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 VitalityMagazine.com -- 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:

THE CHALLENGE AHEAD

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.”

Burlington screening of "Under our Skin"

Lyme Action Group is pleased to sponsor a screening of this award-winning documentary film in Burlington, Ontario.

Date: Friday January 30, 2009
Time: 7:00 pm
Location: Compass Point Bible Church - Eaglesfield Campus
2501 Eaglesfield Drive, Burlington
(east of Dundas and Brant Streets in Burlington)

Following the film, a discussion will be held with Dr. Jozef Krop, MD, and Lyme Action Group.

Admission is free (donations will be accepted). For a map and directions click here. Refreshments will be available following the event.

This eye-opening film investigates the untold story of the massive spread of Lyme disease throughout North America. The American Centers for Disease Control estimates 200,000 new cases of Lyme disease each year in North America -- that's more than AIDS and West Nile Virus combined. Lyme disease manifests with symptoms of virtually all known neurological and autoimmune disorders including MS, ALS, Alzheimer’s, Parkinson’s, chronic fatigue, arthritis, fibromyalgia, and autism. Delayed diagnosis results in chronic illness. Chronic Lyme disease is detectable, treatable and reversible, yet thousands are suffering due to misdiagnosis. In Canada there is no readily available effective screening or treatment for Chronic Lyme. For one of the most powerful human rights stories of the decade, do not miss this event.

Check out this trailer to get an idea of the magnitude of this powerful film:


Here is a link to download a poster for the event (pdf, 11x17", 2 MB).

For more information about this film, including additional film excerpts, please visit Open Eye Pictures online. Any questions about the event can be directed to Lyme Action Group.

Here is a welcome message from the Mayor of Hamilton.

Congratulations to our raffle winners!

Over the last few months there have been a number of raffles held to raise funds in support of our advocacy efforts. Thank you to everyone who supported us so generously -- it is much appreciated. These funds allowed us to distribute informative brochures at the recent Health Expo in Toronto, as well as organize community screenings of the award-winning Lyme documentary Under our Skin.

Most of these raffles were based from the Meadowvale Court Health Centre in Mississauga. A sincere thank you to the Health Centre for supporting us in that way. Thanks also to everyone who worked so hard selling tickets.

Our winners are listed below. Congratulations to you all!

• The gift basket was won by Mrs. Sheila Harrison of Newmarket.
• The afghan was won by Mrs. Betty Jean Steels of Unionville.
• The gingerbread house was won by Ms. Bev Randle of Bolton.
• And the winner of 2 front row gold seat tickets to see the Maple Leafs play the Florida Panthers was Mr. Carlo Pavan of London.

CT Attorney General versus the IDSA

Back in 2006, the Infectious Diseases Society of America (IDSA) published new practice guidelines for Lyme disease. These caused a bit of a stir in that they blatantly disregarded the significant body of scientific evidence relating to Chronic Lyme disease. In effect, the IDSA took the increasingly untenable position that Chronic Lyme did not even exist. This was devastating to the Lyme community, providing the insurance industry with just what it needed to further marginalize Lyme patients.

The position taken by the IDSA was so incomprehensible, that the Attorney General (AG) of the State of Connecticut took the unprecedented action of investigating the IDSA. The result? The State's antitrust investigation concluded that there were "serious flaws" in preparing the guidelines. In a May 2008 press release, the AG stated "My office uncovered undisclosed financial interests held by several of the most powerful IDSA panelists. The IDSA's guideline panel improperly ignored or minimized consideration of alternative medical opinion and evidence regarding Chronic Lyme disease, potentially raising serious questions about whether the recommendations reflected all relevant science." In an agreement reached with the IDSA, a new conflicts-free panel will be convened to review the guidelines. The new panel will be selected by a mutually-agreed-upon ombudsman. None of the original panelists will be permitted to participate.

Good news, right? Well, in spite of the investigation's successful outcome, the IDSA continues to downplay the whole event, maintaining their process is both "rigorous and transparent". But consider the following. In March 2008, the IDSA lobbied against a bill that would promote improved Lyme prevention, education, treatment, and research activities. Why? Because of "the bill's repeated references, overt and implied, to a condition that has been described inaccurately as 'Chronic Lyme disease'." The position in their letter to the US Senate is abundantly clear -- "the notion that some spirochetes can persist despite conventional treatment courses... is microbiologically implausible." Contrast that with this statement from ILADS: "There is a plethora of documentation in the US and European medical literature demonstrating by histology and culture techniques that short courses of antibiotic treatment fail to eradicate the Lyme spirochete." Somebody's out to lunch here.

And reading the IDSA's May 2008 press release, coinciding with the one from the AG's office, one could be forgiven for concluding these two press releases are referring to completely different events. Despite the clearly stated criticisms by the AG, the IDSA denies any wrongdoing whatsoever, and looks forward to putting to rest these "unfounded" assertions. You are encouraged to visit the press release on the IDSA's website, as it provides a convenient opportunity to give your opinion about what they are doing -- just scroll to the bottom of the page and click the score of your choice. You can even add a comment... vent a bit, you'll feel better for it.

Finally, just in December, Infectious Disease News (a medical newspaper for Infectious Disease Specialists) included Settling of the Lyme case with the Connecticut AG in it's Top 10 stories of 2008. In reference to the pending rework of the guidelines, the newsletter's Chief Medical Editor says "I don't expect [the reworked guidelines] to be significantly different...". Nice to see more of the "rigorous and transparent" attitude reflected in this publication.

Ok -- that's all in the United States. What's that got to do with Canada? Quite a lot actually. In the absence of substantive Lyme guidelines in Canada, our medical establishment relies heavily on US guidelines such as those from the IDSA. In correspondence between CanLyme and Canada's top Public Health Officer this past autumn, Public Health's Dr. Butler-Jones states "It is my understanding that the [IDSA] guidelines remain in place during this review process, and we should not prejudge any of the conclusions." So in spite of "serious flaws" in their preparation, the best advice to our medical community is to stay the course; in other words, for now we'll keep letting Canadians fall through the cracks in our medical establishment.

A new glimmer of hope has appeared recently. In subsequent correspondence from Dr. Butler-Jones to several Lyme patients, his more recent talking points have changed somewhat. He now states "The Public Health Agency of Canada is currently drawing up a structure for writing and reviewing revisions to the original guidelines, as recommended by the report of the 2006 meeting." This is in reference to the National Lyme Disease meeting held in 2006 in which CanLyme representatives participated. The Public Health Agency of Canada has neglected to follow up on this conference's recommendations to date. Very similar wording is found in recent correspondence from our new Federal Minister of Health, the Honourable Leona Aglukkaq. The letters do commit to a process to include opinions of stakeholders and advocacy groups. This is critical for its success -- otherwise it is likely we will simply see a repeat of what happened with the IDSA in 2006. You are encouraged to write to both our Chief Public Health Officer and the Federal Minister of Health to make sure this happens in a meaningful way.

Here is hoping that 2009 holds good health for us all, and that we will finally see much needed change in our medical system with regard to Lyme and Chronic Lyme disease.

Happy new year!

BC's College of Physicians & Surgeons gets a talking to

A Christmas present just in time for the holidays -- last week, a member of the BC legislature (Mr. David Cubberley) sent a strongly worded reprimand to that province's College of Physicians & Surgeons (CPSBC). The letter was spurred by the glib attitude toward Lyme disease reflected in a quarterly bulletin distributed by the College back in October.

In his letter, Mr. Cubberley writes "[the bulletin] reinforces the prevailing lack of awareness among BC doctors. The [diagnostic] approach recommended actually contradicts the policy of the BC Ministry of Health and the BC Centre for Disease Control...". He goes on to note the College's failure to even mention the primary Lyme symptoms of which doctors should be aware, and that the College "compounds the harm to Lyme sufferers by perpetuating the claim that Chronic Lyme disease 'remains controversial', meaning that it may not exist. This equates to a life-sentence for anyone undiagnosed in the early stages (which is virtually everyone contracting Lyme in BC today)..." Well said.

You can read both Mr. Cubberley's letter and the CPSBC newsletter from the embedded links (pdf format). Those in the Lyme community may find themselves uncontrollably cheering as they read this well-written letter to the College. Gradually there are more of our elected representatives in our corner. Keep working on yours.

Virtute et Veritate (from the CPSBC logo)... Maybe the College will find some of this in their stocking this Christmas. This is the season of hope after all.

Merry Christmas

Getting the attention of our elected representatives

A few other noteworthy items have transpired over the last month.

Those of you in the Lyme community may recall that early this year, an MP from Manitoba (the Honourable James Bezan) invited Lyme patients from across the country to contact him with their Lyme adventures -- he wanted to hear from us about our experiences with Canada's medical system. Well, it seems he had a pretty good response. According to a recent article in Nova Scotia's Chronicle Herald, aptly titled It should have been done 10 years ago, Mr. Bezan has forwarded our accounts to new federal Minister of Health Leona Aglukkaq, as well as every one of her provincial counterparts.

"There seems to be a lack of education of our doctors, poor diagnostics and testing, and that has resulted in the virus [sic] having a greater negative impact on the lives of too many Canadians," Selkirk-Interlake MP James Bezan said in an interview. Bacteriological inaccuracies aside, Mr. Bezan hit the nail square on the head.

Elsewhere in Canada, the leader of Alberta's Liberal Caucus, MPP Kevin Taft Ph.D. (aka “the man with a plan”), tabled a private members statement entitled Diagnosing Lyme Disease (pdf format).

"Clearly, there are obvious deficits in the available background information, diagnostic criteria and testing recommendations for Lyme disease in Alberta." "I urge this government to work with CanLyme on a formal public review and work with federal agencies to revise Lyme testing."

Have you written your elected representatives yet? Contact your MP and MPP today ( BC, AB, SK, MB, ON, QC, NB, NS, PE, NL ).

Press Conference at Queen's Park

On 7 November 2008, Lyme Action Group held a press conference at the Ontario Legislature. The purpose was to draw Chronic Lyme disease issues, and the plight of doctors who treat it, to the attention of our elected representatives and to the public. Participating in the event were medical science author Ms. Helke Ferrie, three of Dr. Krop's Lyme patients (Ms. Janet Mitchell, Dr. Graham Kucan, and Ms. Karin Klouman), and Dr. Jozef Krop.

Part 1: Introduction by Helke Ferrie


Part 2: Patient Janet Mitchell


Part 3: Patient Dr. Graham Kucan


Part 4: Patient Karin Klouman


Part 5: Dr. Jozef Krop


Lyme Action Group wishes to sincerely thank Ontario MPP Monte Kwinter, who kindly sponsored this event.