Chicago Tribune off balance on chronic Lyme disease
This is what happens when reporters make up their minds about a controversial story before beginning to write. In a Dec. 8 Chicago Tribune piece on Lyme disease, reporters Patricia Callahan and Trine Tsouderos write that while Lyme disease is real, so-called “chronic” Lyme disease, said to last for years, “is an illness that might not even exist.”
That’s an arguable point, and a fair conclusion to come to–if the writers came to it fairly. But they follow that by saying, without attribution, that we live “in a golden age of dubious medicine,” and that “advocates can raise big money to ‘Unmask A Cure’ for a disease that already has a cure, and doctors disciplined by medical boards are held up as heroes.”
Then this:
Fueled by suspicion of doctors and drug companies, Americans are flocking to alternative healers promoting risky treatments and unproven cures. The Internet connects pseudoscientists with the desperately ill, trumpets I’ve-been-cured testimonials and often dismisses the results of clinical trials as the work of unsympathetic doctors corrupted by Big Pharma money.
Google “ALS” and “treatment” and results include a site touting deer antler therapy for amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease. Google “cancer” and “alternative treatments” and you’ll find a “grape cure,” among others. Message boards are packed with patients trading treatments, often including detailed prescription information.
It goes on. Note that none of this is attributed. The reporters are saying, in their own voice, that chronic Lyme disease belongs squarely with all kinds of risky and unproven cures for cancer and other ailments. With that kind of opening, most readers don’t have to wade any further through the reporting to know what conclusions the story is going to come to. The writers have conveyed their sneering skepticism without, so far, more than a few shreds of reporting. And none from anybody we might consider an expert on the disease.
Indeed, experts are scarce in this 3,000-word story (the count is for the web version). Callahan and Tsouderos are likely going to send me an irritated note enumerating the experts they quoted in the story, but there aren’t many of them, and none of them is quoted at length addressing the legitimacy of chronic Lyme disease.
The reporters might point out that they quoted Allen Steere, the doctor who discovered Lyme disease. But does Steere say chronic Lyme disease is a phony diagnosis being treated by pseudoscientists with unproven cures? Here’s his quote:
“I don’t think of it as a mysterious disease that causes a lot of vague symptoms,” said Steere, a professor at Harvard Medical School who has spent decades studying Lyme disease and sat on two of the expert panels. “It doesn’t.”
It’s clear that Steere doesn’t buy Lyme disease as a cause of all kinds of seemingly unrelated symptoms. But his statement is far more measured than those of the reporters. Further, this is the entire quote. I was eager for a more extended report of Steere’s views of chronic Lyme, but this is all we get. Further still, the quote does not appear until 1,000 words into the story, after we’ve already heard about a doctor repeatedly disciplined for treating chronic Lyme, and from a woman who thinks Lyme disease was manufactured in a government lab. The reporters also quote a Robert Bradford, identified only–and unhelpfully–as the founder of the Robert Bradford Research Institute, who says chronic Lyme is the plague of the 21st Century and might be responsible for half of all cases of chronic illness.
Steere’s quote is set up with a paraphrase of the findings of two doctors’ organizations who concluded that “the diagnosis is suspect.” Again, this is far more measured than what the reporters are writing in their own voice.
They then quote chronic Lyme advocates at length before introducing another expert, Dr. Paul Lantos of Duke University, whose quote, in its entirety, is: “Why take needless risks with people’s lives?”
Again and again, Callahan and Tsouderos give far more space to advocates making questionable claims than they do to experts who refute those claims, allowing the serious case for chronic Lyme disease, whatever that might be, to be buried under the dubious claims of advocates.
The reporters go on and on impuguning patients and advocates without ever telling us whether there is a debate among legitimate experts about whether Lyme disease might assume a chronic form.
The reporters bolster their case that chronic Lyme disease doesn’t exist by noting further down that Bradford was convicted more than 30 years ago for conspiring “to smuggle a banned cancer treatment.” If Bradford is a crook, why do the reporters spend so much time reporting what he has to say? Why is he even in the story?
The writers give the last word to an activist whose rebuttal to one of the doctors’ groups that was skeptical of chronic Lyme disease is this: ‘”Infecting the committee members with Lyme sounds great because we are pissed off.”
Not exactly reasoned debate, eh?
In short, what Callahan and Tsouderos have done is to argue that chronic Lyme disease can’t exist because the people who say it does are nuts.
A far better approach would have been to report the evidence, pro and con, and to quote the most persuasive advocates for and against chronic Lyme disease–not the least persuasive. And to give both sides equal time to speak.
(Thanks for the heads-up to Pam Weintraub, features editor of Discover Magazine and author of Cure Unknown: Inside the Lyme Epidemic.)
- Paul Raeburn
December 16th, 2010 at 4:38 pm
This pseudo-reporting is criminal, and Callahan and Tsouderos should be driving cabs for the simple fact that there is an intense international debate about the confirmation of chronic Lyme going on between the Infectious Disease Society of America and the International Lyme and Associated Disease Society (that has included lawsuits and a scolding of the ISDA by Connecticut’s Attorney General). Couple that with the new research coming out by Commins and Platts-Mills at U. Virginia and in Australia related to blood borne antigen transmission through tick bites, alpha gal in red meat and thousands of older people becoming deathly allergic to red meat from said bites, and with a little work you’ve got a very real story that would have the US Beef and Pork associations squiggling in their chairs. No so here. Guess here is the Trib is getting what it’s paying for.
December 16th, 2010 at 6:02 pm
Thanks for posting. The problem, as I see it, is that these journalists have conflated two issues: One issue, a look at the predators abusing patients carrying the diagnosis of chronic Lyme disease, is a worthy endeavor. The second, an examination of the debate over why symptoms persist after short-term antibiotic treatment, is also a worthy endeavor. But these issues –thought interrelated because a dearth of knowledge leaves a vacuum for predators– are not the same.
In order to examine the possible reasons for chronic symptoms after treatment for Lyme disease, one would need to quote credible, university-based scientists on the range of views and interpretations. Instead, the journalists quote scientists with one view, but when it comes to balancing that view, they attempt to do so by quoting the very criminals, predators, and crazies they are trying to expose. The implication, of course is that these sources must provide the counterweight because there ARE no credible, university-based scientists who disagree with the contention of the article, or the experts quoted. Of course, this is blatantly untrue –and one does not need to look far or even make many phone calls to find a range of views among credible academic experts with high visibility in the peer review.
Either these reporters started out with an agenda –and thus were satisfied to ignore like-weight experts with alternate views—or else they failed to realize these experts exist. In other words, either they were biased or they were incompetent.
And it is too bad –because an expose on predatory practices in this arena is sorely needed.
A final note: The issue of Lyme disease, in general, is confounded by co-infections carried by Lyme ticks, and by a range of Lyme disease strains, only recently described in the peer review. Some of our top scientists now suggest these strains may present variably in terms of symptom sets, in terms of testing –and yes, perhaps even in terms of length of treatment to kill. It is too bad that these journalists failed to attend the recent Institute of Medicine conference, Lyme Disease and Other Tick-Borne Diseases: The State of the Science, or even watch the webcast, where many of the nuances and complexities were discussed by the top experts in the world.
Pam Weintraub
Features Editor, Discover Magazine
Author, Cure Unknown: Inside the Lyme Epidemic, winner of the American Medical Writers Association award for best book, 2009
December 16th, 2010 at 8:28 pm
Trine has done a great disservice to journalism in general and the Lyme community specifically. She should return to reviewing cupcakes for the Tribune.
December 16th, 2010 at 10:35 pm
Gotta love it when someone takes you quote completely out of context.
I did write, ”Infecting the committee members with Lyme sounds great because we are pissed off.” That isn’t all I said though. When these words were originally written it was to tell people that comments like these that were flying around the internet, in the wake of the IDSA decision in April 2010, were not realistic and that actions such as egging the IDSA building and infecting panel members was not appropriate.
What I actually suggested people do was to share their Lyme story. In the wake of the article I once again asked them to do the same thing, this time with a focus on why their Lyme disease is not the IDSA Lyme disease.
Read the post that I was quoted from- http://lymenaide.wordpress.com/2010/04/23/idsa-vs-lymies/
Read my response to the Tribune article- http://lymenaide.wordpress.com/2010/12/08/my-lyme-disease-is-not-the-idsa-lyme-disease/
December 17th, 2010 at 11:22 am
I wonder if this article has anything to do with the growing tendency of blogs to serve as news sources. These writers wrote what seems like an extended blog post, after all: light on research and heavy on their own opinions. Do these reporters just lack an understanding of how to properly research and report? Is this a symptom of a larger problem with journalism standards? Just asking.
December 17th, 2010 at 2:19 pm
Larry O’Hanlon Says: “Is this a symptom of a larger problem with journalism standards? Just asking.”
For another fascinating story of the intersection between blogging and journalism, skim the extensive coverage of the arsenic-tolerant bacteria from Mono Lake.
December 17th, 2010 at 11:02 pm
I’m trying to formulate an adequate response on blog, but some quick points:
I must disagree with Pam, at least partially: there are no credible medical professionals who explain that which some call chronic lyme disease by invoking co-infections or any other similar explanation. There is no credible evidence or credible expert to support the “movement” and that’s what it is…a movement rather than a scientific disagreement.
Therefore, any attempt to talk to, say, ILADS or some such group would simply be giving false balance, implying true scientific disagreement where none exists.
Yes, the piece reads more like an editorial, and yes there could have been more explicit citation of sources, but so much of this has been hashed out over and over, that for those in the know at least, it would be redundant.
If the piece meant to educate on the manufactroversy from the ground up, it fails. If it is meant to be a commentary on the current state of the manufactroversy, it’s pretty good. TT has a great track record at dealing with quacks and cranks, and while this is maybe not the best example, it’s not bad.
December 18th, 2010 at 12:18 am
Peter Lipson: It is a kind of magic trick, or perhaps a kind of sleight of hand — preferred by some bloggers without rigorous training in journalism or reportage– to respond to that which is not said, to read between the lines of others’ statements that which is not there, and to put words in others’ mouths by implication or omission: In other words, to connect the dots with words created not by the source, but by you yourself, without EVER fact checking, and thus to introduce an inaccuracy –to misattribute, and to misquote.
Just because one blogs it does not follow that one is therefore a journalist –take it from me, as a features editor at Discover dealing with freelancers and fielding pitches every day, I am continually shocked at how little about our craft and discipline most of the bloggers-who-pretend-to-be-journalists actually know. Most of them have no training in journalism and do not really understand what it is.
I am sure that if you read my statement carefully you would see that I did not say almost any of what you attribute to me –instead, you are connecting dots with words of YOUR creation. That is not what trained journalists do.
Did I say the journalists should have interviewed ILADS?
Did I say there is absolute evidence for chronic Lyme disease?
Did I say that the concept of chronic Lyme disease can be explained by co-infections –or that scientists are conflating these?
No, I did not say any of these things. But I am saying this: There are in fact quite a number of scientists in mainstream academia who have a far more nuanced view of things, and who believe that science will be explain what many of these patients experience, in one way or another. There are those who see evidence for longer survival of small numbers of spirochetes in quiescent form, causing an outsized inflammatory response. There are those who find evidence for a dysfunction of B cells. There are those who discuss persister cells. There are those who report a spectrum of response depending on the immune system of the patient and the strain of the spirochete. There are many, now, who think that until we unravel the genomics and proteomics of individual strains of the Lyme spirochete, Borrelia burgdorferi, we will never sufficiently know what is going on. There are many, many mainstream scientists in academia –NOT members of ILADS—who believe that the current science is not sufficient to draw a conclusion. Their views are nuanced, complex and open –they are real scientists in the midst of dialoging with nature through their research, not people with rigid unyielding views like the journalists in this article espouse.
How do I know this? Because I spent almost a decade traveling around the country interviewing these scientists. You have got to separate a story about a movement from a story about the science: If you think there is no story about the science, well, what can I say? Based on my own journalistic reporting with dozens of scientists, I flatout disagree with you. If you think the story about science deserves to be conflated with a story about a movement so that they are indistinguishable, I disagree.
I strongly insist that this work is acceptable as journalism. One cannot quote a criminal as the counterbalance to scientists when one could instead quote a scientist (and read this: NOT an ILADS member, but an actual, academic scientist at a major, mainstream university, with articles in PNAS, PLOSone, JAMA, NEJM and the like.)
Anyone who has ever studied real journalism –as opposed to mere blogging—would know this. Perhaps there really is something we journalists learn in J school and on the job that they actually don’t teach in med school or “blogging school” if, that is, we are trained rigorously and well.
I thoroughly disagree that this is acceptable as journalism –it would never pass the bar at Discover Magazine, not in the editorial process and most importantly, not in the fact check. It wouldn’t pass the bar anywhere that acceptable journalism is still practiced, and those places are, sadly, fewer and fewer as time goes on –and as more bloggers enter the scene without training in journalism or the slightest notion of what journalism is.
December 18th, 2010 at 12:23 am
correction, typo in my statement:
I strongly insist that this work is NOT ACCEPTABLE as journalism. One cannot quote a criminal as the counterbalance to scientists when one could instead quote a scientist (and read this: NOT an ILADS member, but an actual, academic scientist at a major, mainstream university, with articles in PNAS, PLOSone, JAMA, NEJM and the like.)
December 18th, 2010 at 3:24 am
Interesting…are you critiquing my comment on this blog as being poor journalism, or are you defending a fringe group of clinicians and scientists and expressing that a failure to give equal time to the fringe is somehow bad journalism?
Or did I put word in your mouth again?
December 18th, 2010 at 4:01 am
yes, of course you are putting words in my mouth.
I am saying, specifically, that, as in most science, there is a spectrum of perspective and considerable nuance among academic researchers as to what is going on with these patients: that the pathophysiology is complicated; and that the biomedicine to explain these patients has, in large part, yet to be done because we are still analyzing the genomics and proteomics of the pangenome –this is work out of Stony Brook, out of Robert Wood Johnson. We are still looking at the variability in the immune system of the human host. All this work is yet to be done.
I am saying that you cannot quote a criminal as counterweight to a scientist, when there are scientists at major universities like Stony Brook, like UC Davis, like UC Irvine, like Berkely, who could be quoted instead, and who could present the the shades of gray and the true context for why there is all this uproar, and what these patients might be like and why they might be sick.
The whole PROBLEM here is that this is presented as a he-said/she-said fight, as a trumped-up controversy, when real science exists to help us light the way. But if you want to make a point without heed to balance, without all the bother of detail, you would, of course, quote the predator who traffics in illegal chemicals and bogus cancer cures instead of the university researchers who see things as less settled, but more complex –and you would leave them out of the story, entirely.
This story is trying to be an expose –but to anyone with real journalistic training, it fails in that goal. It has no depth. It manipulates opinion through use of extreme sources. Only to the blogger who eschews journalistic rigor in favor of drama and hyperpole and connecting dots without evidence would this feel right.
Explicitly: No, I am not supporting a fringe. I am saying that this is a poor job of journalism, a poor job of investigative reporting, incomplete and hyped and shallow and lacking in granularity, and that no matter what the topic, we have to set the bar higher than this or our profession is doomed.
I really am talking about journalism itself.
December 18th, 2010 at 2:36 pm
While it may true that some bloggers are not journalists, it is more true that most journalists are not physicians.
December 18th, 2010 at 4:23 pm
I think there are a number of issues being confounded here. First there is the quixotic critique of blogging vs “real journalism (TM)”. I’d agree that the Trib piece is a bit more like a blog piece than “RJ” but then, many blog posts are better than many RJ pieces and vice versa. In fact, as the existence of this site seems to illustrate, science journalism is in crisis—and science blogging has been filling the gaps, often well, sometimes not.
I agree that there was a ton of nuance missing from the Trib piece, but perhaps their goal was not to write the particular piece others felt they should have.
While Pamela points out that this (should not be) a “he said-she said” sort of thing, and that real science can guide us, the facts on the ground show both to be true.
Medical science has made very clear that the protean symptoms often attributed to “chronic Lyme disease” do not respond to long term antibiotic therapy, and these patients, when studied, show no evidence of spirochetal infection. The NEJM article (http://www.nejm.org/doi/full/10.1056/NEJMra072023) has a useful breakdown of ways to classify these cases.
I’m really not sure what all this hand waving about genomics, proteomics, etc is about.
As critical as some have been about any apparent “bias” to the Trib article, the main arguments seem to be “ask more experts” and “but real people are suffering and we don’t have all the answers—we need more data.”
There are many physicians on the front line of medicine who deal with suffering patients daily, and try to keep them from being preyed upon by unscrupulous docs. One of the main tools in their kit is “we don’t know enough yet” despite the fact that there are some things we really do know here.
December 18th, 2010 at 5:45 pm
I wish someone could write a true expose on all those preying on chronic patients, but this is just not that story. It should have been published as a blog –not put forth as a work of investigative journalism, certainly not investigative science journalism.
I respect your role as a doctor, Peter, but as one of a small number of long-form feature editors still left in mainstream, national magazine science journalism, someone who has been at this for many years, I’ve got to assert MY expertise regarding the requirements there.
Recently –broadening my comment beyond this story– I have been very disturbed on the job by the quality of much of what comes in. It is not journalism –it is something else, a blog, an opinion, an essay. But it is not acceptable for us at Discover Magazine, that’s for sure.
For me it is all about the journalism …dismiss its core ethics and standards as trivial if you want, to me, the erosion is a huge societal loss. Let’s call things by their right names. If something is a blog call it a blog, I have no problem with that –but don’t take a blog and put it out there, Trib and LA Times, as if you have delivered a real, important, investigative journalistic work.
Pam Weintraub
Features Editor, Discover
December 18th, 2010 at 6:02 pm
I completely support Ms. Weintraub’s arguments and points in the article and in her comments in response to Peter Lipson. He is clearly missing the point of nuance and balanced, measured response. Those principles require thought, moderation and fairness; not emotion, bias and sensationalism. This article points out the importance of expecting balanced, researched arguments, sources, as well as the expectation that the reader would be able to have a chance at considering multiple points of view and deciding without author bias.
Furthermore, I support the distinction between trained, qualified journalists and bloggers without that qualification. I am a professional, formally trained graphic designer and, at times, must compete with amateurs who spent some time with Photoshop and sell inferior services at a fraction of the cost. I make it my job to demonstrate the difference between my expertise and ability, and the shortcomings of said amateurs.
I am not saying that all bloggers are amateurs. And I will say that some are very good writers and put forth the effort of thorough and professional research, sometimes on par with journalists. But I think we can agree that the standards and accountability we hold journalists to are considerably more rigid than most bloggers. Bloggers who can, at the end of the day, get away with saying “Hey, I’m a blogger” when their methods, practices and professionalism are challenged.
December 19th, 2010 at 4:15 am
I can relate to Pam’s concerns here about the quality of arguments and the need for evidence in stories like this instead of damnation by association. But isn’t the issue about good v ba d practice, not journalists v bloggers? We can readily find MSM journalists who do lean more on rhetoric than evidence and bloggers who use evidence and what we would all agree is good journalistic practice. I think we make these discussions far more productive if we speak of good and bad practice, and good and bad writing, rather than journalists v bloggers. The distinctions mean more. And even from a strictly rhetorical point of view, I’ll do more to convince either Peter or anyone else of the failures of a given story if I talk about practice than the sorts of people who do this or that.
December 19th, 2010 at 9:03 pm
The Roanoke (Va.) Times began a series today on chronic Lyme disease in Virginia. It’s called “Lost in the Woods” and reporter Beth Macy and I would be interested in hearing your feedback. http://blogs.roanoke.com/lyme/2010/12/17/salvos-launched-in-lyme-dispute/
December 21st, 2010 at 10:22 am
If you do a search on PubMed you will find a number of journal articles that use the term “chronic Lyme.” Whether you call it Lyme, chronic Lyme, persistent Lyme, neuroborreliosis, Lyme arthritis, etc., does not matter. What matters is that there is plenty of scientific evidence that Lyme can persist (or more specifically that the borrelia pathogen can persist) and that people are suffering. To those pooh-pooers/naysayers, I would suggest this: one group of naysayer volunteers will be infected with the bacteria and get two weeks of doxy if a rash shows up; a second group will voluntarily be infected and should get no treatment at all, no matter what. Then let’s see what happens. If there is no such thing as chronic Lyme, then no one needs to worry, do they? Gee, I wonder how many volunteers we’d get…
December 21st, 2010 at 10:31 am
It matters very much indeed.
December 21st, 2010 at 11:28 am
I’m a bit stunned by this critique. It appears that this critique is arguing for the type of bad science journalism that has infected much of the world. It seems to be arguing for false balance, when the authors, who are well respected by the science community itself, appear to have struck the actual balance of the actual state of the evidence. Offering equal time to someone who is pushing a treatment without evidence to justify the treatment does not create balance. It creates a false sense that science is nothing more than a great debate, basically indicating there is no need to do the actual science itself. It’s all just hyperbole.
Uh, no. It’s not.
It’s well beyond time for journalism educators to stop pushing false balance, to start ensuring that science reporters take science classes, and understand the basics of the process. If journalism educators don’t know the basics of the process of science, they should probably inform their students of this, and help them get the knowledge they need.
Callahan and Tsouderos have much to teach your average science reporter. They deserve praise for reporting the actual balance. The false balance of the hit piece presented here does not change that.
December 21st, 2010 at 12:34 pm
Tsouderos obviously didn’t do her homework.
These two scientific articles should be enough evidence to show that Chronic Lyme can exist and that more research is needed:
http://www.northeastern.edu/adc/publications/KL2007Pers.pdf
http://www.empirestatelymediseaseassociation.org/Persistence/Stephen_W_Barthold_Bb_persistence_in_mice.htm
Why doesn’t some real jounalist contact Professor Lewis and ask him if he thinks it is possible?
I have the disease and it always amazes me how the ignorant can claim that something doesn’t exist by their opinions alone. It is only an opinion that Borrelia Burgdoferi is not causing disease after antibiotic treatment. And this opinion has become medical dogma that is used to deny treatment and compassion for thousands, even though it is a fact that Borrelia Burgdorferi persist after antibiotic treatment.
More research needs to be done to investigate whether these persisting bacteria cause disease.
And as for charlantry surrounding Lyme, isn’t it logical that if you persecute the doctors willing to treat a disease, that you will end up with a lot of quacks to fill the void?
The existence of a disease should not be based on the less than desirable human elements around it.
I have come to a point where I believe that we not are going to see a resolution to this in my lifetime, and this shoddy reporting has probably made my opinion more likely to be so.
Lyme is an injustice piled on injustice piled on an injustice and it disgusts me.
December 21st, 2010 at 12:42 pm
Mr. Lipson, why don’t you read the article on persister cells I posted. Tell me that you refute that.
Your blog is very dismissive of the disease. Have you studied the bacteria yourself? Tell me how you know more than microbiologists.
Not only Lyme, but may be many other diseases could be caused by this mechanism.
December 21st, 2010 at 1:36 pm
I’m seeing a great deal of evidence (on this board) of journalists doing the anecdotal game of finding some study, or a few studies, all while ignoring the preponderance of evidence. This is what the anti-vaccine movement does. This is what has allowed us to create a situation where many unproven therapies are sold to the public, while the 4th Estate refrains from pointing out the unproven of these therapies.
Of course, I am presuming these are journalists who are responding.
One more thing: Perhaps science journalists should review their supposed ethics. More and more people now see science blogs as the most trusted place to get news on science. There is a reason for that. If journalists think that attacking those blogs, while arguing for the very poor state of science journalism, is going to help. I suspect that they will be disappointed.
December 21st, 2010 at 1:42 pm
It appears that Ms. Weintraub failed to disclose a conflict of interest. This whole critique seems get smellier and smellier all the time.
http://www.lymeneteurope.org/forum/viewtopic.php?f=7&t=584
December 21st, 2010 at 1:48 pm
Thanks for the lively discussion.
I did want to respond to one issue Kurt Kemmerer brought up: the notion of false balance.
As somebody who has covered global warming, gene therapy, chronic fatigue syndrome, stem cells, and many other medical and scientific controversies, I would never be simplistic enough to call for false balance.
And that is not what I did in this post. I actually suggested that the scientists should have been given more space, and should have been quoted at greater length–not the activists.
From the post:
———
Again and again, Callahan and Tsouderos give far more space to advocates making questionable claims than they do to experts who refute those claims, allowing the serious case for chronic Lyme disease, whatever that might be, to be buried under the dubious claims of advocates.
———
My take, to repeat, is that the Trib story unfairly villainized the advocates and even quotes, at length, an advocate who, the story says, is a criminal. That made the story un-trustworthy to me.
Nor did the story explain why scientists do not think chronic Lyme disease exists (they merely asserted that it doesn’t), nor did it make any effort to explain what’s going on with these people, who, by their reports, are clearly sick, whatever the cause.
I was looking for journalistic objectivity and fairness, not false balance. And I didn’t find that in this piece.
Again, I’m grateful for the discussion, and happy to allow it to continue.
December 21st, 2010 at 3:25 pm
Paul: Science cannot prove a negative. It can only indicate that the evidence for something is or is not there, and the story indicated that the evidence is not there. Science cannot explain what is going on with some patients, and these cases often are those with vague, generalized symptoms. This is always disappointing, but it does not justify any practitioner making a leap of faith to create a diagnosis without full biological evidence for that diagnosis, and then treating the patient based on that created diagnosis.
This is a trend, as the article notes. It is a trend that can lead to harm in many ways. I see it as positive that some reporters are addressing this trend. Unfortunately, the majority appear to be supporting therapies being sold to the public with little to no evidence to support them. To me, this seems like a break of trust by journalism. (Yeah, I know that statement is far too sweeping, but I am in a bit of a hurry.)
At the end of the day, I’m still not sure what could have been added to create more “journalistic objectivity and fairness.” The piece is based in the bottom line of the current state of evidence. If that’s not fair and objective, I’m definitely puzzled.
December 21st, 2010 at 3:36 pm
Kurt,
I don’t know any science writers who are guilty of false balance, or of supporting therapies that have no evidence to support them. Generally that sort of thing comes up with general assignment reporters, who don’t have the training and experience that science writers have.
And of course I know that science can’t prove a negative. But check the following link, to a paper by Steere and others from the New England Journal of Medicine:
http://www.nejm.org/doi/full/10.1056/NEJMra072023
This is a very intelligent and thoughtful examination of the problem of chronic Lyme disease. It might well not be the last word on the subject. Others might disagree. But the Trib piece would have been much stronger if it had included this kind of discussion, from Steere and others, about chronic Lyme. Instead the Trib story seemed to me (I keep repeating myself) to be an argument by character assassination (of the activists).
December 21st, 2010 at 3:57 pm
Paul,
“Check this link” is the classic advocates tactic. The issue is not something that can be settled by trading links to this study and that study. Scientific consensus is the question. A review article does not create scientific consensus. I will acknowledge that this article is different than the usual advocacy (check orac’s piece on this story for some great examples of how advocates go at things), but it does not change the scientific consensus, at this point in time. If it doesn’t do that, what would the purpose of reporting it be?
All right. I appreciate the discussion. I am going off to a wonderful place without computers.
Happy New Year.
December 21st, 2010 at 4:02 pm
What! Can’t prove a negative? You are assuming that they have looked close enough whether the bacteria have survived.
Here is evidence of chronic bacterial infection:
http://www.microbemagazine.org/index.php/09-2010-home/2848-persister-cells-and-the-paradox-of-chronic-infections
Why don’t you contact Professor Kim Lewis and ask him if it is possible?
More research needs to be done.
I think you are very biased Kurt and have much hubris.
December 21st, 2010 at 4:07 pm
Scientific consensus? Has consensus always been right? If you believe so, I have a bridge to sell you.
What is usual is for an opinion to dominate by being a consensus, and many times in history these opinions, which have had so much weight, have been wrong.
And with Chronic Lyme not every agrees whehter it exists.
December 21st, 2010 at 4:12 pm
Hmm, those two articles show lyme persists and that persister cells maybe causing chronic infection. No link, no story there?
I give up. Time hopefully will tell what is the truth.
December 21st, 2010 at 6:56 pm
Trine practices her own brand of hit and run journalism, with all of the benefits of good reporting (increased pageviews) and none of the drawbacks (taking the time and effort to write a thoughtful piece of journalism).
The real meat of the story, along with the ensuing debate, isn’t whether Chronic Lyme exists as such, it’s whether the illness is caused by an ongoing infection with Lyme-causing bacteria (ie true ‘Chronic Lyme’), is some sort of autoimmune process triggered by the initial infection, is a post-viral fatigue syndrome similar to what has been documented to occur after infection with any number of pathogens and/or infectious illnesses including EBV, Ross-River Virus, Q-fever, SARS, etc., primary infection with an alternate microorganism, etc. Oddly enough this is the one thing that Trine’s article never even touched on!
December 22nd, 2010 at 4:29 pm
The article nominally attributed to Ms. Tsouderos contained two much information for a former food editor at the Chicago Tribune. It was derisive, scornful and righteously indignant all at the same time. What fools are these “Lyme doctors” who would question the high priests of Medical Science?
This article was the conceptual child of an insider in the Lyme controversy. It was too bitter for a reporter. Who was really behind it?
The Chicago Tribune is a newspaper in decline. The full-page advertisers get special attention and are able to get articles published. Call them infomercials. There is no attribution or references. The deep sources hide behind journalistic confidentiality.
Some doctors on the East Coast had dreamed of becoming multimillionaires from patents on portions of the Borrelia (Lyme disease) bacteria. Those dreams crashed in the debacle of the Lyme vaccine. The vaccine was supposed to become a billion-dollar cash cow. Tragic complications of Lyme vaccine including paralysis and death destroyed that dream.
Let us not focus on the Lyme article. It does not matter who really wrote it. In its perverse way it also brings definition and focus. Bad examples also teach.
Borrelia does cause chronic disease. Its close cousins, Syphilis and Helicobacter are already famous for it. Lyme is a complex disease that provides subtle clues easily missed by prescription pad scientists interested in quick patient turnaround.
Progress in science occurs with intuitive and inspired leaps of the human mind. Double-blind placebo-controlled studies (DBCCS) are the expensive playground of the pharmaceutical giants. Einstein and Ehrlich never ran them. Doctors in their training are told that the DBCCS is the “gold standard”.
The English philosopher Isiaih Berlin classified thinkers as foxes or hedgehogs. The hedgehogs worked tirelessly on a small patch while the foxes leap readily to new ground. Yes we value our hedgehogs but let us not put them in charge.
Lyme is a pattern recognition disease. Huge amounts of data are created by the health care system but never analyzed. A DBCCS with less than one hundred patients is not superior to the analytical skills of dedicated and insightful clinicians who are able to filter large amounts of data.
December 25th, 2010 at 5:57 am
First of all, thank you for pointing out with such intelligent detail how the Tribune article was biased. This article is the most thorough picking apart of that representation of bad journalism that I’ve seen.
Also, however, I have an issue to address.
I see here that you say patients are not experts. It’s true that patients of a disease are not scientific experts necessarily, though they could be, nor are they doctors, though some are, but that does not mean that they aren’t a certain kind of expert. Someone who suffers from a disease is certainly a very legitimate expert on that disease, not necessarily in scientific terms, but in life terms.
When Lyme patients speak, sometimes there is anger. This anger gets deemed as crazy. However, patients are not angry simply that they have Lyme, they are angry at being marginalized by society. They are angry because they work hard and put taxes and their own money into premiums so that they can get help when they are sick. They are angry because they are lied to, because when they get sick with Lyme, they get the help they have paid for. They get told they don’t know what’s going on with their bodies, they get told they are crazy when they are not. They are then abandoned to suffer from a debilitating disease. These are all very legitimate reasons to feel anger about. Since when is feeling angry equivalent to being crazy?
Often, the answer to finding a cure for disease is not just leaving the situation in the hands of scientists and doctors. Yes, they get all the credit, but it’s often a collaboration between them and the patients who actually have the disease.
Not being a doctor or a scientist does not mean you are stupid, and it definitely does not mean that you don’t know what’s going on with your very own body. As a matter of fact, only one person is an expert on your body. You.
To say that the patient infected with a disease is not part of the solution to the disease is, I would say, the biggest problem with the health care system today. The idea that one has no power over one’s own healing precludes the most important person from participating in the curing of the disease. This idea is harmful because it is inaccurate. It gets in the way of a solution. Our society needs to reframe this idea of what it is to find a cure for a disease to include patients.
Healing is a collaboration between healers (like doctors) and those who are infected.
December 29th, 2010 at 11:31 am
Adi,
I agree that patients have their own kind of expertise. I hope it was clear that I was referring to the other kind of expert when I said “experts.” Further, the point was that the reporters misused patients, making them look foolish or crazy, rather than simply conveying what smart patients said about their illnesses.