The Patient Centered Care Advocacy Group (PCC Group) says it has documented a deliberate misinformation campaign by Infectious Diseases Society of America (IDSA) panelists who are tasked with updating IDSA’s guidelines for the diagnosis and treatment of Lyme disease.
The PCC Group cites the article IDSA Lyme Guidelines Panelists Engage in Coordinated Propaganda Campaign, by Bruce Fries of the Mayday Project Lyme patient advocacy group. The article claims to provide detailed evidence about an organized propaganda campaign by the IDSA Ad Hoc International Lyme Disease Group. According to an analysis of CDC emails obtained via a FOIA request by science writer Kris Newby, the Ad Hoc group has been covertly setting government policy on Lyme disease and misinforming the public about the disease for the past decade.
Fries noted, “Rather than advancing scientific knowledge and making information available that could help patients restore their health, IDSA panelists suppress good science and withhold relevant information from patients, colleagues, and the public.”
Since they were first published in 2000, the IDSA guidelines for Lyme disease have been the subject of intense controversy, including an antitrust investigation by the state of Connecticut and hundreds of protests.
Debate focuses on the existence of chronic Lyme disease, also referred to as “persistent infection,” meaning some Lyme bacteria tolerate and survive antibiotic treatment.
The view enforced by IDSA is that Lyme disease is easy to diagnose and simple to treat with a limited course of antibiotics. According to the IDSA guidelines, chronic Lyme does not exist and long-term antibiotic treatment is not warranted. Many physicians adhere to the IDSA guidelines and insurance companies use the guidelines to set coverage limits.
The International Lyme and Associated Diseases Society (ILADS) maintains Lyme disease is a serious national medical problem of epidemic proportion. The ILADS guidelines recognize chronic Lyme and recommend that the “duration of therapy be guided by clinical response, rather than by an arbitrary treatment course.”
Hundreds of peer-reviewed articles now support the ILADS position. These articles document many ways that Lyme bacteria can evade the immune system and survive antibiotic treatment.
According to Fries, “Hundreds of thousands of chronically ill patients are harmed by the dissemination of propaganda and suppression of relevant science, which, regardless of intent, amounts to scientific fraud.”
Patients and advocates will make their voices heard during a multi-day protest and candlelight vigil October 9 – 10 at IDSA’s IDWeek conference in San Diego, California
An 8-page comprehensive overview of Lyme disease and other tick-borne diseases based on current scientifically-validated peer-reviewed published information can be found at http://www.jimapco.com/lyme/learnthefacts.pdf.
Bear in mind that the Lyme Action Network is one of the “advocacy” organizations that promotes the notion that chronic Lyme disease is a real disease that is more prevalent than generally accepted by medical science. A more balanced view is expressed here:
http://www.newyorker.com/magazine/2013/07/01/the-lyme-wars
Whether or not chronic Lyme disease really exists, it clearly is being greatly overdiagnosed, often by quack practitioners (including some M.D.’s).
How do you suggest that children (with continued symptoms recurring arthritis etc, after antibiotic treatment) get treated? Do you suggest MUS (medically unexplained symptoms) as their new illness? I find it remarkable that institutionalized stupidity can spread to the general population and infect them with mass ignorance and cruel indifference. These people need to be treated until they are cured. People are not in wheelchairs for the fun of it. The IDSA has shown a total disregard for human suffering. Shapiro (Who works as an “expert witness” for insurance companies to turn down claims and disbar doctors also promotes MUS as a diagnosis) should be locked up. Medically unexplained symptoms AS A DIAGNOSIS. And he is one of the guys who sets up the guidelines for treatment! God help us all!
Actually, it’s the other way around, Mark. Lyme disease and chronic lyme disease is what’s been greatly under diagnosed. You need to get your facts from more reliable sources than the New Yorker. It was a good article, but definitely not research.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2876246/
http://www.ilads.org/ilads_news/2015/list-of-700-articles-citing-chronic-infection-associated-with-tick-borne-disease-compiled-by-dr-robert-bransfield/
There’s a reason why the best evidence you can muster is a paper in a pay-to-play Egyptian medical journal (Interdisciplinary Perspectives on Infectious Diseases). You don’t see papers supporting the putative “chronic Lyme disease” diagnosis in tier-1 journals like New England Journal of Medicine, BMJ, or Lancet because the data to support it doesn’t meet the standard of scientific evidence.
It’s like Multiple Chemical Sensitivity, Morgellon’s, or the alleged vaccine-autism link — you’ve got a cult of people encouraged by quack practitioners and fringe MD’s to believe in this as the cause of their ills. And they will continue to suffer as long as they cling to this misdiagnosis. Unlike most other medical cults, there really is such a thing as Lyme disease, and antibiotic therapy really does fail in rare cases. There’s also some number of people who are being re-infected by ticks after successful therapy. And in addition to these situations, Lyme can cause long-lasting or even permanent neurological injury which persists even after the infection is eradicated, which may lead some people to believe they are still infected.
The best model is probably the hysteria over wheat gluten. There really is such a thing as coeliac disease (extreme gluten intolerance), and those people definitely need to avoid it. But there is now a vastly larger number of people who believe wheat gluten is the cause of their real or imagined symptoms because they were given that diagnosis by a chiropractor or naturopath, read a book promoting wheat gluten hysteria, or watched a Dr. Oz show. Wheat gluten sensitivity has become a fad diagnosis in “alternative” medicine, and chronic Lyme disease is following the same trajectory.
There is a chronic lyme disease and I’m a good example of a person who have it. Unfortunately everyone is focused on 1 bacteria as a causative agent. I was diagnosed serologically with 5 different bacteria that is borrelia, anaplasma, bartonella hensale and quintana, mycoplasma pneumoniae and babesia microti. My brain was affected, my heart was affected as well and still is, but I’m improving after a couple of months antibiotics. Actually in the beginning I went the IDSA way that is 30 days of doxycycline 200mg/day in 2 doses. Actually after this I felt even worse and of course this addressed only the borrelia and what about babesia and others ? I’m wondering about you denialists how do you believe in life ? Can science prove how the life is happening ? If not – then why do you live ? Fuck science in this case.
Mark, how is it “clearly…being greatly overdiagnosed”? With it taking people an average of two years and ten doctors to finally be correctly diagnosed with Lyme disease, I don’t see how that’s possible. I take it you’re not sick with chronic Lyme and don’t know anyone who is.
Mark back to the research. We can no longer hide the medically publicated studies of persistent infection. Try looking at recent information provided by John Hopkins or the 1- 5 persister cell analogy. This nonesense MUST stop people are suffering in unfathomable ways because of the notion that this infection cannot become chronic.
Mark back to the research. We can no longer hide the medically publicated studies of persistent infection. Try looking at recent information provided by John Hopkins or the 1- 5 persister cell analogy. This nonesense MUST stop people are suffering in unfathomable ways because of the notion that this infection cannot ome chronic. Would google the links for you but believe you are quite capable
Lyme disease has been misclassified as a simple nuisance disease; easily treated with a one-size-fits-all treatment guideline when in fact Lyme is the 21 Century plague. Over 30,000 supporters from twenty countries have signed the petition calling for a congressional investigation into the mishandling of Lyme disease. Please see the following petition update:
https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/13301800
Actually, it’s the other way around, Mark Thorson. Lyme disease and chronic lyme disease are greatly under diagnosed. You need to get your facts from better sources than the New Yorker. While it was a decent article it’s definitely not research.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2876246/
http://www.ilads.org/ilads_news/2015/list-of-700-articles-citing-chronic-infection-associated-with-tick-borne-disease-compiled-by-dr-robert-bransfield/
Mark,
After you read Carl’s reference, perhaps you would comment on the points made in that document and also comment on the decades long and many tens of millions of dollar effort expended on
Pasteur Merieux Connaught’s Lyme
vaccine
And
Baxter’s Lyme vaccine
We’re these mega million dollar vaccines simply ambitions to immunize against a form of “hysteria”?
And could you comment on further research investigations ongoing to thwart this epidemic?
The only reference to a paper in a scientific journal at Carl’s link is the one to Clinical Infectious Diseases. They conducted an annual follow-up study for 11-20 years on 100 people that had definitely been confirmed to have Lyme disease. What did they find?
The mean summary scores of physical and mental health were similar to the general population.
That’s right. These people weren’t any different than anybody else.
Why is there no vaccine? Lyme disease is caused by a spirochete. Vaccines against spirochetes are hard. Medical science has been dealing with syphilis (another spirochete disease) for much longer, and we still don’t have an effective vaccine for it.
There has been an editorial commentary published on the article in Clinical Infectious Diseases that Carl cited in his petition. You can read it here:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4480264/
What about those of us who had Lyme symptoms for decades, were never treated because it didn’t pop on the standard test, and now suffer from debilitating late-stage Lyme disease? How can anyone deny the damage done by having the disease for so long?
The answers are out there being discovered by the patients and doctors in the front line putting their necks on the line sharing their knowledge and helping each other to get others well. Also referred to as quackery/hysteria. Common sense prevails with the IDSA. Tick bite? Well You have lyme until day 30 of your doxycycline. Day 31 you have fibromyalgia, if your antibodies against lyme still grow I still don’t have Lyme Its now has to be a false positive because doxycycline absolutely cures lyme. constant inflammation and infections… No not lyme your stressed or depressed. Your partner and children now have swollen joints and positive tests. No definitely not lyme! It’s not transmitted in any way what so ever except via ticks. You are all suffering from Cfs and need psychological help.
shit will have to hit the fan eventually….
There’s some very interesting research going on at Stanford and Columbia now. I’ve talked to one of the more high profile researchers and I believe the controversy will be settled in favor of persistent infection within a year or two at most (not that there isn’t already significant science in favor of this conclusion, as this advocacy group is pointing out).
The shit has already hit the fan for hundreds of thousands of people. The question is when does the wake up call come? I used to be cynical about this, but I have reason to believe that the paradigm shift will happen very soon now. And just for the record, I have a science background and I’m about as non-nutty as you could imagine. I had to drag myself through other possibilities for years before I was willing to even try out what seemed to be a nutty theory at the time… and I’m amazed to say that what these Lyme specialists are seeing in their patients is true in my experience. Science hasn’t caught up to practice (see asthma, stomach ulcers, spinal infections, etc for the many, many failings of medical science to come to obvious conclusions in a timely fashion), but I’m absolutely certain that it will.
It’s all corrupt bollocks