Here you can read the letter from Dr. Strang at, Strang MLA’s/MP’s followed below by a copy of our reply that was also sent to all Nova Scotia politicians, federal and provincial.
Dr. Strang acted in a manner that is contrary to the principles of open science in that he deliberately did not mention the reams of “peer reviewed”, “evidence based” research papers that indicate the Infectious Disease Society of America (IDSA) guidelines are full of misinformation, “Laboratory testing for LD in Nova Scotia follows the guidelines established by the Public Health Agency of Canada and the Centre for Disease Control and Prevention in the United States. These guidelines have been endorsed by the Canadian Public Health Laboratories Network and the Infectious Diseases Society of America”. Endorsement by these good old boy lobby groups is not something to brag about.
He failed to acknowledge that Health Canada had published a letter in Canadian Adverse Reaction Newsletter, Volume 22 – Issue 4 – October 2012 showing that the Infectious Disease Society of America guidelines and their Canadian marianettes got it wrong, testing produces too many false negative results, the most harmful to the patient, just as the Lyme disease advocates and scientists around the world have said for almost 20 years. Strang and his peers adopted a testing protocol knowing that the United States Center for Disease Control clearly stated it was, and is, only for surveillance, not accurate enough for human diagnostics, another fact his beloved IDSA simply ignore. Canadian Infectious Disease doctors Canada wide have refused in writing to see any patient that did not pass that flawed protocol. Dr. Strang has now officially endorsed his support for the Infectious Disease community to do what they want, when they want… abandon ethics and is attempting to co-opt our elected representatives into this unprofessional tract using his tax payer funded salary to do it. This is bureaucracy at its worst.
What does this say for the thousands of Canadians who had the “official” endorsed testing over the past 20 years, only to be given false negative results many orders of magnitude more than the few positive tests? How many are permanently disabled now? How many are deceased? How many lost their homes, their families through divorce? What does this say about the cost to taxpayers who support these thousands of people and continue to pay for revolving door medical visits and expensive tests (chronic patients are the largest user gorup of the medical system). No one knows, or do they? The Medical disability insurers save a fortune by accepting only the IDSA guidelines using the guidelines via their Canadian Infectious Disease physicians of choice to deny patients Canada-wide. The relationship between the insurers and the IDSA has been shown in United States congressional hearings.
One must wonder why Dr. Strang went to such great lengths to misinform every politician in the Province of Nova Scotia. There is little expertise and professionalism in his alleged experts. Clearly his agenda is to enforce dogmatic, behind closed door decisions while refusing to allow victims and their experts into the policy making process. CanLyme has experts in many related fields of expertise on four continents who don’t buy what Dr. Strang is selling.
It is time government, other than their “expert” bureaucrats have a look beyond the rhetoric, and work with patients and their experts (who are scientists not bureaucrats or lobbyists). It is time government look at legislating protection specific to Lyme disease for doctors who refuse to follow his dogmatic “diagnosis in a box” approach. Several US states have now enated such legislation. Also, as other states have done, an oversight committee should be structured that will have an equal balance of patient’s and/or their experts with the government bureaucrats. Patient’s deserve the right to have a voice in policies that affect their life outcome.
Some, but not all, Canadian “evidence based”, “peer reviewed” research papers that have been ignored are;
December 11, 2012
Dear Nova Scotia MLA/MP:
RE: Lyme Disease in Nova Scotia
A concerned citizen has brought to the attention of the Canadian Lyme Disease Foundation some serious misinformation being distributed by the Nova Scotia Chief Medical Officer of Health. Dr. Robert Strang sent his letter to all MLAs and MPs in Nova Scotia, and this letter is dated November 28, 2012.
I am a board member of the Canadian Lyme Disease Foundation and would like to respond to this letter. Specifically, Dr. Strang stated that: “We are aware of the Canadian Lyme disease advocacy group, CanLyme, who claim that the testing and treatment of LD is inadequate. However, the testing methods they promote, and the ones used by many private labs in the US, are not endorsed by infectious disease and laboratory experts.“
The Canadian Lyme Disease Foundation (CanLyme) has never promoted specific lab testing methods with the exception of PCR testing of human biopsy and autopsy samples. CanLyme has always maintained that Lyme disease is a clinical diagnosis that may be supported by serology but is not reliant on serological support by the current two-tier testing protocol used in Nova Scotia.
Lyme disease remains a clinical diagnosis since available evidence is too conflicted to codify the diagnosis and treatment of this complex disease. After nearly a decade of hard work by dedicated CanLyme volunteers who provide broader and international perspectives on this disease, Health Canada, in the Adverse Reaction Newsletter 22(4) October 2012 (http://www.hc-sc.gc.ca/dhp-mps/medeff/bulletin/carn-bcei_v22n4-eng.php) admitted that there are serious limitations in the current serological testing algorithm and that both false negative and false positive results mean that Lyme disease remains a clinical diagnosis. Nowhere does Dr. Strang reference this important addition to the debate.
It is also important to note that in February of this year, Dr. Alan Ronald, an infectious diseases specialist at the University of Manitoba was forced to publish a retraction in the Winnipeg Free Press where he made unfounded statements about false positives from healthy people issued by a California lab known for issuing positive Lyme results (http://www.winnipegfreepress.com/opinion/letters_to_the_editor/have-your-say-140534633.html?device=mobile).
However, we are pleased that Dr. Strang has acknowledged that Lyme disease has received a considerable amount of attention from the media. The Canadian Lyme Disease Foundation continues to work in the public sphere and encourages you to maintain awareness of Lyme disease and the responsibility of public health officials to consider the full spectrum of evidence, unhindered by historical biases.
In addition, we emphasize that the current best evidence firmly demonstrates that the genetic diversity and ecological complexity of the causative agent of Lyme disease confounds the diagnostic situation in Canada. This evidence is reviewed in the following peer-reviewed publications, available as open access at:
Sperling and Sperling 2009. The Canadian Entomologist https://canlyme.com/2012/07/21/lyme-borreliosis-in-canada-biological-diversity-and
Sperling et al. 2012. Open Neurology Journal. http://www.benthamscience.com/open/toneuj/articles/V006/SI0078TONEUJ/94TONEUJ.pdf
Transparent and respectful discussions between CanLyme representatives and the Chief Medical Officer of Novas Scotia would be a positive step in a debate that has been hostile towards minority opinions, even when those opinions are based on substantial numbers of peer-reviewed research papers.
Lyme disease research is progressing rapidly and doctors should be alerted to the fact that current serological tests are inadequate. Meanwhile, I appreciate your attention as we set the record straight about the role of CanLyme, and I would be pleased to provide further information or discussion if you would like to follow up.
Board Member, Canadian Lyme Disease Foundation