Lyme Disease.

CORRECTION: Please note that there was an error in the posting of this review. The co-host of Calgary Eyeopener is David Gray, not Paul McLoughlin.

The complainant, Lori Dennis, was angered by an interview with an infectious disease expert talking about celebrities and Lyme disease. Ms. Dennis thought the doctor’s information was inaccurate and perpetrated medical propaganda. She challenged her characterization of the prevalence and severity of the disease. Advocates for Lyme disease have strongly-held views. The science is different. There was no violation of policy.

COMPLAINT

You strongly objected to an interview on the Calgary Eyeopener with Dr. Lynora Saxinger, an Associate Professor in the Department of Medicine, Division of Infectious Diseases, regarding Lyme Disease. You enclosed the letter you had sent directly to her - refuting her statement that celebrities talking about Lyme contributed to unnecessary concern about the disease. You believe that there is not enough concern and the physician was ignoring the severity of this illness. You are involved in advocacy for treatment and recognition of Lyme, and you had this to say to the doctor:

The media fuss made by celebrities like Shania Twain and Avril Lavigne is just histrionics I suppose. It is their influence that most likely accounts for millions around the globe 'faking' their life destroying illness because after all there is really no such thing as chronic Lyme disease. It's just a nuisance condition after all. No big deal.

This neurological, post-sepsis, OspA driven, immunosuppressive, B-cell AIDS, which opens the floodgates to a life of opportunistic infections and retroviruses, cofactors and coinfections is really nothing to worry about.

If only celebrities would put a lid on it, we could all just go back to living our healthy, regular, worry-free lives and stop fretting.

Now, wouldn't that be the greatest Hollywood fantasy of all time.

You considered the interview “one-sided and filled with propaganda.” You believe that there should be balance provided by others with more knowledge of the disease because those who have lived with the illness, “know far more about the truth of Lyme Disease than we will ever hear from any infectious disease doctor.”

We have been fighting this battle for more than 40 years — many on the front lines of Lyme advocacy have been at it for decades. Some of us are newer to this never-ending battle. A battle we fight daily just to have this illness recognized and treated by mainstream medicine. A battle that has cost many their lives. As the cases of Lyme disease continue to proliferate both here and in 80 countries around the globe, this is and will continue to be a pandemic that we should all be very concerned about. For those who have not yet been affected by Lyme, it’s simply a matter of time.

You see, Dr. Saxinger’s premise that our concern is outsized relative to the number of cases is dead wrong. Her statement roused my ire - along with that of my fellow advocates - because it mirrors the decades-long propaganda disseminated by the medical powers-that-be -- including the CDC, the Infectious Diseases Society of America and the AMMI in Canada - who continue to insist that Lyme disease is ‘DIFFICULT TO CATCH, EASY TO DIAGNOSE AND EASY TO TREAT. Nothing could be further from the truth.

MANAGEMENT RESPONSE

The senior director for journalism programming at CBC Calgary replied to your concerns. She told you that the impetus behind the interview was growing concern about the spread of Lyme disease in Alberta. The peg was the fact that two celebrities had talked publicly about having the disease. She noted that in the introduction to the piece the programme co-host, David Gray, mentioned that there is controversy around the diagnosis and treatment of Lyme disease. He also stated that Dr. Saxinger thought celebrity attention in this case might not be in the best interest of the public because the attention paid to it is “out of proportion to the actual state of Lyme disease in Canada.”

She did not say that there is “unnecessary concern” about Lyme disease. What she did say is that worry about contracting it may be "out of proportion” to the actual risk of contracting it. Compared to the hotspots in a few parts of southern Ontario and Quebec, Lyme disease is still relatively uncommon in most of the country.

She explained that Dr. Saxinger did not use the phrase “unnecessary concern” in the course of the interview. The phrase was used in the description of the interview on the CBC website. It stated: “Dr. Lynora Saxinger, an infectious disease expert at the University of Alberta, explains why she believes celebrity stories about Lyme disease are fuelling unnecessary concern over the disease”. It has since been changed to clear up the ambiguity to “... explains why she believes celebrity stories about Lyme disease are fuelling concern ‘out of proportion’ to the risk of contracting the disease.”

The phrase was not intended to refer to the severity of Lyme disease, or the profound impact in has on those with the illness, but to the potential fears members of the public may have as to the magnitude of risk they face of contracting the illness.

She added that the interview did touch on some of the issues you raised: the reliability of testing, misdiagnosis and treatment. It is also not the only coverage of the illness, and that other stories have been recently published, including three this summer that addressed issues of misdiagnosis, long-term effects and challenges to the government’s policy on the disease.

REVIEW

CBC journalists are obliged to provide balance on matters of public interest over a reasonable period of time. They are also obliged to use their “professional knowledge based on facts and expertise”, as the CBC’s Journalistic Standards and Practices phrases it.

The interview was with a recognized expert in her field. I acknowledge you think “chronic Lyme sufferers know far more about the truth of Lyme disease than we will ever hear from any Infection Disease doctor.” The framing of this interview was an attempt to put into perspective the threat posed by Lyme disease to Canadians. While epidemiologists do believe it is underreported, there is no evidence-based analysis that shows it is ubiquitous. In fact, as the doctor pointed out - and is borne out in the literature - there is little Lyme disease in Alberta; the tick vector is not present there. The co-host, David Gray, acknowledged that there is some controversy around the matter. Dr. Saxinger was providing context, based on her knowledge and expertise:

DAVID GRAY

A number of celebrities of late, including Shania Twain and Avril Lavigne, have gone public about their battle with Lyme disease. Now, the disease is caused by a tick bite, it can make you feel tired, feverish. There’s been a growing controversy surrounding Lyme disease, but some people say the doctors are refusing to treat it. My next guest says these celebrity stories, frankly aren’t helping.

Dr. Lynora Saxinger is an infectious disease expert at the University of Alberta, and she joins us on the line. Good morning …

DR. LYNORA SAXINGER

Good morning …

DG

What’s wrong with Shania Twain or Avril Lavigne saying they have Lyme disease?

LS

I guess there’s nothing wrong with people saying they have anything in a public domain and I actually don’t know what their medical case is, but I guess a lot of physicians are concerned that there’s concern for Lyme disease that is out of proportion to the actual state of Lyme disease in Canada and so that people are getting needlessly afraid, when, in fact, you can just take a very sensible approachable to risk at the moment.

DG

Explain that to me – what is the sensible approach to risk?

LS

Well … we … there’s a lot of controversy and a lot of information available on the internet, and I think that it’s becoming kind of common currency that people believe that Lyme disease is very common and they believe that it can cause very prolonged illnesses and they don’t really necessarily have a lot of trust in our system to help them sort it out, and I think that there’s a number of problems with kind of each one of those steps, honestly, so the issues kind of go to - is there a lot of Lyme disease in Alberta – if you have Lyme disease how do you find it – if you do have Lyme disease, is it going to be able to be treated properly, and so I think that there’s some viewpoints that we haven’t been really good at sharing with people about the actual state of affairs, actually.

The interviewer does ask why so many feel they have not been properly treated or diagnosed. Dr. Saxinger provided fact-based responses. You have rejected it, but the overwhelming consensus in Canada, the United States and many parts of Europe is that the protocols for treatment and identification of this disease hold up to numerous studies. That is not to dismiss your suffering, or suffering of family members. The Centres for Disease Control website puts it this way. The medical profession refers to “post-treatment Lyme disease syndrome”:

If you have been treated for Lyme disease and still feel unwell, see your doctor to discuss how to relieve your suffering. Your doctor may want to treat you in ways similar to patients who have fibromyalgia or chronic fatigue syndrome. This does not mean that your doctor is dismissing your pain or saying that you have these conditions. It simply means that the doctor is trying to help you cope with your symptoms using the best tools available.

CBC journalists are not obliged to provide equivalence - not every view has the same weight, and to treat it as if all views were equal is a disservice to the public. Having said that, I note that Ms. Henderson sent you links to several articles as well as an edition of The Current that dealt with challenges in the treatment of Lyme disease, including the voices of patients who had difficulty getting a diagnosis and treatment. As the tick continues to spread and more research is done, CBC News will be obliged to continue reporting and seeking a range of appropriate voices. The JSP puts it this way:

On issues of controversy, we ensure that divergent views are reflected respectfully, taking into account their relevance to the debate and how widely held these views are. We also ensure that they are represented over a reasonable period of time.

There was no violation of CBC policy in this broadcast.

Sincerely,

Esther Enkin
CBC Ombudsman