Internet Articles
Internet Articles
26 April 2010
A scene from "Under Our Skin" in which a former patients searches for his Viagra? Or maybe not.
Lyme disease: Science prevails, again
‘Documentary’ to the contrary, there’s no evidence that a chronic form of the illness exists
Dan Rodricks, Baltimore Sun
April 27, 2010
Last summer, I had my first experience with the Lyme disease people — those who are convinced that the dangers of the tick-borne disease are much greater than mainstream science says — when "Under Our Skin," a film about the disease, played at Baltimore's Senator Theatre.
The film had all the markings of a documentary: extensive interviews with Lyme disease patients and people who believe they had the disease, doctors and researchers; smartly produced graphics; original music and location footage from throughout the United States. The film, with no narrator, had a cinematic elegance that made it seem authoritative. Someone had invested significant time and money to bring to light not only "the hidden story of Lyme disease" but a "haunting picture of the health care system and a medical establishment all too willing to put profits ahead of patients."
"Under Our Skin" received strong reviews; it won awards at several film festivals and was one of 15 Academy Award finalists for "best documentary feature."
But "Under Our Skin" was hardly a documentary.
Rather, it was a polemic, based in speculations and full of assertions, including allegations of unethical behavior by scientists who have been researching Lyme disease and its treatment. The film was heavy on anecdotes and insinuations, short on science. In fact, it was condemning of science. It sided fully —unquestioningly — with those who believe Lyme disease is a chronic condition requiring long-term, unconventional treatment, and it made heroes of "Lyme literate" physicians who had been disciplined for providing that treatment.
The Lyme disease activists did not appreciate my criticism of the film; they also expressed anger in letters about the way I presented the subject on two radio shows on WYPR, one of which included an interview with a Johns Hopkins expert in infectious diseases.
Given the extent of anti-science sentiment (see climate change), I guess I should not have been surprised that mainstream medicine had been dismissed by Lyme disease activists. I lost count of the number of angry e-mails I received on this subject.
[snip]
Posted by Relative Risk at 22:23 0 comments Links to this post
Labels: Film
03 February 2010
So the Lyme disease propaganda film (paid for, according to the credits, by quacks and kooks) doesn't get a stroll down the red carpet next month. I guess the cartoon category was full. Whatever the reason, this celluloid conspiracy theory is going to have to continue premiering in the country's public libraries and church basements looking for an audience of believers. (Maybe Mulder will show up.)__________________By the way, check out the LymeNet Europe postabout who voted for this awful bit of disease porn.
Posted by Relative Risk at 11:34 0 comments Links to this post
Labels: Film
29 January 2010
by Sarah Greene
29th January 2010
Creation: The good, the bad, and the ugly: A new movie about Charles Darwin's life and work struggles for distribution in the US, where many refuse to subscribe to the theory of evolution
[snip]
The ugly news is that Creation had difficulty finding a US distributor and it remains uncertain whether it will be widely screened before American audiences. Not only does a recent Gallop poll reveal that only 39% of Americans believe in evolution (a "half-baked theory" that informed Adolph Hitler's genocide, according to the Christian-influenced Movieguide.com ), but apparently the majority of US moviegoers prefer flying dragon-vampires to historical drama. According to director Jon Amiel in a Wired.com interview, "The fact is that any independent movie that's A) about something, B) period and C) a drama, is likely to have a very hard time finding distribution these days."
Did this sad commentary on American society not only limit distribution, but also inform the distracting, ghost-infused story line of Creation? Regardless of the film's few letdowns, it succeeds at portraying a smooth-faced Darwin in love with ideas and with life, grappling with a question (often with his actual words! eloquent!) that remains impossibly frightening to many, a century-and-a-half later. One can only pray (to whomever) that Creationists and their children have ample opportunity to see this movie and many more of its ilk, conveying the beauty and complexity of science and evolution.
-
Posted by Relative Risk at 16:17 0 comments Links to this post
Labels: Film
01 January 2010
One fantasy-filled film about Lyme disease is bad enough, but two is inexcusably excessive. Don’t people have anything better to do with their time and equipment than concoct plots even too ridicules for “The X Files”?
A NYT reviewer wrote of this latest video nonsense: “the film chronicles their 18-month investigation into the diagnosis and treatment of Mr. [Timothy] Grey’s younger sister, Lori Hall-Steele, who died of Lyme disease in Michigan in 2008. Then things fall apart, so fast and so furiously that it’s impossible to know where verifiable science leaves off, and conspiracy theory begins.”
Apparently, Mr. Grey isn’t much of an investigator. According to the published obituary, Ms. Hall-Steele died of ALS (also called, Lou Gehrig's Disease), and not a common bacterial infection readily treatable with common antibiotics.
-
Posted by Relative Risk at 10:39 0 comments Links to this post
Labels: Anti-science, Film, Psych
21 November 2009
Oscar documentary scandal: The real reason that too many good movies got left out
by Owen Gleiberman
Yet as I look over this list, I see far too many movies that don’t belong there — and, frankly, too many that made it because they were about subjects that rendered them “worthy.” Take, for instance, Under Our Skin, a documentary about Lyme disease that embraces, with bits and pieces of skimpy evidence and a whole lot more paranoid leftist fervor, the notion that “chronic Lyme disease” is a condition that the medical establishment is locked in a conspiracy to deny the existence of. The filmmakers actually bungle what should have been their real subject (that the belief in chronic Lyme disease has become something of a cult, one that can ruin the lives of the people who think they have it). But the bottom line, to me, is that Under Our Skin is not a very well-made movie. It played in theaters for about two minutes, and frankly, that’s more or less what it deserved.
-
Posted by Relative Risk at 15:55 0 comments Links to this post
Labels: Film
09 October 2009
Under Our Skin: Epidemic proportions
Kenneth Burns on Friday 10/09/2009
My favorite documentaries are by filmmakers like Frederick Wiseman and Barbara Kopple, who let the cameras roll as interesting people go about their interesting lives. The resulting films feel emotionally true and, often, satisfyingly ambiguous.
So I'm not thrilled about the recent vogue for polemical documentaries, which instead set out to argue already-settled points. In the hands of skillful showmen like Michael Moore, these films can at least entertain us, even as they manipulate us.
But not every polemical documentary is a Michael Moore film. That's certainly true of Under Our Skin, an unfocused documentary about Lyme disease, the tick-borne illness that director Andy Abrahams Wilson would have us believe is a human-created epidemic that could exterminate us as a species because doctors and insurance companies are conspiring to neglect patients who need long-term antibiotic treatments.
Now all of that may be true. I'm certainly not qualified to evaluate the science. But I can say that despite its assured tone (and its melodramatic music, and its cutesy animations, and its cynical use of children), Under Our Skin raises far more questions than it answers.
Certainly the film reports much that is intriguing and disturbing. Some people suffer crippling chronic pain and other baffling symptoms, and their doctors don't have solutions. A community of patients and researchers — including a guy who does research in his basement, next to the furnace — think the culprit is Lyme disease.
But mainstream scientists disagree. The disagreement is aired in dueling interviews, but the exchanges are too quick and too dense to be illuminating to lay audiences.
The film reminds me of the community of people who believe autism is linked to childhood vaccination. Like them, the people in the film are suffering, and they are sad, and they want answers. That's understandable. But when the talk turns to conspiracy, I just don't know what to think.
-
Posted by Relative Risk at 09:36 0 comments Links to this post
Labels: Film
02 October 2009
A fine movie review of Andy Wilson's lopsided docudrama in the October issue of World Neurology by John Halperin. The review is entitled, "Lyme documenatry misleading, perhaps irresponsible."
John's being kind. It is irresponsible. At the very least. In any case, it's important to circulate this insightful review by an expert in neurology and infectious diseases.
And a nice letter from the CDC Director reaffirming the value and validity of the IDSA treatment guidelines for Lyme disease. That should be posted shortly.
Posted by Relative Risk at 10:27 0 comments Links to this post
30 September 2009
Directed by: Andy Abrahams Wilson
Cast: Dana, Mandy, Jordan
Running Time: 1 hr 45 min
Rating: Unrated
Release Date: September 26, 2009
PLOT: An exploration of Lyme Disease from the point of view of people afflicted with the disease as well as doctors who’ve dedicated their career to helping Lyme patients in unorthodox manners.
WHO’S IT FOR? Anyone except hypochondriacs. I’m not joking, any undiagnosed aches and pains will suddenly become Lyme disease.
EXPECTATIONS: I was hoping for a well balanced documentary that made an interesting case for why Lyme disease is an “epidemic.”
SIGHTS: Under Our Skin must have had a decent budget because it looks great. The scenes filmed on location look good and there’s some nice illustrative animation. I’m really surprised, looking as good as it does, that they didn’t get a wider release.
[snip]
Unorthodox, hypochondriacs, and “epidemic” are good words to keep in mind. So too is the phrase, “decent budget.”
Yes, that’s an interesting point about the budget. Where did Wilson get the money for this wild-eyed polemic about a common tick-borne infection that is non-fatal, non-communicable, antibiotic-responsive, and seasonally- and geographically limited in scope?
Probably from the very people making money off of the film and the infection: the so-called “Lyme Literate” private practice physicians who treat Lyme for months or years at a time (and who starred in the film), and the Internet-connected activist groups who solicit money from the gullible and think Lyme disease is The Plague of the 20th and 21st centuries.
If you skip the movie--it’s longer and more pointless than a Quentin Tarantino movie-- and go right to the credits, there’s a long list of well-known Lyme quacks, activists and organizations who supported the film.
So it would seem obvious that the activists and their doctors bought themselves a propaganda film, and are busy hawking it on their numerous web sites.
-
Posted by Relative Risk at 01:57 0 comments Links to this post
Labels: Anti-science, Film
Maybe that was the point.
Mon, Sep. 28, 2009
New documentary follows the heated medical debate over Lyme disease
Philadelphia Daily News
AS ANY Lyme disease sufferer can tell you, stress makes the symptoms worse. This is a problem, because a Lyme diagnosis will send you straight to the Internet for research, and there's nothing more stressful than reading about Lyme on the Net.
Online, you will find the kind of angry debate over disputed science that, in our combative age, dominates discourse among patient advocates and factions of the medical establishment. The most basic questions inspire the deepest disagreement.
Can your Lyme become a chronic disease? Might you need more than one course of antibiotics?
You seek out the big brains, but they are split. One Ivy League institution says no, another says yes. The International Lyme and Associated Disease Society says yes, the Infectious Disease Society of America says no. In fact, the IDSA says "Hell no," although it may completely change its mind later this year, as did the Mayo Clinic. What's a patient to do?
Really? And which Ivy League schools might those be? As for the Mayo, I just checked the website and they’re still providing evidence-based information. As for ILADS, it’s a bunch of quacks and crooks masquerading as a legit medical society. Most of ILADS officers have been in some kind of legal or professional trouble, none have any expertise in infectious diseases or clinical research, and their headquarters is a mail drop in Bethesda, Maryland.
[snip]
On the other hand, there are those who say there is no hard-to-treat form of Lyme. The IDSA says hard science - double-blinded, placebo-controlled studies in humans - does not support the idea that viable Lyme bacteria can beat a routine course of antibiotics. And it's the IDSA that publishes guidelines most physicians follow. Those who do not can be targeted by medical licensing boards, which is what happens to one physician featured in "Skin," allegedly for treating patients who did not have the disease.
A big bone of contention in the Lyme debate, as "Skin" shows, is the way groups like IDSA's Lyme panel are composed. Many of the expert panelists are expert because they hold patents on Lyme tests or treatments - creating, detractors say, obvious conflicts of interest.
No, they’re experts because they teach, do research, see patients, and publish. If you ask the PTO they’ll tell you the vast majority of filed patents never yield the patent holders a dime. Besides, it’s not the patent; it’s the clinical lab doing the tests that makes the money. Just ask the ILADS quacks why they all use the same California lab for their Lyme tests.
So thought Connecticut Attorney General Richard Blumenthal, who sued the IDSA, as noted in the film. "Under Our Skin" was completed before the settlement, one that disbanded the old IDSA Lyme board and directed it to re-form without doctors with financial ties to Lyme-related companies. The new board heard testimony from ILADS and others, to be considered before new guidelines are issued later this year. Patient advocates are hopeful the guidelines will be liberalized. But not optimistic.
That’s not going to happen. Politicians like Blumenthal have been trying for centuries to recreate the world in their own imaginations. They keep failing.
[snip]
Patient advocates say there is a great deal at stake, [yeah, income for ILADS’ private practice quacks] since Lyme specialists in the ILADS camp want the latitude to extend antibiotic treatment in ways they believe are essential to preventing later-stage problems, which can be severe [and to bill insurance companies for unnecessary, but expensive treatments].
The screening of "Under Our Skin" will be followed by a Q&A with panelists, including Chester County Lyme physician Anne Corson, who does not mince words when it comes to the current IDSA guidelines.
"The IDSA guidelines are useless," said Corson, a plainspoken woman who says she prefers to treat patients until they get better. "They've been the focus of a tremendous amount of criticism by the ILADS. We've presented reams of scientific proof of our viewpoint, supporting the guidelines we use in treating these ailments.
Corson has no research background or training in infectious diseases. If there was any rational, demonstrable basis to the ILADS guidelines for treating “chronic” Lyme patients there won’t be any ‘chronic” Lyme patients and therefore there would not be a controversy. Yet, the controversy remains because quacks like Corson want to keep pumping antibiotics into people until they’re out of cash to pay for them, they develop a complication from the antibiotics, or the patient decides on his or her own that they’ve had enough attention and move on to some other phobia or aliment.
"For me, working in the trenches, taking care of sick people in Southeast Pennsylvania, which is the epicenter of this disease, [Did the epicenter shift; I thought it was Ct and NY?] I use the ILADS guidelines. The IDSA does not help people with the acute and chronic stage of the disease."
The IDSA argues there is still no ironclad study in human Lyme patients proving post-antibiotic viability of Lyme bacteria, and points out that any long-term antibiotic treatment can be dangerous.
ILADS counters that there are studies that show it persists in other mammals [right, let‘s model human therapy after that of lab work on rodents, lizards, and birds], and cites scientists on the frontier of microbiology are learning that the Lyme microbe is an unusually tough little bug.
[snip]
Yes, all successful pathogens are actually “tough little bugs.” Check out Strep pyogenes or Staph aureus sometime.
"Skin" documentarian Andy Abrahams Wilson has talked with Lyme physicians who believe that different symptoms in different areas of the country reflect different strains of infection.
Nice theory. Might even be true. But right now where’s the proof and what‘s the point? The bug is still susceptibility to common antibiotics.
-
Posted by Relative Risk at 01:44 0 comments Links to this post
Labels: Blumenthal, Film, IDSA
15 September 2009
Filmmaker revives discussion of Lyme diseaseSan Francisco Chronicle Sunday, September 13, 2009The first question filmmaker Andy Abrahams Wilson hears about his latest documentary: Lyme disease? Really?
Well, that’s probably because the things portrayed in his propaganda film bear no resemblance to the common bacterial infection called Lyme disease.
[snip]
"If this were HIV or West Nile virus," Wilson said, "we'd be doing everything we could."
So 30 years of federally funded research, clinical trials, education campaigns, and tens of millions of dollars spent is not enough? What, I wonder, would be enough? Especially, when you consider Lyme is non-fatal, non-communicable, geographically- and seasonally-limited and readily responses to common antibiotic treatments. As for HIV, it’s a communicable, ultimately fatal, viral infection currently ravaging large swaths of the developing world, and adding great expense to the healthcare costs of the developed world. West Nile is a usually mild viral infection (only 20% of infected people will show symptoms) that can sometimes cause serious post-infectious sequelae in older patients (West Nile Poliomyelitis, for example). As of September 8 this year, there have been 196 cases of WNV reported to CDC, and 6 deaths. Strange examples to compare with Lyme disease.
[snip]
As Wilson learned, patients are often misdiagnosed with maladies ranging from chronic fatigue syndrome to multiple sclerosis to Lou Gehrig's. Making the disease more difficult to identify, as many as 50 percent of all Lyme tests are inaccurate, and patients are often told their case is psychosomatic. Because there's no cure (antibiotics are an early treatment), many sufferers are left to treat their symptoms with no hope of solving the disease. "I uncovered a whole world of untold suffering," Wilson said. "And what seemed to me like a medical fraud."
No, patients are often misdiagnosed as having Lyme disease, thus delaying proper treatment of more serious conditions. Yes, there is a cure: antibiotics. But no, there is no cure for post-infection cartilage, nerve, or tissue damage. But then that’s true of all infections; no one grows back a toe lost to gangrene, no matter how many antibiotics they continue to swallow. As for “medical fraud,” well, there’s plenty of that among the private practice quacks who prey on people who think they have “chronic” Lyme disease. Wilson’s propaganda has probably greatly enriched them by bring more confused and worried patients to their offices.
[snip]
Wilson came to a multipronged conclusion. First, because Lyme is not easily defined and diagnosed, it's difficult to find a singular cure. Second, the best treatment can be antibiotics, which generate little profit for the big pharmaceuticals.
"But there is a lot of money in keeping people chronically ill," Wilson said, noting that steroids, painkillers and a slew of drugs can treat the symptoms of Lyme.
Wilson sounds like a idiot. Big Pharma isn’t treating patients, doctors are. They can order up all the generic antibiotics they want. And charge whatever they want. But most don’t knowing that persistent symptoms following an infection are usually the result of permanent damage from that infection. Treatment then may involve common anti-inflammatory agents and pain meds such as gabapentin.
The only people getting rich from Lyme disease are the so-called “Lyme Literate MDs” heroically portrayed in Wilson’s cinematic commercial for their services. And maybe Wilson myself. His film seems to be advertised on the web sites of most Lyme activists and predatory quacks.
[snip]
-
Posted by Relative Risk at 11:49 0 comments Links to this post
Labels: Film, Lyme disease, Quackery
06 August 2009
posted 08-06-2009 on LymeNut by Kris Newby, one of the producers of the propaganda film on Lyme disease. She writes, “The Infectious Diseases Society of America (IDSA) just requested from Open Eye Pictures copies of UNDER OUR SKIN to be be given to each of the nine Lyme guidelines review panelists. We’re happy and humbled that the film is proving its potential to affect policy and people's lives.”
Happy and humbled? Please. What rot. I can’t imagine how this crude, celluloid propaganda has affected anyone’s life, except perhaps to make more sensible viewers wonder: “Is this damned thing ever going to end?” and “Why’s this healthy, normal, articulate park ranger in so much of a movie about an allegedly deadly infection?” and “How much time has Dr. MacDonald spent alone in his basement?” and “Maybe these patients and their quack doctors deserve each other?”
No, I’m sure the requested copies for the panel members are intended to drive home the point that many of these patient/activists are nuts—as if that wasn’t evident from some the presentations and documentation sent to the review panel—and these LLMDs and ILADS guys are charlatans and quacks, and are a general threat to the health and wealth of their patients.
I’m sure the film will have an effect on panel members, but it’s not likely to be the effect Newby hopes for.
Posted by Relative Risk at 11:39 0 comments Links to this post
Labels: Film, Lyme disease, Politics
28 July 2009
The controversy over Lyme Disease -- whether a chronic form of the disease exists, and whether long-course antiobiotics should be prescribed for those suffering from what they believe are its lingering symptoms -- goes live on the Internet.
…the Infectious Diseases Society of America, which wrote the treatment guidelines for Lyme, will hold a day-long hearing that will be Webcast live through its web site. The hearing is being held in accordance with a settlement of an anti-trust case brought against IDSA by the Connecticut attorney general, who alleged that the treatment guidelines were not drafted fairly and that several members of the drafting panel had conflicts of interests they did not disclose.
Dr. Paul Auwaeter, head of the Division of Infectious Diseases at Johns Hopkins and a member of IDSA, says the suit was politically motivated, that sound medical science has found no evidence of chronic Lyme and that long-term antiobiotic use can be harmful to patients.
Auwaerter, a recent guest on my Midday show, said he doesn't expect any new medical findings to come of the hearing, and he doesn't believe the hearings are even necessary. The IDSA, he said, reluctantly settled with the Connecticut AG, agreed to a new panel and the July 30 hearing to avoid a lengthy and costly legal battle.
There are many Americans who believe they have chronic health problems related to the Lyme Disease they got from a tick bit. They believe that so-called "Lyme-literate" doctors should be allowed to prescribe antibiotics to alleviate their suffering. A recent polemical film, Under Our Skin, suggested that Lyme Disease is responsible for all sorts of conditions that mainstream medicine has ignored and that the disease may even be sexually transmitted.
Since commenting on that film, I've received dozens of e-mails and posted comments [read, hate mail] from people who claim to have the chronic Lyme disease that mainstream medicine says does not exist.
-
Posted by Relative Risk at 10:54 0 comments Links to this post
Labels: Film, Internet, Lyme disease, Politics
13 July 2009
Some colleagues popped into the recent screening of the propaganda film, “Under Our Skin” at the Spectrum Theatre in Albany. (God, I hope they didn’t pay to get in.)
A Q&A followed the 90-minute video rant and Dr. Steven Bock, who “merges traditional medicine with alternative and complementary medicine, combining the modalities of acupuncture, functional and nutritional medicine, homeopathy, herbal medicine and environmental medicine” into what I imagine is probably a medical train wreck, hung around to answer questions. My own question is who was dumber: the questioners or Bock?
Apparently, he told the vacuous audience that about 20% of Lyme disease is transmitted by mosquitoes. Then he apparently claimed Lyme disease is a STI so the partners of anyone with “chronic” Lyme probably need long-term antibiotics too.
Wasn’t someone just arrested for making the same claims and treating patients for non-existent Lyme disease?
I don’t understand where these so-called LLMDs come up with this stuff. Are they morons or just liars? Anyone know?
-
Posted by Relative Risk at 21:02 0 comments Links to this post
Labels: Film, Lyme disease, Quackery
10 July 2009
This is interesting: two days of radio broadcasts about Lyme disease and the propaganda film, Under Our Skin. This time it was Connecticut Public Broadcast Network interviewing Kris Newby and Bernard Raxlen from the Lyme Movement, and Yale’s Gene Shapiro as the lone voice of reason. All in all, a good show, briefly marred by the call-in lunacy of Kathleen, a well-known Lyme nutcase and former convict and mental patient.
Newby, the film’s producer, said all the usual Movement things about the alleged inaccuracy of serologic testing for Lyme disease. Isn’t a lie of omission still a lie? I ask because it’s compulsory among Lyme activists to insist that diagnostic tests are no better than 50:50 or that they miss between 75-80% of positives. That’s true…but only in the acute phase of the infection. It takes time to make antibody. If I’m vaccinated for Yellow Fever at 10AM and someone draws blood to look for anti-Yellow Fever virus at 10:30, they’re not going to find anything. They’re not going to find anything the next day either. Or the day after. It takes time to mount an immune response. This is something the activists regularly, indeed religiously, ignore.
The reality is “in patients with later manifestations of the infection, 2‐tier testing ha[s] a sensitivity of 100% and a specificity of 99%. Similarly, the VlsE C6 peptide ELISA ha[s] a sensitivity of 100% but a specificity of 96%” (Clin Infect Dis. 2008 Jul 15;47(2):188-95).
So why do activists compulsively lie about this important fact? I suppose, one, to scare people and two, to avoid having to face the fact that many of them don’t actually have Lyme disease. In the end, lying to oneself or to lying to others amounts to the same thing: it’s a lie.
Talking about chronic Lyme disease, Newby also brought up Willy Burgdorfer, the namesake of B. burgdorferi. She claimed Burgdorfer said Lyme bacteria could lay dormant in people and then re-emerge years later to cause infection. I don’t know if Willy actually said that, but it’s helpful to remember that he’s an 80-year-old retired PhD and his MD is entirely honorary. He doesn’t see or treat patients.
Gene Shapiro, on the other hand, does see and treat patients. So apparently does Bernard Raxlen. But he’s a psychiatrist so why is he playing the role of an infectious disease doc and plugging people into i.v. antibiotics? If someone presented with AV blockage would he implant a pacemaker? Does he debride and resection for gangrene or necrotizing fasciitis too? How would he feel about an oncologist practicing psychiatry? A regular jack-of-all-trades.
Here’s some of the bio that was included on the CPBN website about Raxlin: “After a decade of private practice (1978-1988) pioneering nutritional and integrative psychiatry/ medicine, he became interested in tick-borne disease (Lyme Disease) because of the chronic undiagnosed symptoms of his patients. Dr. Raxlen's practice was situated in the highly Lyme endemic areas of Westchester and Fairfield counties. Over the past 15 years, he has successfully treated over thirty-five hundred cases of Tick- Borne Disease (specializing in neuropsychiatric and neurocognitive complications). Over 90% of his practice is now devoted entirely to Chronic Lyme Disease (CLD) and co-infections.”
Where does he find all those chronic Lyme patients? And what exactly does “successfully treated” mean?
Odd. Nothing at all about his medical license problems in N.Y. or CT. And nothing about the fees he charges for seeing patients. I hate to direct anyone to his website, but here’s the dollar cost of Raxlen’s care.
So listeners got a fair sampling of the Lyme controversy from a biased film producer, a local activist, a call-in nutjob, an expensive psychiatrist with no training in infectious diseases, a Yale professor and infectious disease expert, and finally a call-in from someone who found the Lyme Movement to be too hysterical and the infection to be not too big a deal.
Still, the lies continue. The hysteria continues. The Internet disinformation continues. And “Under Our Skin” is playing in Hartford. Maybe Blumenthal will be out front handing out tickets.
-
Posted by Relative Risk at 11:59 0 comments Links to this post
Labels: Film, Lyme disease, Politics
09 July 2009
Dan Rodricks, a columnist for the Baltimore Sun, played host to Andy Wilson, the chief propagandist for the Lyme Disease Movement yesterday. You can hear the July 8 interview here.
As news, there wasn’t much that Wilson hasn’t endlessly repeated before. But that’s part of the art of propaganda: lies and disinformation must be regularly repeated. I was interested to hear him say that he tried to avoid talking about Lyme disease (a tick-borne infection) as a “tick centric” illness. Instead, he continued the Movement’s efforts to confuse the public by suggesting the infection was passed from mother to child, and because B. burgdorferi shares the same basic morphology as T. pallidum, sexual transmission “cannot be ruled out.” Right. By that logic, B. burgdorferi also causes gum disease because it looks like T. denticola, and it can be contracted from contaminated water supplies because it looks like Leptospira interrogans. Maybe as an “artist,” he’s just caught up in that old “form follows function” philosophy. Or maybe he just doesn’t know anything about microbiology.
He again accused the IDSA of being Lyme “gate keepers.” There must be some big holes in the fence though. The European Union’s physicians and scientists aren’t under the sway of the IDSA. Neither are the American College of Physicians, the American Academy of Neurology, or the American Academy of Pediatrics.
At one point in the interview, he said, “I probably know more about Lyme disease than a lot of physicians do.” Well, that might be true of some of the quacks he advertises in his film, but when pressed by Mr. Rodricks about whether he would say he knew more than the head of infectious diseases at Johns Hopkins, Wilson confessed, “No, I wouldn’t. I’m a film maker.”
Later, Mr. Rodricks read an email from a caller/listener asking about the motives the IDSA might have for not wanting to treat an infection they could not detect. It’s a key question because the Lyme movement and Wilson believe there’s a conspiracy to deny treatment to people with Lyme disease, and to deny the existence of a Lyme disease epidemic.
Wilson didn’t answer the question until Mr. Rodricks brought it up again a few minutes later. Finally, he made some vague comments about the IDSA being a collection of “academic physicians” who don’t see enough Lyme patients, their reputations being at stake, grant money, and patents for vaccines and test kits.
He and his friends in the Lyme Movement keep saying things like this, but it doesn’t explain motive. How does having an NIH grant to study the stability of linear plasmids in B. burgdorferi motivate a physician to not treat someone for presumptive Lyme disease? How would the presence or absence of a Lyme disease vaccine motivate someone to dismiss as meaningless the number of annual reported cases of Lyme disease? (If you were pushing a vaccine wouldn’t you want to hype the danger and the number of cases? And really, what does the existence of a theoretical vaccine have to do with treatment?) How would having a patent for a possible diagnostic test motivate someone to dismiss chronic Lyme disease as an example of a persisting infectious disease? After all, a patent is just a piece of paper. It may not be an actual commercial product. To make any money it would have to compete with the 70 or so existing tests already approved by the FDA. And in the end, it’s not really the patent that matters, but rather the willingness of commercial diagnostic labs to use the test covered by the patent.
Wilson went on to say there’s a lot of money in vaccines. Actually, there’s not. That’s why there are so few vaccine manufacturers left in the U.S. Too little profit. Too much cost. Too much potential for suits and bad PR. There’s some basic research being done on various immunogens and delivery systems for a Lyme vaccines, but don’t expect to ever again see a commercial product for people. The Lyme Movement saw to that.
In the end, Wilson turns out to be just another anti-science, anti-expert conspiracy theorist. He’s helping to spread pseudoscience. He’s promoting whacky alternative medicine and some of its practitioners. He’s another Oprah or Jenny McCarthy or Andrew Wakefield with a camera.
Mr. Rodricks seems to think so too. Read his summation, “A Polemic on Lyme disease”here.
-
Posted by Relative Risk at 12:02 0 comments Links to this post
Labels: Anti-science, Film, Lyme disease
10 June 2009
Turns out I know that "uninvited guest" "pounding on the door."
He's not happy about the ficitious account provided on Newby's blog.
I'm sure he'll have more to say about it.
-
Posted by Relative Risk at 14:34 0 comments Links to this post
Labels: Film, Lyme disease, Politics
09 June 2009
From the folks who brought you the Lyme disease propaganda film....
On February 28, 2007, the UNDER OUR SKIN film crew interviewed Willy Burgdorfer, Ph.D., M.D., and Scientist Emeritus at the National Institutes of Health (NIH), for three hours at his home in Hamilton, Montana. Dr. Burgdorfer is the discoverer and namesake of the spirochete (a type of bacterium) that causes Lyme disease, called Borrelia burgdorferi. He has received numerous awards, including the Robert Koch Gold Medal, the IDSA Bristol Award, the Schaudinn-Hoffman Plaque, and the Walter Reed Medal. He is a coeditor of the book, “Aspects of Lyme Borreliosis,” and has published over 220 research papers.
Just as we began filming, there was a pounding on the door, and we found ourselves facing someone who turned out to be a top researcher at the nearby Rocky Mountain Laboratories, a biolevel-4 NIH research facility. Standing on the porch, our uninvited guest said, “I’ve been told that I need to supervise this interview. This comes from the highest levels. There are things that Willy can’t talk about.”
We were stunned.
Me too. It doesn’t sound anything like the 2006 interview published in Vector-Borne and Zoonotic Diseases. It sounds made up. I’ll bet Kris Newby, the producer, wrote it. I’ll eat my words after I view all three hours of the taped interview. I’m sure Wilson and Newby will be posting all those clips on YouTube any day now. I’m waiting with knife and fork.
-
Posted by Relative Risk at 21:36 0 comments Links to this post
Labels: Film
07 May 2009
Excellent question.
PalMD provides a thoughtful answer over at The White Coat Underground.
I recently had a pleasant, brief email exchange with Kris Newby, the producer of the latest medical advocacy pic, Under Our Skin. There's been a number of similar movies lately, mostly about quacky cancer therapies. This one is apparently much better made, and follows the controversy regarding "chronic" Lyme disease.
I'd heard an interview about the movie on Diane Rehm, and was rather unnerved by it. It sounded like a typical I-drank-the-Kool-Aid-now-I'm-gonna-make-a-movie kind of thing. Still, I haven't written about it, because I haven't seen the movie. That's going to change. Kris is being kind enough to send me a copy, despite my warning that I'm very likely to pan it.
Well, if PalMD doesn't like UOS, I've got a creepy little DVD given to me by a colleague called, "The Children of Dr. Jones." It seems to have been made in 1999 when Jones--one of the hero Lyme docs protrayed in the above mentioned Lyme film--was only 70-years-old. Today at 80, Jones is still treating kids with one hand while fending of the state medical board with the other. I'd love to know what some others think of his bedside manner and his diagnostic skills.
-
Posted by Relative Risk at 14:26 0 comments Links to this post
Labels: Film, Lyme disease
03 May 2009
I guess it’s not the end of Under Our Skin, the propaganda film from the Lyme disease activist community. The letter below just came out asking for….wait for it…money. Yes, money. The one thing Lyme patients and Lyme Literate Docs love more than antibiotics or third-party payments: money. Hey, even propagandists have to eat.
Dear Friends,
As you may know, it has been quite a busy and eventful year for UNDER OUR SKIN, with accolades from audiences and press worldwide. We've received four "Best Documentary" awards, an "Audience Favorite" award, and top honors from medical and film organizations. We've also been successful in getting the film screened at no charge in over 500 communities nationwide. And with national spots on network TV and radio, our film has brought unprecedented attention to the issue of Lyme disease. But we have more work to do.
Yes, I’ll bet it wow’ed them at the Franklin Public Library and the Okanagan International Film Festival, and it must have been a shoe-in for that Chris Award in Columbus, Ohio. (Who’s Chris?) I’m guessing the adoring medical organizations mentioned above must have been ILADS—the self-help group of Lyme quacks, some of who starred in the film.
But apparently there’s still more to do. More work? I thought the film was done. Or was this just phase one of some larger scheme…or conspiracy?
We are now gearing up for the next phase--the Uncover the Epidemic national outreach campaign, which we're launching in conjunction with our theatrical and educational DVD release this summer.
Tell me that doesn’t sound like propaganda. Or a public service commercial underwritten by Mobil Oil and Philip Morris. “Uncover the Epidemic.” Curious phrase. Historically, most epidemics tend to uncover themselves. In fact, they tend to bludgeon us, demanding attention. Note the current swine flu “epidemic.”
In addition to getting the film before mainstream audiences, we'll be partnering with national organizations interested in issues such as environmental awareness, affordable healthcare and insurance reform. We will also be working to get the film into classrooms, medical schools and libraries, so that the truth about Lyme disease (and the system that has kept it hidden) can no longer be ignored.
Why are people always trying to get their personal beliefs and products into classrooms? Kids have enough trouble with the three RRR’s; they don’t need the distraction of everyone else’s personal theories, beliefs, opinions, and conspiracies. But I guess you have to get ‘em when they’re young so schools are everyone’s favorite target for thought control and misinformation.
Unfortunately, we don't have Hollywood studios backing our efforts, so we are financing this work ourselves. Revenue from DVDs sold to date is all going back into outreach and distribution. But it is not enough. We need to raise $100,000 in the next two and half months to continue our vital outreach work, including our awareness tour, advertising, PR and promotional materials.
Never before has the Lyme community had a media tool like UNDER OUR SKIN. It is imperative we don't pass up this opportunity to create lasting mainstream awareness and change. [my emphasis]
[snip]
Producer/Director
UNDER OUR SKIN
Open Eye Pictures
So, according to Mr. Wilson’s above comments, his movie was never intended to be a factual documentary. [Maybe he should return any awards he collected in the documentary category.] It was intended to persuade, to promote, and to change. It’s propaganda.
Change what, I wonder? Hopefully, he’s not talking about science and medicine. They’re changing all the time; and not with any help from him and his merry band of cultist activists, deluded patients, and quack doctors.
I think the change he’s plotting is the same change the activists have been working on for years. That is, to replace evidence-based medicine with anecdote and subjectivity; to ignore years of independent, peer-reviewed research and millions of dollars spent on clinical trials in order to supplant it all with personal belief.
And what is that personal belief? It is that Lyme disease is a “chronic” or persistent infection that can only be detected by “Lyme Literate” doctors and one or two magic diagnostic labs, and which can only be held in check by a constant supply of expensive antibiotics paid for by increasing the costs of everyone else’s medical insurance.
It’s the infectious disease equivalent of Creationism. Belief over evidence. Dogma over science. It’s change we can all do without.
-
Posted by Relative Risk at 20:52 0 comments Links to this post
Labels: Film, Lyme disease, Politics
23 April 2009
I have mentioned the availability of a couple of very informative videos about Lyme disease and the prevention of tick-borne infections.
I don’t want to start a film review blog here, but I should, as a matter of public health and public education, mention a horrible little piece of poisonous propaganda called, Under Our Skin. It’s supposed to be a documentary about Lyme disease. Viewers won’t learn anything useful about the infection, but they will probably come away with a sense of having been punched in the face with a fistful of disinformation designed to confuse and infuriate. (Actually, this piece of disease porn reminds me of the 1980’s efforts of the KGB’s Department A (Dezinformatsiya) to blame the U.S. for the emerging AIDS epidemic. Stories were written about alleged U.S. experiments and then planted in Third-World newspapers by leftist reporters. The planted stories were picked up by other news organizations and quickly traveled around the world. It was a clever and effective propaganda campaign. Good thing the Internet wasn’t around in those days.)
I think I’ve seen most of the film in short clips and trailers posted on various websites. (I can only take it small doses anyway.) Copies of it circulate among Lyme disease activists and it seems to be playing in every church basement and library meeting room where such activists are able to gather. The film focuses on a number of people who are clearly ill; so much so that it’s hard to believe they only have Lyme disease. They are the “victims.” Also featured in the film are various private practice physicians—known as “Lyme Literate MDs” for their alleged knowledge of the infection, and their lack of formal training in infectious diseases or clinical research. They are the heroes.
And what’s a good tale without a villain or two? The villains are academic physicians, public health officials and insurance companies: a supposed cabal working to deny the existence of “chronic” Lyme disease and a national epidemic of Lyme disease.
(A quick note: most researchers and public health people I know tend to exaggerate the numbers, impact, costs, dangers, etc. of any disease they’re interested in. The bigger and badder the disease, the more money they can get for research. It’s rule #1 of any public health campaign or grant proposal. So I’ve never been able to figure out why Lyme activists think there’s a campaign to play down Lyme disease. From the point of view of professional self-interest, it doesn’t make any sense.)
The film has been around long enough that an occasional review has been published. In 2008, for example, Julian Upton, writing in Lancet Infectious Diseases, used words like “partisan,” “manipulative,” and “conspiracy” to describe it. Someone who knows something about making documentaries told me the film seemed to have been made “not to educate but to create and induce fear, panic and distrust.” If so, it succeeded. But I guess that’s the point of good propaganda.
Andy Wilson is the director and was inspired to make this film after his sister contracted Lyme disease. A few years ago, he responded to some criticism in an email: …we very much want to tell the truth about the Lyme disease controversy, and are looking for people…who have a breadth of experience and expertise to contribute to the dialogue.
…the so-called LLMDs have been much more eager to speak to us and, perhaps, this is the reason our research appears biased. Frankly, we've often heard from the "Lyme establishment" that if the opposing camp is equally represented, they do not want to participate. So you must understand our predicament: We are forced to represent one perspective over another.
“Tell the truth about the Lyme disease controversy.” Curious phrasing. I could understand wanting to tell about the Lyme disease controversy, but inserting the word “truth” suggests that something is wrong, something is hidden. Maybe there’s a conspiracy. It’s always tricky to go looking for “truth” because the quest often turns into a crusade. Moreover, how do you know the truth when you find it unless you already think you know what it is?
As for the LLMDs being eager to appear in the film, I’m sure that’s true. It’s free PR for them and an opportunity to attract more patients. It’s a chance to clean up an image that has been regularly tarnished by federal granting agencies, state and federal prosecutors, medical licensing boards, and malpractice lawyers. Who would want to share the limelight with such people? It would only boost their credibility….or reduce one’s own.
“We are forced to represent one perspective over another,” claims the director. So whoever shows up, that becomes the chosen perspective? That becomes the “truth”? Again, I don’t know anything about film and documentaries, but that attitude isn’t likely to produce anything more honest or useful than a heavy-handed commercial. Aren’t there any disinterested experts or science writers to interview? Any infectious disease researchers who don’t see patients, but who might have insights into the epidemiology and pathogenesis of Lyme disease? Apparently, not.
Wilson wrote in an email, We are not interested in agitprop journalism. (Agitprop, by the way, is from the Russian, Agitatsiónno-propagandístskiĭ otdél, or Agitation Propaganda Section of the Central Committee.) Yet Wilson and his producer Kris Newby (herself a self-described “Lyme victim”) certainly sound like they’re out to agitate and propagandize.
A few years ago, a reporter I know wrote, …that documentary filmmaker andy wilson (under our skin, the lyme=aids movie) wants to do a segment on the [news] story, and has one of his producers investigating me by calling colleagues of mine to see if i have "ties to the health insurance industry". it's sort of sad but also creepy.
Similarly, a researcher at Johns Hopkins wrote to a colleague about the same producer, noting, Open Eye Productions contacted Hopkins about your stated affiliation with Hopkins. Another Newby query asked of a reporter, Just out of curiosity, did you get your original source material for your Lyme article from ____? If you did, you really should talk to me.
Newby also wrote in an email, I'm a science writer who's been doing the investigative work for an upcoming Lyme disease documentary…. I have a lot of dirt on the IDSA guidelines authors, if you're interested. I'd love to include it all in our film….” “…I'll give you the 30 minute overview of the greed, politics, etc, with Lyme. I've been working on this for 2 years, and I'd hate for all that research to go to waste.
It’s clear from the film clips that it did not go to waste.
If the creators of Under Our Skin were interested in dirt, greed and politics they need not have looked any farther than a mirror or the company they keep.
Dirt, greed and politics can be found among the advocacy groups and LLMDs who supported this film and advertise its merits on their websites. It can be found among the LLMDs who sit on Lyme advisory boards and troll for patients at advocacy meetings. It can be found among the LLMDs who pump their patients full of i.v. antibiotics and supplements, but are mum about their ties to intravenous infusion and nutritional supplement companies. It can be found among the Lyme advocates and LLMDs who direct confused patients to one or two diagnostic labs specializing in Lyme tests. It can be found among the owners of specialty Lyme labs who sit on Lyme advocacy boards and regularly attend Lyme gatherings to hawk their products. It can be found among the activists who set up defense funds and organize rallies to protect LLMDs from licensing boards, malpractice attorneys and injured patients. It can be found among the activists who write death threats and make anonymous calls to the directors and deans of their imagined enemies. It can be found among the cash-only, bootstrapping LLMDs who justify their clinical practices by citing the clinical guidelines they wrote, and then justifying the guidelines by citing the anecdotal practices that inspired the guidelines.
Sometimes I think this sci-fi movie was commissioned by the activists and their LLMDs as yet another vehicle for making money and spreading hysteria about a common bacterial infection.
As an example, here are a couple of online posts from film’s producer, Kris Newby: Can we please ask you [the activists] to post again asking Dr. Oz and Oprah to do a show on UNDER OUR SKIN, the documentary that exposes the truth about Lyme disease?? And again, Letters to both local and national PBS office would definitely help get UNDER OUR SKIN on the air, so go for it.
Yeah, maybe they can sell a few more DVDs.
Under Our Skin is such an assault on evidence-based medicine it should be classified as a snuff film. Rational and the well-informed viewers are not likely to be deceived by this blatant propaganda piece, but I was surprised to find a number of online Lyme patients who didn’t think much of it either.
One regular poster to a Lyme disease forum wrote, I came away with the impression that Shapiro and Wormser [two infectious disease specialists] were really just used to make, setup, the opposing point. The IDSA starring as the bad guys. Looking at the trailer...there is a statement that Shapiro makes about the "bottom line" that appears to be out-of-context in the film...making it appear as though he is saying something else, entirely.
Another online regular wrote a detailed critique of the pseudo-documentary.
Unfortunately, Under Our Skin falls terribly short in executing its goal in informing the public fully….
The producers’ choices in the doctors they follow does not help the “Lyme-literate” cause. While the inclusion of the Jemsek and Jones hearings was a necessary move, the choice to include Dr. Klinghardt, who openly advertises the use of hormones and bee venom to treat Lyme disease as a top physician in the field is, in my humble opinion, a questionable choice. It is also unfortunate that the filmmakers choose to approach the Jemsek and Jones trials in such a way as to overshadow the numerous mis-diagnoses made by Jemsek, for example. The actual reason why Jemsek had his license suspended in North Carolina is all but ignored, the producers instead focusing on political implications. Similarly, the focus of Jones’ trial is not that he treated patients he had never met, let alone examined, as well as other charges listed on the official order, only that he has helped thousands of patients and therefore deserves some type of immunity for his actions….
I feel that Mandy’s story [a woman portrayed in the film] only ends up making Lyme patients appear to be the malingerers and hysterics that far too many doctors already are too quick to brand us, and I fear that, as genuinely sick as Mandy may have been, the footage of her only renders illegitimate all that could have been redeeming aspects to the film.
On the other hand, Charles Ray Jones, a well-known LLMD in Connecticut and one of the stars of the film, claimed in a letter to his defense fund donors, Validation of my practice has been supported by Andy Wilson in his highly acclaimed documentary film, “Under Our Skin".... Right. Some guy with a video camera thinks you’re Albert Schweitzer while a committee of your physician peers thinks you need to be watched at all times.
I guess it’s true, you can’t convince the committed. Or as someone so elegantly put it, “believers simply look for more excuses, even resorting to a ‘your science is inadequate to test my magic’ argument.”
So there we are with the Lyme controversy. Fact vs. film. Science vs. magic. And if the politicians get any more involved, magic is likely to win….in the short-term….just ask the Pope.
-
Posted by Relative Risk at 17:36 1 comments Links to this post
Labels: Film, Jones, Lyme disease