Tag Archives: media

Reactions to W5 Lyme show

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Can’t say that it was easy. I’ve never been much of one for television exposure, especially now that I look like a beanstalk! Since I have been bedridden for 3 years now, I haven’t been able to stand in front of a full-length mirror and take it all in. Given how I looked on W5, I can’t say that I have been missing very much 😉

To be honest, I have mixed feelings about the show. I am sure that part of my reaction is coloured by the strong emotions which welled up in me as the full reality of my condition broke through the protective wall that I had gradually built up in order to cope with the disappointments, treatment failures, lack of a supervising lyme-literate doctor, and the slow progress with alternative methods.

Following is a slightly modified version of an email I sent to CTV to provide feedback on the show.

To CTV — Thank you for shedding some light on my case of lyme disease. Multiply my case times 10,000 and one probably gets the number of Canadians infected anew each year. The problem with lyme disease is that once one gets ill, one spends all of the time and energy scrambling to find a doctor, a cause, a positive test, a treatment, a cure, not to mention the need for cash to finance all of these “non-sanctioned” endeavours. Any “extra” time and energy is spent fighting doctors, insurance companies, public health policies, governments. There is nothing left over for mounting a P.R. campaign. The result is that myriads of people with lyme disease are too sick to properly advocate for themselves and publicize the risk far and wide. This coupled with extremely weak public health and medical prevention, recognition and treatment, means that Canadians are ripe for the picking (or biting…).

Having said all of this, CTV W5 has begun with the first step. I urge W5 (and CTV in general) to dig even deeper. There are many tens of thousands of Canadians who are experiencing a wide range of lyme symptoms. Many do not know what is going on, and their doctors are not usually much help. I got a facebook email today from a man who saw the W5 show, and searched for me on facebook. He sent a desperate plea for help. He heard his symptoms described during the show. So far, no one has been able to identify what is wrong with him, nor help him. Although I didn’t mention it during the interviews with Paula Todd, there are others in my extended family who are ill with lyme disease… And many other friends, acquaintances and friends of friends are waging the same war. We don’t show up in the statistics and we feel powerless to advocate for ourselves – every attempt to do so is blocked by political indifference, medical indifference, media confusion about an extremely complex and multi-system illness, etc…

So… digging deeper would mean news shows on specific topics such as

  1. Testing (why have they abandoned our two-tier testing regimen in Europe where lyme is generally dealt with swiftly and competently? what is the true evidence for and against the two-tier system? how would the statistics be affected if we moved to a more enlightened and honest test for lyme disease?)
  2. PHAC (public health agency of Canada) and their role in lyme policies across the nation
  3. How provincial health ministries are dropping the ball and what needs to be done to pick it up and run with it.
  4. More stories from Canadians. Some are as sick as I am (or worse), but MANY look OK on the outside, but are barely functional and often not able to work.
  5. Doctors – afraid to diagnose, treat, even mention lyme disease to a patient. And some get extremely angry when lyme is mentioned, as if the greatest medical quackery that has ever existed is being proposed by the patient.
  6. Colleges of Physicians and Surgeons – they are enforcing an orthodoxy that doesn’t make sense, that has been proven wrong, that is harming Canadians, and results in the few doctors who do try to help being persecuted, harassed and even facing suspension and license removal.
  7. Insurance Companies. Right now there is an open season on Canadians with lyme disease. Insurance companies use the uncertainties and controversies (as well as Canada’s adoption of IDSA-style guidelines which do not recognize chronic lyme disease) to deny claims to continue with life insurance, get necessary medical equipment through extended health policies, deny claims for Long Term Disability, etc…). I myself am having significant trouble getting a hospital bed (I have been bedridden for over 3 years), my life insurer tried to terminate my life insurance policy due to my lyme diagnosis and long term disability status, and my LTD insurer tried to paint me as a psychiatric case to force me back to work even when I was clearly unable to.
  8. Tick surveillance – Canada generally has passive surveillance for lyme-infected ticks. There is no PROACTIVE scientific method for identifying densities of lyme-infected tick populations. As a result, public health agencies and health ministries have only a general idea where the risks are currently highest. And what about other disease-carrying vectors? Current research is indicating that ticks may not be the only carrier of lyme borrelia and other major co-infections.
  9. ?

There is so much more here. Thank you so much for a good beginning. CTV…Please don’t stop there.

Lyme Disease on CTV W5 takes flight!

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If you are interested in capturing a glimpse into our lives, CTV W5 has put together an investigative news piece about lyme disease in Canada. Hopefully the Leggett family part of the production will not be too embarrassing…

Dates & Times: Sat. Nov. 14th, 7:00 p.m. — repeated Sun. Nov. 15th, 12 noon (times are EST)

The CTV W5 web site will feature the show, in case you missed it or want to see it again. Once it has been posted, please consider leaving a comment at the bottom of the Lyme show page – I think there will be a link to email W5 directly about the show. The more comments received, the more likely CTV will do other news features or even followup W5 shows on the effects of lyme disease on Canadians like ourselves. Thank you all for your support. With continued effort, more resources will be marshaled against the scourge that is lyme disease. There is hope.

CTV W5 will have to wait …

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Initial estimates from CTV were a bit optimistic! October 31st will NOT happen. The W5 Lyme Disease investigation (featuring “yours truly”, Kristine, Catherine and Erin) proved to be more of a complex challenge than anticipated. The producer says we are looking at a likely time frame around early January. It will be a full half hour, and aims to blow the lid off of Canadian inaction on the escalating epidemic of lyme disease. You could be next, so be watchful, learn whatever you can about it, and ask our doctors and governments to treat it seriously. Above all, keep well 🙂

Lyme Disease on Global & CTV

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I have been afflicted with Lyme Disease for over 5 years. Getting the word out about the dangers of lyme is difficult at the best of times. It is therefore with a glad heart that October is turning out to be the month that the Ontario and national media are finally beginning to dig deeper into claims that lyme disease is affecting many Canadians and that the medical system is ill-equipped to diagnose and accurately test for it.

In a nutshell:

  • Global – Sunday, October 11, 2009 @6:30 p.m. ET and again @11:30 p.m. ET. The Lyme Action Group has been instrumental in setting up and will be taking part in this “16:9 The Bigger Picture” in-depth nationwide piece on lyme disease and its dangers for Canadians. The day after the broadcast, the story will be available online on the Global site. Right after the live show, Global will be hosting a live blog event for viewers to interact with reporters, producers and guests. This blog event will go live immediately after the program.
  • CTV – end of October. W-Five (date and time still to be confirmed). Paula Todd and the CTV crew came over to our place this past week for about 4 hours, following a number of contacts with the producer over the course of the previous 3 weeks. As well as our involvement, there are a number of other parts to this investigative news piece. More details to follow…

Hopefully this is just the beginning. Quick news pieces don’t do that much to raise awareness of such a complex illness. BUT, investigative news pieces which require a lot of in-depth research on the part of producers and news anchors are just what is needed to convince people that the threat is real and has so far been under-reported and over-simplified.

“Under Our Skin” in New York City theatres

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The New York Times review of the Lyme disease documentary “Under Our Skin” isn’t too bad, considering the huge controversy that Lyme disease has become as doctors, insurance companies, lobbyists and those suffering with the disease all jockey for position. The review begins by describing the documentary as “inflammatory.” Well….. I guess in some ways it is, but as a victim myself, I see it more as a cry for help. Lyme disease is so complex and debilitating that there are essentially two types of people. Victims and their close family and friends, and… everyone else. The first group get it. When I first saw the lengthy preview for “Under Our Skin” everything made perfect sense. I could see myself in their place, and understood every feeling and frustration and roadblock that the victims portrayed in the film experienced.

It appears to me that the reviewer, Stephen Holden, although well-intentioned, doesn’t really get it. To be honest, the “media” doesn’t usually, and when they do, they don’t often stick their necks out. The Infectious Diseases Society of America (IDSA) puts a very high premium on tight-lipped orthodoxy, and maintains it with periodic edicts and journal articles, especially when the heat is turned up. Any changes in practice that would provide more support to victims of Lyme disease and increase the likelihood of early diagnosis and appropriate treatment would compromise the positions of many in their ranks who have conflicts of interest – see Connecticut Attorney General’s Office 2008 Press Release – or who may not like to admit that they could well have always been wrong (professional “ego” ??). Getting back to my point, Stephen Holden’s review is a well-written summary that doesn’t really take sides, in the spirit of objective journalism, I guess. I am not so sure that it will make the public flock to see it, though. Most media personnel (and the general public) just cannot fathom that so many people could be at risk of a mysterious disease that masquerades as so many other medical conditions, is difficult to detect, and is virtually impossible to successfully treat. If I didn’t live it every day, I would be perplexed by the “medical mysteries” portrayed in the film, and might well stay away from such a film that doesn’t appear to have anything to do with me, and is essentially a “downer,” even if it has won numerous international awards. In short, disease is depressing.

So, what is the answer? Personally, I think that everyone should see this documentary. Lyme disease is an ever-increasing public health threat that likely infects about 200,000 Americans and 10,000 Canadians each year (not to mention tens of thousands across Europe, etc….). Official numbers (especially in Canada) reflect poor diagnostic knowledge and criteria, testing practices that haven’t been deemed reliable for years, the lack of medical and political will, and willful blindness that something so grave could be wreaking havoc right under our noses. So the answer lies in reaching the critical tipping point. Reviews in the New York Times are a great beginning. So, too, is the appearance of the film in New York theatres. Whether or not it is a passing fancy or grabs people will be determined in part by followup coverage, by word-of-mouth, and by the advocacy of a small but growing “lyme-aware” group of victims, along with their families and friends.

Let’s reach that tipping point.