Friday, February 20, 2009

Signatures and stuff

Back in November you will recall we announced a petition to be directed to the Ontario Legislature (you can read the previous post here, complete with the full text of the petition). The response has been tremendous, with over 700 signatures collected to date. Thank you and please keep them coming! If you would like a copy of the petition to gather signatures in your area, please drop us an email -- we'd be happy to send you a copy. Remember that this petition is directed to Ontarians as it's for our provincial legislature, and it needs to be signed in person (no electronic signatures).

The screenings of the award-winning film Under our Skin have been a great success. The requests for additional screenings continue to pour in. While we are working on that, we would like to extend an invitation to you -- if you know of a suitable venue (with projector, DVD player, big screen and sound) and have a target audience, please contact us and we'll do our best to work with you to make it happen. Lyme Action has purchased a version of the film with community screening rights for a variety of settings.

Lastly, a thank you to the many who are supporting us financially. Your gifts are an important contribution as we continue to increase awareness and lobby our government officials for improved Chronic Lyme disease public policy in Canada. Please consider making a donation today. Secure donations can be made through the PayPal link on this site. Donations to Lyme Action Group can also be made at any TD Canada Trust branch.

Together we are making a difference!

Tuesday, February 10, 2009

Half Million Dollar Donation to Lyme Research in Canada

Some amazing news to share -- yes, on our side of the border even.

In a press release put out today, the Canadian Lyme Disease Foundation (CanLyme) has announced receipt of a half million dollar donation toward their goal of establishing an independent Lyme research facility in Canada.

The donation was made anonymously by a family that had 2 members afflicted with the illness -- and went through the same nightmare faced by most Lyme patients in Canada.

“This family struggled within the Canadian health care system, as are thousands of Canadians, and were let down by poor testing and a false confidence within the medical community that Lyme disease is rare in Canada. The medical leadership in Canada, including the federal and provincial governments are letting us down. Doctors and patients are not told of the serious limitations of the tests used - limitations acknowledged by the global science community.”

You can read the complete press release here.

Monday, February 9, 2009

The poli-ticks of Lyme

Now if we are completely honest, how many of us with Lyme disease haven't secretly wished for a politician to get sick with this illness? Not wishing anyone harm of course, but just maybe things would change then, right? Well, in the do-ya-one-better category, how about when the spouse of a prominent politician gets sick with this devastating tick-borne illness? Seems someone's wish came true.

In the good ol' State of Connecticut, no less, the husband of State Democrat Kimberly Fawcett became sick with Lyme disease last summer, according to an article in the Stamford Advocate (State joins Lyme debate). But the standard 3-week antibiotic treatment didn't cure him and he soon relapsed. When he sought additional treatment for Lyme disease, he was told to find another doctor! They were forced to travel out-of-state to find someone willing to take on the case.

In response, Fawcett has introduced a Bill "that will extend protections to doctors needed to allow them to freely diagnose and treat patients with Lyme disease. The bill will allow doctors treating Lyme disease patients to diagnose the disease clinically and consider all treatment options, including long-term antibiotic therapy." For a complete press release from the House Democrats website, see Representative Fawcett Champions Lyme Disease Legislation).

If you would like to send a note of thanks and encouragement to Fawcett, here is the address at her Hartford office.

Sadly, there is no similar good news to report on this side of the border with our neighbours to the south. While the Public Health Agency of Canada has finally initiated a review of our Lyme guidelines, they have so far neglected to include the Canadian Lyme Disease Foundation (CanLyme) in that process. There are several knowledgeable Lyme-literate doctors on CanLyme's board of directors. The idea that Public Health is proceeding without their direct up-front involvement is beyond words and leaves great doubt as to the meaningful outcome of their efforts.

"We have clinical expertise and evidence-based peer-reviewed science that needs to be interjected into the process, that is being ignored or not given due consideration in an open transparent forum," writes CanLyme President Jim Wilson. He has asked all those concerned to "write to the Minister of Health urging her to insure the Canadian Lyme Disease Foundation's representatives get included in any and all discussions, panels, committees, or focus groups funded all or in part by the Public Health Agency of Canada to do with tick-borne disease." Here is a link to contact our Federal Minister of Health. He further suggests copying your email to your local MP.

To the husband of
State Democrat Kimberly Fawcett, we are pleased to hear you are getting appropriate treatment and wish you a full and speedy recovery. To our Public Health representatives... well, you can make your own wish for them.

Friday, February 6, 2009

"Under our Skin" - Polski GTA

Lyme Action Group is pleased to announce that a special screening of Under our Skin, the award-winning Lyme documentary film, has been organized for the Polish community of the Greater Toronto Area.

Ok, before you ask, no -- Open Eye Pictures has not released a multi-lingual version of the film. Not yet anyway. The film itself, will still be the English version. However, the introduction and discussion following the film will all be conducted in Polish and hosted by Dr. Jozef Krop.

A quick plug to add in here. If you know of a group that would be interested in seeing this film (a school, church, club, etc.), please contact Lyme Action and we will do our best to work with you to make that happen. We have purchased a version of the film that allows us to do community screenings in a variety of settings.

If you know Polish, please read on!

Środa, 11 lutego, 2009
Godz. 19:00
Związek Narodowy Polski w Kanadzie
71 Judson Street, Toronto

"Parksinson, Alzheimer, stwardnienia rozsiane, schizofrenia, depresja, a może ukąsił cię kleszcz i masz boreliozę?"

Zapraszamy całą Polonię na spotkanie poświęcone groźnej chorobie o nazwie borelioza lub Lyme disease.

Wstęp wolny. Prosimy o donacje na Lyme Action Group.

Wednesday, February 4, 2009

Lyme article in Vitality's February issue

Hot off the press! Check out the excellent Lyme article in this month's Vitality Magazine. The piece, by medical science author Ms. Helke Ferrie, is subtitled "An Emerging Epidemic with No Effective Means of Treatment in Ontario".

You can access the complete article at -- look for print editions at your local health shop.

You should be aware of some important correspondence that Lyme Action sent off last month. Helke does a nice job of introducing these letters in her article. Once we have ascertained how they are being received, we'll share more info about them with you. But to begin with, last month we wrote to the Ontario Attorney General, the Minister of Health, and the Premier, presenting our arguments and suggesting it would be highly appropriate for us all to sit down together and talk things through. Please consider writing them yourself and demanding the same -- their respective contact pages are hot-linked above.

Here is the concluding section of the Vitality Lyme article:


Invariably Lyme patients and doctors will ask, “How is this possible?” Some years ago, exasperated by the problems then facing environmental illness patients, I asked the same question of criminal lawyer Michael Code, then of Sack Goldblatt Mitchell and now a professor at Osgoode Hall. His reply was: “It is not necessary to understand the motive for a crime. It is only necessary to prove that it is a crime.”

To stop this crime it is necessary to be correctly informed. The sources given below provide the best available information. Once you are informed, join the efforts of Lyme Action Group and CanLyme by writing to your MPP and demanding action. Canada cannot afford another blood scandal or another SARS crisis. In Ontario, patients and doctors alike cannot be expected to endure the policies of antiquated regulatory agencies that ultimately ruin human lives.

Also, Ontario’s Regulated Health Professions Act must become patient-centered and research-user-friendly for doctors and reflect what Health Minister Caplan was reported to have said in the Toronto Star last November: “I want to support a health-care system that allows people to... try new things. Innovation should be the hallmark.”

Lyme Action Group summarized the Lyme Disease crisis best when they wrote in their January 14 letter to the Attorney General: “This untenable situation ensures that the lowest common denominator of medical knowledge will continue to maintain a correspondingly low standard of innovation, and Chronic Lyme Disease patients will have to continue seeking help abroad. We feel, this is an intolerable situation for patients and for society.”