sharing. There's been some really amazing stories that last few days. And you all took a lot of risk. I've got to say that. A lot of risk. Revealed yourself personally, because you believe, that together, we can work and be more effectively [sic], and I'm there with you. And I look forward to working with you in the future. Thanks so much.

Dan: Thank you tri-chairs. Three quick messages before we move back to our loved ones.

First of all, to the question of video sharing. We had mentioned the privacy clause when we started this conference. Of course, if there's a camera that was directed to you and you don't want your image used, you've got to let them know. You know, it's 2016, we live in a modern technology era. You can do whatever you want with the images, of course, you know, especially the ones on the ticks that was over here, but I leave that to you. They're going to be selling this soon.

Those of you who have other ideas to leave with us, don't forget there's a box at the registration that you can drop them in.

And finally, please, safe travels. And stay good and stay well. And those who want to join the Lyme challenge, just show up at the front of the room.

So pleasant stay, safe journey home. See you soon

Jim: I just wanted to give credit to Janet Sperling. That analogy between science and evidence and politics and debate and everything, that all came from Janet Sperling.

Page details

Date modified: