Open Eye Pictures has recently learned that the Infectious Diseases Society of America (IDSA) has been trying to stop the television broadcast of its award-winning documentary on Lyme disease, UNDER OUR SKIN. Working behind the scenes, IDSA officers and members have been contacting the Public Broadcasting Service (PBS), the National Educational Telecommunications Association (NETA), and local PBS stations, calling our film “dangerous for viewers” and full of “conspiracies.”
The Public Broadcasting Service (PBS) was created in 1967 to “provide a voice for groups in the community that may otherwise be unheard,” and serve as “a forum for controversy and debate” by broadcasting programs that “help us see America whole, in all its diversity.”
We are heartened that no PBS affiliate station has folded under the pressure. UNDER OUR SKIN is the first televised documentary dedicated to educating the public about the plight of Lyme disease patients, who have been abandoned by the medical establishment, in part, because of the IDSA’s flawed Lyme guidelines development process.
While the primary focus of UNDER OUR SKIN is to inform viewers about Lyme disease through the eyes of patients, it also includes interviews with several authors of the IDSA Lyme disease treatment guidelines. These authors were briefed by the IDSA vice president of communications before the filming began, and we believe these interviews accurately represent the IDSA viewpoint on Lyme disease.
UNDER OUR SKIN also shows the unfolding of the investigation into the IDSA Lyme disease guidelines by former Attorney General Richard Blumenthal of Connecticut. His final investigative report found that there was:
• Significant conflicts of interest among the original IDSA guidelines authors,
• Suppression of scientific evidence by authors, and,
• Exclusion of panel members with opposing viewpoints.
The IDSA’s suppression of dissenting views continues. This time the target is UNDER OUR SKIN. (More examples of IDSA censorship are listed at the end of this article.)
Recently, the importance of transparency and open dialogue in medical guidelines development were underscored in a report by the Institute of Medicine (IOM), “Clinical Practice Guidelines We Can Trust.” In this mandate for guidelines reform, the IDSA Lyme guidelines were called out as an example of a process gone awry:
“This case highlights the need for standardization and transparency in all aspects of systemic data collection and review, committee administration, and guideline development, so that questions about these issues do not detract from the science. [Guideline developers]… must be aware of the many, varied observers who will consider their development processes, particularly when their recommendations are likely to be controversial.”
And in a recent study in Archives of Internal Medicine, researchers found that out of 4,200 IDSA guideline recommendations, more than half were based on no more than expert opinion and anecdote, not hard evidence, reinforcing points made in our film. (See references below.)
So, as investigative news organizations and documentary film producers — with the help of the Physicians Sunshine Act — begin to shine the light on endemic commercial influences on “evidence-based medicine,” it’s a wake up call to the medical establishment to clean up their own act before attacking outside organizations dedicated to protecting the public.
In other words, don’t shoot the messenger.
____________________________________
To read more about past IDSA efforts to censor dissenting opinions:
Poses, R. (2006) “The Conflicted Defending the Conflicted: Infectious Disease Specialists’ Attack on the LA Times Goes Awry.”
Henderson CW, DeNoon, DJ. (1997) “Strange Bedfellows Damage CDC and NIH Credibility” AIDSWEEKLY Plus. Feb 3 1997.
Oransky, I. “Transparency needed in drug researchers’ finances.” Boston Globe. Oct. 7, 2006.
To read more about the flawed IDSA guidelines development process:
Johnson, L. and R. B. Stricker (2010). “The Infectious Diseases Society of America Lyme guidelines: a cautionary tale about the development of clinical practice guidelines.” Philos Ethics Humanit Med 5: 9.
IOM. (2011) “Clinical Practice Guidelines We Can Trust.” Washington D.C. National Academies Press.
Lee, D. H. and O. Vielemeyer (2011). “Analysis of Overall Level of Evidence Behind Infectious Diseases Society of America Practice Guidelines.” Arch Intern Med 171(1): 18-22.
Frederik Joelving, Medical “best practice” often no more than opinion”,
To download a detailed history of the IDSA investigation, click here.
To read the Attorney General’s press release on the IDSA guidelines investigation, click here.
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- It definitely stretches the
1 day 6 min ago - I was constantly hunting for
2 days 2 hours ago - how do help the patient with
1 week 3 hours ago - There are really two
1 week 3 days ago - I saw the film when it first
2 weeks 21 hours ago - From the ancient time lyme is
2 weeks 2 days ago - I believe that Dr. Jones is
3 weeks 4 hours ago - I sympathize with your
3 weeks 2 days ago - Hi Kelly,I just read your
3 weeks 3 days ago - For the last few years, this
4 weeks 3 days ago
It’s a great pleasure reading
It’s a great pleasure reading that you posted here. radyo dinle
Thanks for sharing. i really
Thanks for sharing. i really appreciate it that you shared with us such a informative post...
Just buy the video and offer
Just buy the video and offer public screenings- that's what I do. I also print materials to hand out and offer a referral list. People know what they are experiencing and don't come to be convinced, they come because something finally reflects their experiences. I have found that expecting a grand scale change is impossible, but connecting with like minded people day by day is the way to go.
Great idea. I just saw this
Great idea. I just saw this
The film was very much what I
Just beginning to read up on
Just beginning to read up on LD, and the controversies associated with 'chronic Lyme Disease'. According to the Lyme Disease Foundation, Inc. website, http://www.lyme.org/trtcontrov.html:
(1) " Among the most compelling published evidence of chronic infection despite prolonged antibiotic therapy is the case study "Seronegative Chronic Relapsing Neuroborreliosis," (Eur Neurol 1995; 355: 113-17). It details a patient whose serum was consistently negative for free antibodies for Bb infection, but had laboratory evidence of active infection in the cerebrospinal fluid (CSF). The patient, a previously healthy 58-year-old woman, received four courses of intense antibiotic therapy: 3-weeks of intravenous ceftriaxone followed by 8-weeks of ceftriaxone; 2 weeks of intravenous ceftriaxone followed by 19 weeks of doxycycline; 3-weeks intravenous treatment followed by additional treatment with doxycycline; and 2 weeks of intravenous ceftriaxone.
" Evidence of active infection was found each time after intense prolonged antibiotic therapy was administered. Relapse occurred soon after treatment was stopped and Jarish-Herxheimer episodes were experienced each time treatment was initiated. (J-H reactions are symptoms that include fever and nausea and are believed to be cause by the body's initial reaction to toxins from dead Bb.) When the patient was given clarithromycin for 22 months, no new symptoms or deficits occurred.
" The report concludes the case is "an unusual case of seronegative Lyme disease" in a patient with "chronic relapsing Bb infection." Renowned neuro-Lyme expert and IDSA committee member Patricia Coyle, MD, SUNY Stony-Brook School of Medicine, co-authored the article.
(2) " New York State Office of Professional Medical Conduct's trial against East Hampton doctor Joeseph Burrascano, Jr., on charges of overdiagnosis/treatment of LD and its revocation of Long Neck Lyme specialist Perry Orens, MD, last year exemplifies the "chilling" impact Liegner and others believe the protocol will have on Lyme docs who aggressively treat late-stage LD. After leaving Burrascano's case open for over six years, OPMC informed him just weeks after the protocol was first released in late August that they will proceed with their case against him. The opening date of his trial took place October 26. LDF chair Karen Vanderhoof-Forschner anticipates the IDSA protocol will be among the primary evidence used against Burrascano.
" Though Burrascano cannot reveal the specific charges against him, media reports state the charges include overdiagnosis and overtreatment of LD. The case represents a pivotal chapter in the Lyme disease controversy, as Burrascano is perhaps the most vocal, respected and influential physician who recognizes and aggressively treats LD. With his Lyme disease diagnosis and treatment protocol published in Conn's Current Therapy (Rakel, 1997), many Lyme-literate doctors rely on his guidelines to diagnose and treat LD.
" Should Burrascano lose his case, the ever-shrinking list of doctors willing to aggressively treat patients who remain symptomatic after "conventional" short-term therapy because of unscientific protocols such as the IDSA's is sure to become even shorter.
" And the implications of that go far beyond chilling."
What about those people who
This film is free on hulu
This film is free on hulu right now. Just a heads up. It is required for anyone in my family to see how hard life is for my wife and what has made her better. You can say what you want about this film but the treatment in this film (antibiotics, supplements) saved my wifes life. Something is working.
Although it may be available
Although it may be available for 'free' somewhere, if you want someone to do the heavy lifting of creating an expose, you should be willing to buy the DVD so that the folks who actually did the research and risked the ire of the powerful, can be in some small way be compensated for their time and effort.
Do you think exposes grow on trees? What are the documentary producers supposed to eat -air?
Gladly pay for this information or don't piss 'n moan in the future when no one wants to research into why you and your family have been made ill, or ripped off, or lied to by the .05% who have the megafunds to own this country.
I just saw part of this movie
I just saw part of this movie on my PBS station, and by far this was the most irresponsible piece of garbage I have ever seen on PBS.
Shame on you, PBS
If "part of the film" is
If "part of the film" is "garbage", then it shouldn't trouble you in the least. Shame on YOU for commenting on something you've neither watched nor experienced. I hope you experience chronic neuropsychiatric Lyme and live in the snare you help to set for others.
If "part of the film" is
If "part of the film" is "garbage", then it shouldn't trouble you in the least. Shame on YOU for commenting on something you've neither watched nor experienced. I hope you experience chronic neuropsychiatric Lyme and live in the snare you help to set for others.
I've been sick with Lyme
I've been sick with Lyme disease for 15 years. The standard methods of treatment as recommended by the pharma backed IDSA did not work when I originally contracted Lyme, diagnosed two different times by bulls eye rashes in a three year period. Western Blot identifies anti bodies, but not all active infections. It is an ineffective method of diagnosis. The chronic, acute symptoms of Lyme disease that I now have, headaches, arthritic joints, short term memory loss, fatigue, muscle pain, developed over time, and were dismissed by regular doctors who perscribed useless pain killers and anti inflamatories. "Sick" of the lamestream medical industry, I turned to a Lyme specialist and now a mix of IV antibiotics are starting to do the real work that previous, lame and ineffecient methods as recommended by IDSA, allowed me to become far more sick than I needed to be. It is irresponsible of medical practitioners to dismiss this serious disease as a mental illness, it is not irresponsible for PBS to share our stories. Every day I sit with other Lyme victims and we share our struggles and stories. They sound exactly like those in this film. I have never felt so validated and my struggles and wise decisions so well confirmed.
I am a landscape designer, an avid gardener, a martial artist, a runner and athlete and I cannot do what I love anymore without pain and exhaustion. I have a large amount of foul epithets for people like you. But you are obviously suffering from some Lyme yourself that has attacked the cognitive parts of your brain and limited your ability to think. So I recommend some antibiotics to help you too.
This film FINALLY shows
"I just saw part of this
"I just saw part of this movie......." That sums up the quality of your opinion for me. Watch the whole thing first. Post a comment that provides a reason for or against the documentary. Your opinion is garbage.
After seeing UOS I realized I
After seeing UOS I realized I was watching what had happened to my mother over the last ten years. I didn't even know if she was bitten by a tick before she was sick. I called her and asked her and she told me she was bitten six months before she "crashed". There was a red ring around the bite. Bells went off. After researching on my own I was able to find a doctor that would listen. The doctor prescribed antibiotics and in ten days my mother felt like herself again, something that hadn't happened in ten years. The solution is simple. Medical care is a HUMAN RIGHT. It is not something that is bought and sold. Who in their right mind thought mixing profit and health care was a good idea? The medical profession should be sought after by people who truely want to help people, not get rich. I would rather have a doctor that was motivated by compassion than money, cures rather than treatments. This also requires personal responsibility from people. If you choose to live an unhealthy lifestyle, then accept the consequenses of your actions. Genetic and infectious disease cures should be fiercely sought after and readily available. People that drink until they black out everyday should pay for a new liver.
Your comments were worth
Your comments were worth reading until the end which has no bearing on the issue. Most people who drink and need a new liver don't get one unless they pay for it. They aren't put on the donor list so you need not worry about that.
In regards to personal responsibility, if you are an avid health nut hiker and go out in the woods and pick up a tick, shouldn't you accept the consequences of your actions? Don't be so quick to judge. Use your anger to help make some changes not blame other sick people.
IOWA, I'm proud to say aired
BettyG, Iowa lyme activist
You certainly deserve a round
Greed and power have
Greed and power have destroyed millions of lives. Louis Pasteur was ridiculed and slandered by the medical elite of his time for having the outrageous idea that doctors could spread death between patients because they just wiped the blood of one patient on their coat and proceeded to operating on the next patient without washing their hands.He was considered a quack by his peers for blaming disease on tiny microorganisms that could not be seen by the naked eye. His outlandish quackery has saved millions of lives. I thank god for people like Pasteur and the heroic doctors in this documentary that risked everything by standing their ground against the greedy and powerful groups that tried to silence them.
My brother has been
My brother has been co-diagnosed with Lyme Disease and ALS. he has the same symptoms as the patiences in this documentary. Now I'm wondering why he isn't receiving the same aggressive treatment with antibiotics as others. Instead he is on severe pain medication that would cripple any normal man. Where do "We" turn for help?
KTradionetwork.comwww.lymeboo
KTradionetwork.com
www.lymebook.com
Chad, What state are you in?
Chad,
What state are you in? I know of a handfull of Lyme Literate docs in California, but maybe if you post where you are at someone knows a doctor in your state
I was not impressed by this
I was not impressed by this film in the least. It seems more like a gigantic rant against "the man", with no mention of what specific parts of the IDSA guidelines are in error. I would very much like to see any of the self-anointed "lyme disease experts" appearing in this film to take the time to explain first what exactly the definition of "chronic lyme disease" is, and secondary to explain what specific portions of the IDSA guidelines they believe are in error and present research findings that contradict the research cited in the guidelines. I suspect this will not occur any time in the near future. It is perhaps far more shocking and appealing to portray this organization as some type of SPECTRE-esque secret society that is plotting diabolical schemes to inflict misery upon the world than to look logically at the matter.
For all those interested, I am pleased to note that the IDSA guidelines are freely available to the public for review:
http://cid.oxfordjournals.org/content/43/9/1089.full
By the way, for what possible reason would "Big Pharma" want to suppress the use of long-term antibiotic therapy? Pharmaceutical companies produce intravenous antibiotics, and it would certainly not be in their best financial interests to try and stop doctors from prescribing their products.
The film was not made to
The film was not made to "impress" you. People are being healed by those who are not impressed (or healed) by the IDSA guidelines- which is not open for debate by sumg, sanctimonious Gladys Kravitz busy bodies like you, Butt out, and let honest physicians and their patients work together- they do very nicely without your grotesque and unwanted "opinion".
Oh, we are all quite aware of
Oh, we are all quite aware of the IDSA recommendations. ANyone of us who has ever gone to a lamestream doctor who smiled down at our "psychosomatic" agony and administered the useless Westernblot test and sent us home with a script for anti inflammatories knows very well the IDSA's USELESS guidelines that are causing misery and even death.
I lost a friend to ALS. My husband is suffering unexplained symptoms that no specialist can understand. But he refuses to go to my Lyme specialist saying the Western blot said he didn't have Lyme disease. This film makes me wonder now.
WHy WOULD big pharma, and insurance companies be so resistant to recognize this pernicious epidemic?
Hmmmm. Let's see. Oh! I know! The cure is simple, although long term, kind of like curing Hepatitis, or any other long term bacterial infectious disease. EXPENSIVE!
That treatment could get costly for a For-Profit insurance company that would then have to pay for the millions of us chronically Lyme ridden patients that IDSA doctors have malpracticed into chronic disability. Imagine, a proclamation that Chronic Lyme disease may be the cause of MS, ALS symptoms, chronic fatigue, fibromialgia, arthritis and more? And easily cured with a year or three of antibiotics?
Can you imagine the can of worms of law suits that would open up?
The cost to insurance companies?
The loss to big pharma who want to market Lyme Vaccines? The pet vaccine didn't work...There's BIG money in vaccines...
Best to deny the disease exists in a chronic form, let the sick people pay for their treatments if they can afford it...IF they can figure out what it is... IF they can find a doctor who will treat them appropriately.... And just to be on the safe side scare off any legitimate doctors who are actually healing people with this aggressive treatment that's working because we can't have any evidence of a cure! Just sue their pants of and strip them of their license to practice. WHo cares how many are crippled, disabled or die.
Disgusting. We need a national health care system, NOT a for-profit system.
I am sorry to hear that you
I am sorry to hear that you were not impressed by this, agent of the IDSA. However, thanks for sharing the link - it is so generous of you and your organization to publish this guideline avaliable for all of us to view.
Please, troll elsewhere. Your propganda is not welcome here. Perhaps if you had a shread of humanity left in you, review the film again and consider the diesase from the patients' point of view.
I am sorry to hear that you
I am sorry to hear that you were not impressed by this, agent of the IDSA. However, thanks for sharing the link - it is so generous of you and your organization to publish this guideline avaliable for all of us to view.
Please, troll elsewhere. Your propganda is not welcome here. Perhaps if you had a shread of humanity left in you, review the film again and consider the diesase from the patients' point of view.
To reply to your question
To reply to your question about "why would pharmaceutical companies want to suppress the use of long-term antibiotic therapy" the answer lies in the cronic problems that were mentioned in the movie such as MS, ALS, Lupis, and so on. Doctors will tell you that they don't know what causes these "auto immune diseases" and that there is no cure. If lyme is the cause and you are able to give a cure the cost to the pharmaceutical companies would be in the multiple billions every year.
I have lyme as well as CNSV, my wife Crones and will be tested this week for lyme. As this question, how much more money can pharmaceutical companies make on a lifetime of treatment for these two illness and their complication verses simple antibiotics?
By the way, I am not afraid to put my name with my thoughts. I am tired of dealing with doctors over the last 10 years and this movie is a reflection of my personal problems. How about you?
I wonder what scientifically
The guideline has citations
The guideline has citations to the research cited.
I'm all for attacking/questioning guidelines. This sort of thing happens all the time. It's how newer and better guidelines get made. The issue is that the impetus for such change must be scientifically valid experiments, not personal ancedotes. The day when the "persistant lyme disease" movement can establish a good definition of what exactly "peristant lyme disease" is, and confirm using placebo-controlled randomized clinical trials with proper methodology that intensive antibiotic therapy is beneficial, is the day when the IDSA guidelines, or any guidelines for that matter, will change.
There really isn't anything to "defend against", becuase the film never quite explained what was wrong, only that the IDSA is evil and that Big Pharma, Big Insurance, Big Government, and Big (insert slogan here) who want to keep the little guy down. Intermixed with these complaints were personal ancedotes about how intensive antibiotic therapy managed to cure people suffering from a wide variety of non-specific symptoms.
By the way, thanks for the legal advice. When you or any other attorney win your first verdict against a practitioner on this basis please let us know.
Well, the film explained that
Well, the film explained that 'Lyme-illiterate' doctors are influenced by the IDSA, which are in turn influenced by conflicts of interest involving health insurance companies. The IDSA has also exercised its ability to "to handpick a likeminded panel without scrutiny by or formal approval of the IDSA's oversight committee" (http://www.ct.gov/ag/cwp/view.asp?a=2795&q=414284). This is all shown in the results of the Connecticut Attorney General's investigation mentioned at the end; the link above will take you to the appropriate web page on the ct.gov site.
You may be wondering why pharmaceutical companies would pay the IDSA to discourage prolonged antibiotic treatment. Antibiotic producers would not, because they would lose profit. Maybe (and I say "maybe" without accusation) antidepressant manufacturers would, because they are prescribed by doctors who suspect that patients' complaints are caused by depression. Antidepressants like MAOIs are also typically prescribed to anyone in constant pain whose body consumes anesthetics too quickly to be fully effective. Maybe this is not all explained in the movie, but the movie is meant to act as a starting point for gaining 'Lyme literacy'.
Why has an attorney other than CT's Att. Gen. Richard Blumenthal probably never won a debate like this against a practitioner (never mind a whole group of practitioners)? Because practitioners have the money for the best defense attorneys!
Oh, and Mr. Lawyer, before him? You can say "you're welcome" now. It's only polite.
"The issue is that the
No evidence for persistent
No evidence for persistent infection?
Start here: http://www.ilads.org/lyme_disease/written_testimony/15%20Liegner-Chronic%20Persistent%20Infection.pdf
The history of medicine is rife with conflict between old guard and new thinking. There is nothing new in the controversies between IDSA and ILADS. The extremes of both positions are troubling. What we need are research teams composed of open-minded folks from both "camps."
One of the reasons I like reading Dr. Liegner's work is because he is a physicianly man; a critical thinker and a clinician-scientist of the archetypal sort.
One advances clinical medicine in three ways: the classic, laboratory and basic research; placebo-controlled, double-blinded treatment study; and careful, thoughtful, detailed clinical, bedside observations----well-done anectodal reports.
Our minds need to be like semi-permeable membranes: open enough to let good ideas in, and selective enough to keep the garbage out. And I might add, the wisdom to know the difference.
I have looked at the ILADS
I have looked at the ILADS guidelines, and again there appeared to be a heavy reliance on ancedotal evidence, although to their credit there were no complaints against "Big (insert slogan here)" anywhere in their work. If ILADS were to run a good clinical trial comparing placebo to antibiotics in patients suffering from these symptoms I would certainly be interested in it.
Clearly, you are clueless -
Clearly, you are clueless - even after watching the film. If you ever get Lyme disease (chances are high, considering it's an epidemic), you'll stop promoting the IDSA guidlines ....
And once you're bed-ridden and your life is more or less over because doctors couldn't or didn't want to help you, you might remember this movie ....
Big words for an everyday
Big words for an everyday person, sounds more like Shapiro and Wormer from the movie to me...If you want to more about it then GO READ, or better yet go find a tick to attatch to yourself, wait until you are really sick, and then try and find help. Live the life of a Lyme sufferer then you will have first hand knowledge of what the movie was about.
Why they must censor this
Why they must censor this kind of television broadcast? I think UNDER OUR SKIN was very useful for viewers because it informs us a lot of education. Also, it share us patient experience that might be beneficial to the others.
Actually, I disappointed of this case. But, let us hope for better effect. God Bless you all.
If you are trying to get the
Netflix for me, too.
Netflix for me, too.
Its' all basically the same.
The IDSA believes that lyme
desperate, desperate
how do these infectious
how do these infectious disease doctors sleep at night? It's only a matter of time until one of them, or they see someone they love get this awful disease
the infectious disease society is such a joke. get real jobs.
1) My darling husband just
I'd like to say I'm shocked
Oregon Public Broadcasting
This is unbelievable.
I'd rather see any
I'd rather see any disagreement settled with a response rather than attempting to silence discussion.