Wednesday, July 13, 2011

19 Chicago Tribune's Dubious Writer Is At It Again...

For those who were not here when this blog started,  a reminder:

This blog began because I wrote commentary in response to last December's Chicago Tribune article, "Chronic Lyme: a dubious diagnosis". I was not pleased with how the topic of Lyme disease was discussed in that article because it focused on doctors' disciplinary records and self-reported charlatans working in alternative medicine - and did not focus on science and clinical microbiology.

The best of my efforts to deconstruct that article is here:
http://campother.blogspot.com/2010/12/chicago-tribune-chronic-lyme-dubious.html

Now, several months later, there is an article in the Chicago Tribune by one of the same authors of the original "Chronic Lyme" article - this time on one specific doctor who has a number of lawsuits and charges on his record.

This was posted early this morning:
http://www.chicagotribune.com/health/ct-met-illinois-lyme-doctor-20110713,0,3542528.story

Well Trine, you've done it again.

My issue with Trine Tsouderos' writing is that it is always written in such a way that the content emphasizes the most controversial topics that could possibly be related to chronic Lyme disease without actually discussing chronic Lyme disease itself.

It's sensationalism, and it is about getting the audience's outrage in print. It's an open invitation for the general public (who is fed up with mainstream medicine and bad doctors, and often rightly so) and skeptics (who do not think Lyme disease can be a persistent infection) to comment on how horrible Lyme literate doctors must be in general if someone specializing in the treatment of chronic Lyme disease has a background such as Dr. Piccirillo's.

Tsouderos' article written last December also focused on two doctors with disciplinary actions on their records. Never once did Trine mention that there are many doctors - both ILADS and non-ILADS doctors - who treat Lyme disease patients with longer than standard courses of antibiotics and help people get their lives back. These doctors have many years of experience treating patients and do not have the kind of disciplinary record which is on display here.

I have a major issue with Tsouderos' previous and current writing on chronic Lyme disease because it does not mention this nor does it mention any of the science and research behind Lyme disease and persistent symptoms.

As an investigative reporter, she could be putting her skills to use and advance science education for the general public if she wrote about research which demonstrates that Borrelia burgdorferi spirochetes can persist after antibiotic treatment and pointed out that researchers are not 100% certain of their significance. They argue over it, just as the IDSA and ILADS argue over it. It would also be beneficial if she mentioned the IDSA's position on supporting an autoimmune response and the molecular mimicry hypothesis as the cause for post-treatment Lyme disease symptoms - but she has never even gotten this far to explain why any researchers support a non-infectious model for persisting symptoms.

Reporting on these aspects of post treatment Lyme disease or what has been called chronic Lyme disease is what fair and balanced reporting would entail. Instead, what we get is pure and unmasked sensationalism geared to getting the most rise out of the audience.

All Trine seems to do is repeatedly point out a litany of bad medical decisions or charges related to a handful of doctors - and in the case of December's Chicago Tribune article - at least for one of those doctors, the charges were dropped.

There is no mention of the Lyme disease patient community's position that doctors who treat Lyme disease with more than the IDSA Lyme disease panel's guidelines recommended amount and duration of antibiotics are subject to being reported by insurance companies solely for that purpose. Nor is there mention of what evidence there is to support the patient community's statements on these reports. Instead, there is no mention of this at all - whether Trine thinks these reports are genuine or not.

Now, with what follows, I am probably going to receive some hate mail because of what I am about to say, but so be it. (I will create a special tab, "Hate mail" at the top of this page just for that purpose. If anyone writes in support of what I say, you too will get your comments on a separate page, "Love letters", or something like that.)

But anyway, I have to call it as I see it:

I have issues with Dr. Piccirillo's decision.

If Dr. Piccirillo was inspired to become an LLMD because he himself contracted Lyme disease and suffered due to it, I admire his desire to help others who have suffered a similar fate. But at the same time, was he hoping that his record would go unnoticed and he could start anew?

Dr. Piccirillo, you realize that doesn't happen when you enter the deep end of the pool in the Lyme disease controversy, don't you? Everyone and everything is scrutinized. To go into one of the most controversial jobs with a number of marks already on one's record adds to the existing public misconceptions and generalizations that are held about LLMDs.

Your decision to make this career move affects patients and reflects on everyone working in the field. If you were in fact by your own admission not the best surgeon and your record reflects charges of incompetence - then was picking a potentially high profile, high demand job such as an LLMD the way to go?

I appreciate your stated desire to do better and your own acknowledgment that you weren't cut out to be a surgeon. I take that with sincerity and at face value. And I understand that it's not your fault that Tsouderos wrote about you this way - through no fault of your own, your story and your past has been dragged out before the public for all to see.

Unfortunately, your past is exactly what they wanted to put on display and what many people would want to know about if you were to become their own doctor. As someone who has the lives of other people in your hands, you are going to be held accountable for what you do and do not do. It follows you; that's how it is.

But to be quite pointed about it, had you been the best doctor in the world and helped many people and harmed none - would Tsouderos have written about your work? Probably not. In terms of Lyme disease reporting, so far Tsouderos is a one trick pony.

Everyone who has read this kind of article realizes that this isn't fair and this isn't balanced reporting. How do you change this situation?

If you want to see balance in the kind of press doctors have been getting, then the media has to provide more coverage for and emphasize doctors who are mainstream, take insurance or charge reasonable fees (e.g. Dr. Cathryn Harbor), are willing to treat patients longer term with antibiotics based on case studies and research, and monitor and care for patients diligently.

We need more experienced doctors to come forward and publish their case studies and conduct new research on longer term antibiotics and other treatments. We need to have the best doctors work on our problems from the beginning and give them more positive exposure, not less. Otherwise, the only kind of story people hear will be the syndicated one which is presented to them across the country in sound bites by Tsouderos and others.

As patients we have our own job to do: Those of us whose symptoms have improved from treatment should be informing people of the positive aspects of treatment and how it has improved our quality of life - and how it has helped many of us return to work and the active lives we had before getting bitten by ticks.

Emphasize the positive. Let people know how treatment has helped you and write and talk about the importance of more research and clinical trials on different treatments for post-treatment Lyme disease. Get the word out there and blog about it, and ask your doctor to work with others and publish research.

This controversy seems never ending and I want it to stop, but things won't change unless what we're doing changes.

19 comments:

  1. So I left 3 comments at the Chicago Tribune for Trine and others to read. I don't know if I will get a response.

    Right now I would rather read what Steve Novella has to write because at least his writings which are against chronic Lyme are more intelligent, well-written pieces (and so are a number of those who leave comments) - even if I don't agree with everything he says.

    (Warning: You aren't likely to agree either, and may be angry with what he writes - but at least he does so on a higher level than Tsouderos, who is compelled to avoid tackling the chronic Lyme issue head on and write sensationalism instead.)

    Hell, even this series of rapid responses is better, and it involves doctors who treat chronic Lyme, patients, scientists, and members plus the president of the IDSA:
    http://jme.bmj.com/content/35/5/283/reply#medethics_el_2422

    Will we ever see the discussion about chronic Lyme disease on this level in a national newspaper? Or is the Chicago Tribune intent on dumbing this down?

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  2. CO,

    Thanks for writing this. I read the Chicago Tribune article with dismay and my first thought was "Here we go again!". Trine Tsouderos makes no bones about aligning herself with those who feel it is their responsibility to mock Lyme disease patients and anyone foolish enough to treat them. Her associations with those people have become rather clear to me since her December 2010 article, but those details are a topic for another comment at a later date (and more likely never).

    I couldn't agree more that we, as Lyme disease patients -- whether present or past -- have a responsibility to educate our doctors whenever possible (and it isn't always) and to get the message out that most people who eventually receive adequate treatment do in fact recover their health either completely or at least to a large extent.

    People on Lyme disease forums tend to post about their difficulties and challenges rather than the more positive aspects of responding to treatment. At the risk of tooting my own horn, one of my posts on a forum months ago was a request that "veterans" share their experiences for the sake of newcomers who found it difficult to even imagine any type of light at the end of the tunnel. My motivation was largely personal as I was having a difficult time maintaining hope in the face of an unfortunate situation (because my ID specialist was no longer treating LD patients and my recovery was not yet complete).

    There are people doing amazing work to raise awareness about Lyme disease in North America in various ways, and I salute them all. I sometimes wish it were a more coordinated effort rather than a growing number of local Lyme disease support groups trying to essentially reinvent a wheel that no longer seems to fit.

    We all need to roll up sleeves and contribute in any way(s) we can to the solution of finding scientific and humane ways of dealing with those who have Lyme disease. People like Trine Tsouderos just make it harder for everyone by writing ridiculous articles that are the equivalent of pouring gasoline on a raging fire.

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  3. Rita,

    I'm tired of articles like Tsouderos' because it basically appears for all intents and purposes to be there to fan the controversy rather than address the underlying issues that really affect patients and treatment.

    Trine seems to have a penchant for putting doctors with disciplinary counts against them on display as an example of why treating Lyme with long term antibiotics is wrong. It is a flawed argument and made obvious when you replace "LLMD" with "oncologist" and Lyme with "cancer". As in, would anyone question a patient's cancer treatment if an oncologist who is treating them had harmed other patients in the past out of incompetence? No. I think everyone would would say "Well, get that doctor out of there, and have someone else continue to treat the patient for cancer".

    You can do the same substitution with AIDS, tuberculosis, or even depression. The argument is flawed, just the same.

    People need to know the treatments have given patients their lives back, to whatever degree it has. And we need more research and publicity aimed towards getting support for more research - rather than publicity like what Tsouderos is writing.

    I'm tired of this. They really need to raise the bar on discussing Lyme disease online in these newspapers and other fora.

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  4. Okay, Rita, sorry I had to vent for a moment and did not really respond to the content in your comment.

    Re other doctors: I agree they need to be educated, and to a certain degree doctors need to be informed that we are being treated for Lyme disease and coinfections - but is it the patients' job to educate them or is this something that the state health department should ensure so that all doctors are aware of the symptoms of early Lyme disease so as to prevent long term symptoms and complications? I think that as patients we can do some educating and promote awareness for the public - but I really think that some official health board/ministry has to commit to educating doctors directly and test their applied knowledge.

    Re Lyme fora: I agree, people do tend to post their difficulties and challenges rather than their successes, and I'd like to see that shift a bit. Not that people should stop sharing their setbacks - but those who go on to do well would serve everyone well to tell us they've improved, fully recovered, and gotten on with their lives. I'd like to see more case studies written up and published by LLMDs about such patients, also, and if they can get any external validation for this such as observations from the patients' family physicians and specialists, that would give more weight to the individual patient's case.

    You wrote, " I sometimes wish it were a more coordinated effort rather than a growing number of local Lyme disease support groups trying to essentially reinvent a wheel that no longer seems to fit." I hate to say this, but "growing" doesn't even begin to cover it? It's been a teeming mass and tangle of many different organizations and groups for some time, all with their own personalities and politics. When I was new, I thought everyone was more "all for one, and one for all" and had a sense we were all in this together. Now I can see that it isn't quite like that, and different groups have somewhat differing goals and don't always work together. I wish they would, though. I wish they would all band together - and even more so, band together with patients and advocacy groups for other similar conditions such as ME/CFS and Fibromyalgia to petition for research from independent researchers in the US and abroad.

    In the meantime, we all keep plugging along the best we can with the treatments we have. But I think we need more answers and on a scientific basis find a way to categorize ourselves - because one of the biggest difficulties in designing trials for patients with persisting symptoms is that we are a heterogenous group. Either we find homogenous subgroups to test, or we have to be innovative and find new ways to test heterogenous groups based on specific markers.

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  5. Hi I understand what you are saying but there are many many people who work hard and harder to get our media to publish balanced articles- in vain. Just occasionally we get the odd one in our UK media and one or two more readers come by their possible diagnosis, but really the media are just not interested. If only they really knew the enormity of so many sick people who do actually get their lives back on adequate antibiotics. One day they will but how many more will suffer meanwhile.
    So don't be too hard on your fellow sufferers many of them have done what they can but their efforts fall on deaf ears and when the likes of Trine are the ears there isn't much hope.
    I started my blog out of shear frustration with the media with the help of Google alerts I have had quite a number of contacts from people who may otherwise never have suspected Lyme so even without the newspapers help we are making a difference.

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  6. Joanne,

    I know people are trying and the old media axiom is, "If it bleeds, it leads" often applies. So newspapers aren't going to jump on posting about a painful, chronic disease - but they will publish about instant death and mayhem. Also, if it involves sex and celebrities, it is bound to hit the sidebar at the very least. Lyme disease isn't sexy and it's slow to kill. No front page news there. But it should at least occasionally be, as it is the fastest growing vector based disease, and Babesia also should be, as it is contaminating our blood banks.

    The newspapers (online and in print) may not be passing on the Lyme patient community's message as much as we'd like, but we still have to keep trying to get that message out there and do so in a straightforward and articulate manner.

    My comments are here to encourage more independent reporting by doctors, patients, and researchers and not just to condemn Tsouderos reporting style and focus. We all have the ability to speak up and report about our research and experience directly and provide exposure to those unfamiliar with the issues of diagnosis, treatment, and living with Lyme disease and coinfections. And as long as there is freedom of speech and freedom of the press, and one is well enough to get the message out there - please do.

    I'm not trying to be hard on anyone for trying. I am saying I'm fed up with seeing items like Trine's hit one paper and be syndicated to many the same day. Trine's article is also in the LA Times and many other newspapers, each with their own readership and comment boards. One can never respond to them all.

    But if a lot of us - all the Lyme patients out there - were to have our reports and the same high quality research on many sites across the internet? We could have our own form of syndication. And then publish links to our material online to different fora, Facebook, and via email. Fora and email, by the way, which is not Lyme-related so the people who are not in the same boat are made aware of the issues.

    Your comment highlights my desire for our own form of syndication - which to some degree is already happening. Your contacts from people who may never otherwise have suspected Lyme means what you are doing is making a big difference. Now, how can we make an even bigger one than we are now? This is what I'm trying to discover.

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  7. CO,

    I'm glad you vented. My comment probably didn't reflect the level of frustration I was experiencing when I wrote it. In fact, I very nearly wrote something similar when it comes to substituting any type of specialist who clearly should not be permitted to practice medicine. The example I had in mind had to do with a cardiac surgeon who is fond of implanting stents when they aren't required ... but I'm getting off topic here.

    Perhaps I'm being overly optimistic, but I believe it is possible for the many extremely intelligent people in the world who have experienced Lyme disease to eventually speak with a unified voice. The internet has made that a possibility and you already have an international following which will grow with time. I think many of us look to you for inspiration and hope because you are the voice of reason Lyme disease patients respect and trust. I prefer the term "facilitator" to "leader", but I do believe you are providing a leadership role (although I doubt very much that was your intended purpose when you started this blog).

    There is next to no information being taught to medical students in Canada these days, and that issue has been raised time and again for years by the directors of the Canadian Lyme Disease Foundation at a federal level. I'm sure equivalent efforts have been made by those in the U.S. and other countries, but finding information about this is difficult for a lay person.

    The sharing/exchanging of information via forums, blogs and the media needs to continue and even increase if at all possible, and I think most people whose lives have been impacted by Lyme disease can understand the benefit of doing so. We are up against media outlets that are now largely owned by private companies that tend to be conservative and therefore supportive and trusting of the FDA, CDC, IDSA, etc.

    Joanne,

    Even though I wrote "North America" when referring to the many people who are doing amazing work to raise awareness about Lyme disease, I fully intended to add "and other parts of the world" because I specifically had you in mind when I was writing that sentence.

    I have personally experienced the situation where media outlets have no interest whatsoever in covering Lyme disease. This was especially frustrating for me when I spent lots of time and energy doing my best to support the efforts of two individuals in Ontario who made personal sacrifices to raise awareness about Lyme disease. Our governments aren't doing a good enough job of educating the public when a member of a regional council in southern Ontario has never even heard of Lyme disease.

    Okay, this probably already too long to post.

    My best wishes to all who give of themselves to make this world a better place for everyone, and especially those with Lyme disease.

    Rita A

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  8. Maybe this doctor deserves to be bashed, but you are right, she is using him to once again bash the concept of Chronic Lyme.

    John S

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  9. John S,

    I think that as much as patients need another doctor who is trained in the clinical diagnosis and treatment of Lyme disease and other tickborne infections - that Dr. Piccirillo is not my first choice for a doctor I'd want to treat me, knowing his past record pre-LLMD.

    I'd want someone more like Patch Adams or something - someone with excellent bedside manner and a spotless record where no one could even imagine filing a malpractice suit.

    If I think back to how I'd select a doctor for anything before I got so sick with Lyme disease, I would get a referral from a friend for someone who knows their stuff and treats their patients with respect. If anyone had told me the doctor had multiple malpractice suits and the state deemed he was incompetent, I would stay away.

    Some people seem to move their benchmark for a doctor once they get persisting symptoms of Lyme disease and coinfections - and I don't understand why other than their fear there won't be anyone else. But there is - there are plenty of other LLMDs out there.

    If anything, I have been more particular because this is a difficult condition to manage - as would late stage Lyme or HIV. I would want a specialist in either case and someone with lots of experience and compassion.

    I think that holding doctors to high standards is a perfectly reasonable thing to do in any case; this is your life you're talking about. And if one doctor isn't working for you or meeting your standards, then seek out another one. Vote with your feet, but get a copy of your records and leave constructive feedback behind so the doctor knows why you need to switch.

    All this aside: Yes, Trine is using a doctor with a disciplinary record yet again to try to make a dramatic statement about chronic Lyme disease and how it's treated. And it's so obvious and sloppily executed that I think everyone reading it can see right through it.

    Last I checked there were only 34 comments on this article compared to the ton (over 200? 300? Can't recall now.) that their "dubious diagnosis" article received last December. It's kinda sad.

    In the meantime, I think everyone else could be doing research and writing their own blogs to ask the hard questions about chronic Lyme and cite what research is out there already.

    John S, I recall you took an interest in persister cells? I haven't forgotten this, by the way - I have been rereading the article you mentioned. But I'm wondering: Would you be willing to look deeper into the issue and blog about it yourself, since you think it is a strong possibility for why Lyme disease might persist? If you're not, and you're too sick to do so, I understand...but maybe your understanding of this issue could help others with their own research.

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  10. CO,

    As usual, I can't recall exactly how I ended up reading this article published by the International Journal of Antimicrobial Agents (which I came across for the first time), but it does underscore the importance of responsibile reporting by journalists -- and especially when it comes to matters of health:

    http://www.ijaaonline.com/article/S0924-8579(10)00269-4/fulltext

    Emerging zoonoses: responsible communication with the media—lessons learned and future perspectives

    published online 23 August 2010

    Quote:

    The scientific literature presents information in a much less certain way than the lay press. Scientists use lots of qualification, especially for preliminary findings, and they point out the weaknesses of the study design or methods. This does not often happen in articles that appear in newspapers or magazines, for understandable reasons. Nevertheless, journalists who write about science can be the friends as well as the foes of scientists. A good journalist can be very helpful in communicating science to the public in a clear, unambiguous way, but it only takes one poor one to cause a lot of confusion and misunderstanding.

    (end quote)

    How very true!

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  11. CO,

    You wrote:

    When I was new, I thought everyone was more "all for one, and one for all" and had a sense we were all in this together. Now I can see that it isn't quite like that, and different groups have somewhat differing goals and don't always work together. I wish they would, though. I wish they would all band together - and even more so, band together with patients and advocacy groups for other similar conditions such as ME/CFS and Fibromyalgia to petition for research from independent researchers in the US and abroad.

    (end quote)

    I found some interesting stuff about low-dose Naltrexone tonight and wanted to share it with you before I forget. It has been used in the treatment of CFS/ME, fibromyalgia and even Lyme disease. The fact that Stanford is studying its use in the treatment of fibromyalgia gives it some legitimacy (at least to me):

    http://snapl.stanford.edu/ldn/

    http://cfspatientadvocate.blogspot.com/2010/11/maija-haavisto.html (LDN helps with CFS/ME)

    http://www.fiikus.net/?ldn (Maija Haavisto's blog)

    http://www.scribd.com/doc/42236118/The-Promise-Of-Low-Dose-Naltrexone-Therapy-ISBN-0786437154

    There really are a lot of similarities between CFS/ME, fibromyalgia, post-treatment Lyme disease and much more. I need to get back to gathering stats on the incidence of Lyme disease in Canada before I dive too much deeper into possible common denominators.

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  12. John S,

    Another thing occurred to me, while living with Lyme disease and my difficulty in obtaining treatment even with a huge EM rash and a tick in a vial...

    I think some patients are so sick and so relieved to find someone who will treat them for Lyme disease, that some will overlook whatever that doctor may have done in the past. And they may not even know.

    And there is the issue of trying to ascertain if the reason why they have any past disciplinary charges is solely because they prescribed longer courses of antibiotics to treat Lyme disease and someone else reported them for it.

    If that is all they are being charged for, the Lyme patient community finds that unfair and rightly so; guidelines are meant to be guidelines not regulations.

    The use of additional courses of antibiotics, from all I've read, should be based on objective clinical evidence and response to treatment - something the doctor can determine on a patient-by-patient basis. (Plus, if one has good serology, one can map serological progression to infection due to which antigens present themselves over time.)

    But I digress.

    It's important to be able to make a distinction between charges based on exceeding the standard of care and charges which are based on incompetence, negligence, and doing harm.

    As a patient, I draw the line somewhere on what I find acceptable and unacceptable in a doctor, and I think it is within reason to accept care from Lyme literate doctors who are skilled and competent whose only charges against them have been about exceeding the standard of care - and it's entirely sane and reasonable to want to avoid any that would have a clear record of incompetence, negligence, and doing harm.

    The individual has to investigate and make their own choice about what which doctor to see and check their references.

    It's a hard call sometimes within the Lyme world because of the way things are set up... Because there is a controversy and limited access to care, there is a need for people to band together to support doctors and protect their access to care.

    And people want to support the underdog, especially if they themselves have felt marginalized by Lyme disease. The patients can sympathize with the doctors because the doctors are marginalized for treating Lyme disease - and the patients have been marginalized for suspecting and having Lyme disease.

    But even though that sympathy is there, and an acknowledgment that we're in this together - it's always important to remember that we are the patients and we hire doctors. And to truly be on the same side where doctors and patients work together, there has to be trust; there has to be evidence that the doctor knows his/her stuff and upholds the edict, Do No Harm.

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  13. Rita A,

    Thanks for sharing those research links. I'll have to look more closely at the LDN links - especially the Stanford one - when I'm more awake.

    Responses to some of what you said upstream:

    "Perhaps I'm being overly optimistic, but I believe it is possible for the many extremely intelligent people in the world who have experienced Lyme disease to eventually speak with a unified voice."

    This is my hope, actually. They all need to find each other and discuss how best to address the issues which affect all of us and get some effective movement on them.

    As WIlliam Burgdorfer said in an interview, "The controversy in Lyme disease research is a shameful affair. And I say that because the whole thing is politically tainted. Money goes to people who have, for the past 30 years, produced the same thing—nothing. "

    While I don't think that is entirely true and see much value in the work of Barthold, Luft, and other American and European researchers, I think there is a lot of truth in that. How do you deal with the truth?

    What can we do to get our best minds together to produce something significant in the next five years? Because I don't know if I will even live for another 30 years. I simply don't know, nor do I know what damage that has been done to my body is permanent now.

    "The internet has made that a possibility and you already have an international following which will grow with time. I think many of us look to you for inspiration and hope because you are the voice of reason Lyme disease patients respect and trust. I prefer the term "facilitator" to "leader", but I do believe you are providing a leadership role (although I doubt very much that was your intended purpose when you started this blog)."

    You are the second person who has said something about me being in a leadership role - that's funny. Interesting. And no, I didn't intend to provide that role when I started this blog - I started this blog to rant at the Chicago Tribune last December. And then I decided to just keep writing. And so it goes.

    Being a facilitator is fine; I can live with that title... I don't know about being a leader - a leader is someone who is nominated and chosen by others, anyway, and not proclaiming it.

    (more)

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  14. For Rita A - continued:

    "There is next to no information being taught to medical students in Canada these days, and that issue has been raised time and again for years by the directors of the Canadian Lyme Disease Foundation at a federal level. I'm sure equivalent efforts have been made by those in the U.S. and other countries, but finding information about this is difficult for a lay person."

    I think it's a problem here, but my sample size is small. I noticed you're reading the blog, "My Lyme Disease Story", by 'Shadow' who is a doctor who is being treated for Lyme disease.

    In her blog, I asked her how much she was taught about Lyme disease in med school, and her response is there for you to see - but basically it was very little, and no lesson in practical application. She finished med school last year, if I recall correctly - so this is really sad to hear.

    She may be only one example, but she went to the same school with many other future and current doctors who received the same training. They need to know more when they get out the door and consider Lyme disease and other tickborne illnesses early on as differential diagnoses. If they did, then fewer people would be stuck in this Lyme disease treatment controversy later.

    "The sharing/exchanging of information via forums, blogs and the media needs to continue and even increase if at all possible, and I think most people whose lives have been impacted by Lyme disease can understand the benefit of doing so. We are up against media outlets that are now largely owned by private companies that tend to be conservative and therefore supportive and trusting of the FDA, CDC, IDSA, etc. "

    I think the sharing needs to be more directed and specific, actually.

    There is a lot of Lyme disease awareness alongside negative publicity, and personal stories about how people's lives changed and alternative treatments. This is the bulk of the Lyme disease sites which are out there.

    What is needed is more science and more hard-nosed questions about Lyme disease itself - about the different sides of the argument, about research, and in plain terms how much this illness is costing us in cold hard cash. Someone needs to accurately lay out the cost of lost employment and productivity, the cost of investments we would have otherwise made, the taxes which otherwise would have been paid, and the property we would have purchased. Add in a separate chart for the cost in other ways, too - like disability payments.

    But basically, I think there are many sites about Lyme disease which have saturated the internet with certain topics and there are not enough about these other items which I've just listed.

    The science is important because it does get people talking about not only what's wrong but can give people ideas on how to fix it. I'm hoping as time goes on, more microbiologists will at least write about the nature of spirochetal diseases (Spirochetes Unwound is a great example), more doctors with Lyme disease who are undergoing treatment will write about their experience and what is working to heal them, and more people with Lyme disease with scientific and skeptical minds will come forward to write and ask questions. Hard questions. Ones which might make certain people uncomfortable - but with the whole purpose being to find the truth and look at the issues on a higher level.

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  15. Hi Camp other Thanks for commenting on my blog.I did leave a reply there.
    Is this the sort of thing you were meaning
    http://lookingatlyme.blogspot.com/2011/06/lyme-patients-defence-group.html
    Also I just added the German Guidelines to my blog in the right hand column well worth reading and maybe you might like to share them on your blog. Our HPA is very critical of ILADS Guidelines so it is good for patients to be able to point to something from Europe that is not completely dictated to by IDSA and not dismissed by HPA.
    Here we have Eurolyme a chatline that you might find helpful, it is well respected by the Lyme World and there are several people from Canada and US who regularly post on there. You may prefer it to other chat lines you have used before as it has a different sort of format.

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  16. CO,

    The Chicago Times is doing some housekeeping:

    http://www.wbez.org/story/chicago-tribune-lays-20-employees-89540

    Quote:

    The Chicago Tribune is cutting 20 employees from its pay roll -- and many of them are from the Tribune's newsroom staff.

    The newspaper reported Thursday that the layoffs hit writers, editors and support staff. The Tribune Company declined to comment in depth on the layoffs, releasing this statement: "We constantly evaluate our resources and staffing based on our strategic goals and the business environment. We do not comment on internal personnel matters."

    ReplyDelete
  17. Rita,

    Are you posting this link because you think Trine Tsouderos will be one of the employees cut from its pay roll? I don't know how likely that is - if everyone responds to her articles, both pro and con - it's more likely she will be retained. We'll see.

    ReplyDelete
  18. The CT should get rid of Tsouderos.

    She calls herself a Science and Medical reporter and yet she has a BA in International Studies, not even a degree in the science field. (Not that anyone without a science degree can't understand science, it just takes more persistence, dedication, and using the scientific method.)

    She needs to take science classes and actually read on her own instead of parroting the IDSA or whoever is feeding her information.

    Her other articles aren't much better.

    She pretty much disgusts me, and I wonder how she got her job.

    ReplyDelete
  19. jjbluemountain,

    Your issue with Trine's reporting is the same as mine - she doesn't have a science degree or science background based on what I know, and that is reflected in her writing. I could forgive that if she took the time to truly understand the controversy and write about it from a scientific approach or angle rather than one about disciplined doctors who also happen to treat Lyme disease longer term than the average.

    I don't have so much of an issue of someone writing about the IDSA's position even if I don't agree with everything the IDSA guidelines panel has written. Just if one is going to go that route, I'd want to see supporting evidence for their position and more detailed explanations as to why they do not support ongoing infection as any part of their model now - when members of the IDSA have done research in the past which included ongoing infection as a cause for persisting symptoms.

    I'm pretty tired of the whole "we think it's an autoimmune disorder" answer when it comes to those who support a model of post-Lyme disease syndrome because those who support it fail to outline the steps they took to reach their conclusion. If they made a web site or wrote a detailed book explaining why they think so, then perhaps more people could understand their position and try to poke holes in it as well as find reasons to support it.

    Trine's article is indicative of a bigger problem, which is the dumbing down of the news and catering to the lowest common denominator in print. News as a whole could be performing a role in improving the science literacy of the public rather than writing from a perspective that capitalizes on sensationalism. Unfortunately, that doesn't sell papers.

    It is what it is because the newspapers have been hurting for money and readership, especially with so many online sources and TV channels people can turn to for news. Having to cut 20 people from the staff - whether or not Trine is among them - is indicative of the scope of that particular problem.

    ReplyDelete

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