Tuesday, April 24, 2012

3 Commentary: Critical Mass In The Media On Lyme Disease

It's April, and it's already that time of year again for Lyme disease: The media has been stepping up its coverage of Lyme disease related news items in preparation for May, which is Lyme disease awareness month.

For example:
Health Department Issues Warning About Ticks (Ohio)
10 Tips To Beat The Ticks (msnbc)
Lyme Disease Is On The Rise In New Jersey And Pennsylvania
Arkansas On Track For More Tickborne Illnesses This Summer
Scientist Says Lack Of Acorns May Mean More Lyme Disease In Maine
Minnesota: State's tick season crawling to an early start
Tick bites on the rise in Central Florida, county says
Tick season gets an early start (Iowa)
It's tick season in Lake, Mendocino counties (California)

Canada has been getting in on the action:
How to prevent disease infection after research finds Lyme-carrying ticks are on the rise in Canada
Toronto: Climate change causes Mississauga infestation
Tick season is here (Kamloops)

And also the BBC in the UK:
Great outdoors? Ticks, pets and the risk of Lyme disease
Seeking to solve the Lyme disease puzzle

All these links are to articles I just grabbed off Google News in a matter of seconds. There are so many news items listed that I could not mention them all and just selected links representative of the fact that  Lyme disease is getting more attention across the United States and the northern hemisphere in general.  If I search further afield, I'm sure I could include links from France, the Netherlands, Germany, and other countries.

This year, I noticed that the news cycle has been slightly different. The media has been discussing that tick season was going to be earlier than usual and worse than usual when it was just barely into the new year. And with this has come more stern warnings to the public to protect themselves from tick bites and prevent infection.

The media has been on top of things, it seems. How about me? As someone who has suffered from Lyme disease and coinfection, I've been thinking about my own role in how to participate activities related to this year's Lyme disease awareness month.

Last May, I wrote a series of articles for The Daily Kos for Lyme disease awareness month. Time is obviously running out to decide whether or not to write again this May, and I am leaving the decision to the last minute just as I did the previous year.

I think traditionally calling attention to Lyme disease prevention in May has made sense. But I can't help but think that being aware of all tickborne infection throughout the entire year is a better approach.

One reason why is because the world is changing. Global warming and fluctuations in the ecosystem can lead to different tick breeding times and infection patterns. Local microclimates and winters which are milder on average can lead to peak cases of Lyme disease being reported in autumn and early winter - as they have been reported in California and parts of Oregon. And if Australia turns out to have its own increase in Lyme disease cases which run according to their seasons, then timing for prevention and education would differ from North America by six months.

Another reason why is that it doesn't hurt to put the message out there all year round is because more people are likely to hear it and be aware about the potential problems tick bites can bring before they are in circumstances where they are more likely to get bitten...Hopefully they won't get bitten at all.

Any month where people are going to be going outdoors and placing themselves in environments where they are likely to encounter ticks is a month where one should take the steps necessary to protect themselves from tick bites.

My own basic online version of tickborne disease prevention education
has been this page: http://campother.blogspot.com/2011/06/video-tick-removal.html

It has two videos - one an animation about preventing oneself from being bitten by a tick and another about how to create your own tick removal kit.

Overall, I think there is a fair amount of information available about prevention and avoidance of Lyme disease and other tickborne infections. And it's good to repeat this information and give people reminders.

The Fear of Taking It Too Far?

From my own personal perspective - after years of reading articles about the prevention and avoidance of ticks - I'm in a position where I'm trying to figure out what seems to be the opposite problem: how not to go overboard in preventing and avoiding tickborne infection.

And it is a good question: What exactly is going overboard when one has had their life changed entirely (and not in a good way) by having contracted a tickborne infection? Some people might argue there is no such thing as going overboard.

I know it's possible that some day I could be hiking and get bitten by a tick again. That concern is real. The fear behind getting another infected tick bite is real. And I have asked myself, "Do I really want to hike again?"

Hard question. But it's still difficult to say no. In terms of risk reduction, I would rather give up living with a pet than give up spending time outdoors.

I love the great outdoors, and I miss hiking and camping - two activities which put me at the most risk for tick bites. I'm not doing either these days due to fatigue, pain, and lack of stamina. But if I were to suddenly become completely well again, I would have to think twice about how I could return to these activities and remain unscathed by ticks.

There has been a sense of loss that comes from not engaging in activities I once used to do all the time.  Hiking was a walking meditation for me that worked better than sitting in a crowded room full of people doing yoga poses. And cheaper, too.

Out in the woods, I could be alone with my thoughts and close to the earth. I could get in tune with my body and push its limits without anyone watching. I could stretch my muscles, climb rocks, and see how far I could go.

Today I feel weak and broken. I miss feeling stronger. I miss being out in nature, in the elements, encountering wildlife.

I also miss sitting near a campfire, eating and drinking with friends while telling tall tales and bad jokes... It's amazing how much I took for granted that I now miss.

I've figured out that there are things I could do to ease back into the activities I love to do while lowering my risk. I could focus on cycling, swimming, sailing, canoeing, scuba, urban walks, and hiking and camping in rocky mountainous and desert areas where ticks are far less likely to be encountered. It might take more advance planning to do some of these things - but time outdoors wouldn't have to stop. Activities may just need to be modified to alleviate my concerns.

But all this is only going to happen once I am well enough and have energy enough to do these things at all.

Shifting From A Narrow Focus On Fear Of Ticks To Action On Chronic Lyme

From where I sit, I think the awareness message has to be broader than "ticks are out there, they carry nasty infections, protect yourself from their bite"... I think the message has been getting out there, little by little, that if one does get bitten that early diagnosis and treatment is crucial.

But the bigger message which has to get out is that more research on preventing and treating late stage chronic Lyme disease is needed because this is the one aspect of Lyme disease which is the most damaging (and controversial) of all.

The science needs to be brought to public light from those who are up to their ears in it. I'd like to see more researchers being interviewed and not just patients. I'd like to see doctors discussing how much - and how long - these infections can affect one's quality of life. I'd like to see various people discuss the Embers' study on national TV. I'd like to see someone have the balls to actually discuss whether or not there can be a persistent infection in Lyme disease and mention all the studies which have been done to date on both - or rather, all - sides of the fence. I'd like to see a genuine open scientific debate.

I see it as I call it, and how I see it right now is that the dialog about Lyme disease needs to be taken past the human interest story and past the public health department's annual warnings about increasing cases of tickborne infections. A good move in this direction has been discussing the impact of global warming on the spread of ticks. An even better move would be to discuss what we can do to stop the most serious impact that Lyme disease has on us, our families, and our pets in the form of chronic and persisting symptoms.

A call for more research is needed. A call for more young people to study microbiology and immunology to better understand tickborne infections is needed. A call for more surveillance in new latitudes is needed. A call for more detailed public education on Lyme disease is needed. And a call for more serious candid discussions from the media - and not just daytime TV sensationalism - is needed.

How do we get from here to there? If I have any role in this, then it's going to have to be directed towards answering this question - whether it's May or not.

Image credit: © Jarek Tuszynski / Wikimedia Commons / CC-BY-SA-3.0 & GDFL


  1. For some reason, this was a hard entry to write. I've made a few small edits to it, mostly in terms of style and not content.

    Lately I have been having a difficult time focusing and having more trouble writing. I feel exhausted a lot. I am talking to my doctors and trying to figure out what precisely is the cause - I don't know how much of it is related to having tickborne illness and how much of it is something else.

    Either way, sorry if I ramble. Seems to be coming with the territory lately.

  2. Camp another excellent post and much of what you say is shared I am sure by so many- how indeed do we get open meaningful dialogue between both camps, I am rather hopeful that the meeting in Canada recently moved in that direction but still await some feedback which will no doubt be on Can lyme soon.

    More importantly how do we get our media to really do good investigative journalism both in the newspapers and on the TV many of us try and here in UK only seem to get so far and then the brick wall comes up I would love to know what they find when they look at their screens that frighten them off from covering this - I know a telephone call to SOC put the kybosh on the last serious attempt from one journalist I was working with - SOC has gone now though but with Porton Down being the so called 'experts' what line will they take?
    I will be interested to hear any good ideas but have run out of them myself at present.

  3. Thanks, Joanne. I'm glad you liked it. I felt like I rambled on - and I thought the same of my post on Dr. Phil. I had a lot of ideas related to the same subject, and rather than break them down into separate posts, I put them all in one. This has been part of my experience with chronic Lyme/post treatment Lyme disease: My focus and mental energy are variable.

    Regarding the rest of your comment, I not only want to see meaningful dialog between the camps - I want to see them have it out in public. It would be informative to have the equivalent of a televised presidential debate - except have it be a town hall session over the issue of Lyme disease. It could be a debate which is televised over multiple sessions and not just one night. It may not solve everything but it would at least go far to outline what the arguments actually are.

    How do we get the media to do really good investigative journalism in the US and UK? On your end, I would think approaching a show like Panorama would be excellent. They have been around for ages, and they made a very interesting documentary on phage therapy back in the 1990's which I have linked to on this site.

    I'd also be thinking of starting with local universities and seeing if one can talk to microbiologists and others who work directly with the bacteria and see if they'd be willing to be interviewed - maybe at first through the university radio station. That way, at least students will be exposed to the issue - as well as anyone who listens to their webcast.

    I think going directly to TV shows which are sensationalist in approach is good for getting what I call "shotgun exposure": lots of people will get a soundbite about a problem in a short period of time. The message gets out there. However, the fidelity of the message might not be that clear.

    In order to really outline what is and isn't understood about Borrelia and its coinfections, it needs more time and a more academically oriented forum. That's where I'd begin... A seminar, a presentation, and a radio interview or three with people who know what they are talking about and are at least neutral yet highly educated about the infections involved would be a move in the right direction. I'd do that at one location, then try for the next.


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