Monday, June 14, 2010

CBC Radio -- The Current

Good morning Canada! -- and beyond.

CBC Radio listeners were treated to an interesting conversation about Lyme disease this morning. Anna Maria Tremonti, host of the The Current, interviewed two doctors; Dr. Maureen McShane, a physician practising in New York State, and Dr. Nicholas Ogden, with the Public Health Agency of Canada.

So let's compare these two fine people. Dr. McShane is a practising physician. Dr. Ogden researches ticks. Dr. McShane treats Lyme patients. Dr. Ogden researches ticks. Dr. McShane is a recovered Lyme patient herself, and has experienced the whole gamut of the Lyme adventure with which so many of us are intimately familiar. Dr. Ogden.... researches ticks.

I'm sure you're getting the point. Dr. McShane has a wealth of real life experience, both personally and through her practise. And while Dr. Ogden cautions about over-reacting to the Lyme crisis, Dr. McShane knows first hand that Canada's current testing protocols are a colossal waste of time, and that the result of a delayed diagnosis is devastating for Lyme patients -- resulting in long-term chronic health issues and sometimes even death.

And Dr. Ogden's suggestion that we will get a much clearer picture about the magnitude of the disease in our country now that it is nationally reportable... well, that's the kind of material that might well benefit your vegetable garden. The truth is that national reporting of Lyme disease will continue to be a fruitless (and highly misleading!) endeavour, as long as it is based on Canada's seriously flawed testing protocol, with its high incidence of false negative results.

The vast majority of Lyme patients in our country were diagnosed with the help of a good quality test from a fully certified and accredited tick-borne illness laboratory in the United States, while their Canadian lab tests were negative. All of us in that category are not included in those wonderful national statistics about Lyme disease.

Two thumbs up to Dr. McShane for boldly speaking out on this important subject.

If you missed this morning's radio show, you can access it on the CBC website (see Pt2: Lyme disease). Please provide some feedback to The Current -- let them know what you think and encourage them to do more coverage about Lyme.

Wishing you all good health!

Saturday, June 5, 2010

Lyme disease awareness

Well the month of May has come and gone – Lyme awareness month is over for another year. We hope you found a way to mark this occasion and raise awareness in your community.

And what a month it's been! Looking back over recent weeks, there were some important happenings of note.

The province of Ontario has quietly launched a Lyme awareness campaign called Let's Target Lyme!, encouraging Ontarians to “be tick smart”. Why quietly? Who knows. But hopefully they will turn up the volume soon. Thank you to an observant listener who happened across a gardening radio call-in show in the Ottawa area where the campaign was briefly mentioned. There is some really good information on the campaign website, both for the public and the medical community – we commend the Ministry of Health for making this information available. Unfortunately, the website does continue to promote Canada's seriously flawed testing protocol. What the province has completely failed to recognize, is that the result will be catastrophic for countless Ontarians who will be misdiagnosed or have a delayed diagnosis during this prime tick season, adding untold numbers to the ballooning ranks of the chronically ill in our province. Hey! Province of Ontario, if you're listening: Lyme disease is most successfully and economically treated when it is diagnosed early. Canada's current testing protocol, combined with the abysmal lack of awareness in the medical community, makes a timely diagnosis next to impossible. That's got to change.

Lyme awareness is being highlighted in many areas of the province and beyond. Here is a sampling. If you see something in your area, please let us know.

  • The Pitch Pine Post, Parks Canada (a Spring 2010 publication for the St. Lawrence Islands region, print only) – related content on the Park's Canada website (Ticks and Your Health).

Nationally, a big thank you to CTV's W5 for recently rebroadcasting their excellent investigative journalism piece from November 2009 (Out of the Wild).

Last year's successful Lyme awareness radio spots, produced by CanLyme and Magnotta Wines, are back on the airwaves for another season. Here is an excerpt from a recent Magnotta press release, which provides an excellent summary of the current problem in Ontario and throughout the country:

“One of the top ten misdiagnosed diseases in the world which is now found in all Canadian provinces, Lyme disease is a bacterial infection caused by the bite of an infected tick that causes flu-like symptoms in the beginning. Currently affecting millions of people, Lyme disease is curable when properly diagnosed and treated early. However, when misdiagnosed, Lyme becomes debilitating, chronic and sometimes irreversible, even fatal. This multi-organ infection can attack a person’s heart, brain, bones, muscles, digestive system, skin, eyesight, hearing and more. It can cause symptoms that mimic other diseases resulting in a prolonged misdiagnosis.”

John Scott, Ontario's celebrated tick researcher, has coauthored a recently published paper in the June 2010 Journal of Vector Ecology. The paper highlights some very important observations, which help us understand why Canada's Lyme testing protocol is such a colossal waste of time. It is now well-documented that there are many subspecies of Borrelia present in Canada. More importantly, numerous subspecies are known (and have been known for some time!) to be important causative agents of Lyme disease infections in humans. Would you like to hazard a guess as to how many of those subspecies are detected by the Canadian tests? Come on, now – pick a number.... Well, if you chose a number higher than 1, you are sorely mistaken. That's right – Canada's protocol tests for one and only one of the Borrelia subspecies (in research circles, that species is known affectionately as B31). So while our policy makers continue to parrot the party line that we have nothing to worry about, that Canada's tests are based on the best available scientific evidence, the reality is that our protocol is seriously flawed and misses the vast majority of Lyme cases in our country.

Just last week, news broke that Ontario Ombudsman André Marin has been unanimously approved by all parties for another 5-year term as Ontario's watchdog. This, we hope, is good news for the Lyme community. Late last year, Lyme Action formally filed a complaint with the Ombudsman regarding the province's lack of appropriate action on Lyme issues. We have corresponded with every single sitting MPP in our province, and met in person with several of them. There was a Lyme awareness rally at Queen's Park last September. A petition with more than 1,400 signatures was presented in the Ontario Legislature. We met with various persons within the Ontario Ministry of Health. None of it moved the Minister of Health to take action. We hope a sober second look by our now officially-reinstated Ombudsman may precipitate something more substantive from our policy makers.

Here are a few coming events you won't want to miss.

For those of you in and around Toronto, Helke Ferrie will deliver a Lyme lecture at The Big Carrot Health Food Store on Danforth this Thursday June 10th at 7pm. A regular contributor to Vitality Magazine, Helke was the Editor of our book project, Ending Denial. Copies of our new book will be on sale at this event -- no shipping charges!

For those of you in the Golden Horseshoe region and thereabouts, don't miss the next meeting of the Lyme Disease Association of Ontario (LDAO). Scheduled for Saturday June 12th in Acton, the special guest speaker will cover the subject of Medical and Disability Tax Credits – come and learn everything you need to know to maximize your tax credits for next year. For more info, please contact LDAO President Court Steggles. Note that LDAO is a membership-based research and support group. Annual fees are $40, and new members are welcome at any meeting. Full details below -- you can also download this meeting invite, complete with map. Ending Denial will also be available at this LDAO meeting.

LDAO Spring Meeting
Saturday June 12, 2010
1:30pm – 3:30pm
Trinity United Church
70 Mill Street East, Acton

And finally, a big thank you to everyone supporting us through continuing sales of our new book Ending Denial. This will be a powerful tool to communicate with our policy makers throughout Canada. We have already got it in the hands of every single MPP in Ontario. And that's just for starters – your support will help us do much more. For a great overview of the book, see May's Vitality Magazine column by Helke Ferrie.

Wishing you all good health – together we are making a difference!