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Archive for May, 2014 Nails it again! “Irate Lyme Disease Patients Storm “Dinner Party” at IDSA Headquarters”

Friday, 30 May 2014 09:44
By Jessica Bernstein, Truthout | Report

Original Article Here

Ten years ago Josh Cutler never could have imagined that he’d be out leading hundreds of Lyme patients in protest at the headquarters of the Infectious Diseases Society of America (IDSA) in Arlington, Virginia. But when Josh was 25, he watched a friend die of Lyme disease. Then at age 26, he became sick too. Now 34, he’s married with two young kids and has been disabled and unable to work for the last five years. He wanted to live to see his children grow up, so he knew he had to do something to create change.
What is the IDSA you may ask? It’s a private medical association made up of physicians, scientists and other healthcare professionals who specialize in infectious disease. According to their website, they’re dedicated to improving the health of individuals, communities and society by promoting excellence in patient care, education, research, public health and prevention. Most importantly (for our purpose in this discussion), they are responsible for creating the diagnostic and treatment guidelines for Lyme disease that are primarily used by all the big guns – the Centers for Disease Control (CDC), the National Institute of Health (NIH), physicians and insurance companies.
This distinguished organization started back in 1967 from the humble beginnings of two little dinner groups. Their original goal was to cultivate the growing knowledge of infectious diseases within their small membership, who were the most promising researchers in their field. Yet, somewhere along the way, something went very awry within this new society that has since grown to over 9,000 members.
Flash to May 22 and 23, 2014 when hundreds of irate Lyme patients led by Josh are protesting in front of the IDSA headquarters, in a desperate attempt to change IDSA policies that prevent them from receiving care. In the tradition of ACT UP, the AIDS activist movement that sprouted up back in the 1980s when patients were dropping like flies and nobody cared, protesters took to the streets outside the IDSA building, demanding changes in diagnostic criteria and treatment protocols.
Sick patients descended on the place that became the office for the original dinner partiers, and conducted die-ins with protesters laying their bodies on the ground in order to block the entrance. Many of the protesters were in wheelchairs or stood with IVs. A truck circled the building throughout the day bearing signs that read, “Tell the IDSA to Stop Rejecting Science!” and “Patients with Chronic Lyme Disease Are Dying: Fight for a Cure!” IDSA mail servers, fax machines, phone lines and social media pages were bombarded with angry pleas.
Quite a turn of events from those quiet little dinners in the early days. But what led to all of this? As we’ve silently developed a massive worldwide Lyme epidemic, where untold millions are suffering and unable to get treatment because of outdated IDSA guidelines, these IDSA members evidently think they’re still at the dinner party – “as the band plays on.” Has the IDSA turned into a giant medical LinkedIn group that lets its members’ patients suffer so they can say they’re part of a prestigious organization and have something to put on their resume the next time they’re applying for a job or trying to secure a well-paid speaking position? That’s what the hundreds of protesters will tell you, saying that the IDSA does not in any way represent the needs of Lyme patients, the majority of whom are too sick to get out of bed to join in on the dinner party.
Much of the strife between IDSA Lyme researchers and patients centers around the notion of a chronic infection. The IDSA contends that the Lyme bacterial infection is always eradicated after a simple two to four week course of antibiotics. Debilitated patients like Josh, who have been crippled by the disease, have been fighting for decades for recognition that the infection can persist. A growing body of research supports their claims. Seventy-seven peer-reviewed studies from 1977 to 2012 show that the Lyme infection can persist despite recommended treatment. And yet, there doesn’t seem to be one researcher in this IDSA group of 9,000 who has the backbone to stand up for Lyme patients, not one who has the intellectual curiosity to insist that the organization seriously consider, without prior bias, the notion of a chronic infection.
Meanwhile, rates of Lyme are skyrocketing. In 2013, the CDC announced that rather than 30,000 new US cases annually, there are likely 300,000. Other Lyme experts, like the New York Times best-selling author Richard Horowitz, MD, point to factors (misdiagnosed cases, inaccurate testing and regions not included in the assessment) that indicate the actual rates are likely in the millions. Researchers featured in a recent film about the worldwide Lyme epidemic, Lyme Disease: A Silent Epidemic, discuss how 25 percent of some African tribes have Lyme disease, which is often misdiagnosed as malaria.
Josh asserts that the diagnostic criteria and treatment for Lyme are outdated because they’re not based on current science. The National Guidelines Clearinghouse (NGC), which is part of the US Department of Health and Human Services, lists guidelines for most diseases. IDSA Lyme guidelines have not been revised since 2006, despite NGC rules requiring that guidelines be revised every five years.
Critical research has emerged in the last eight years that more strongly suggests the possibility of chronic infection. U.C. Davis researcher Stephen Barthold, DVM, PhD, has developed a body of work showing persistence of the Lyme infection in mice, and Tulane University researcher Monica Embers, PhD, conducted the first non-human primate study in 2012 on the Lyme infection and found persistence in rhesus monkeys. Studies like this beg the question, why aren’t the IDSA Lyme researchers, who are supposedly dedicated to promoting excellence in patient care, research and public health, jumping on the bandwagon by pursuing more of this kind of research themselves?
Sen. Richard Blumenthal of Connecticut, ground zero for the Lyme epidemic, begged this question himself when he was Connecticut attorney general during an antitrust investigation of the IDSA guideline committee in which their Lyme disease guidelines came under review. Over the course of his 17-month investigation, he found undisclosed conflicts of interest among several of the most powerful IDSA panelists. In addition, he uncovered that the panel chairman, Gary Wormser, MD, who had a known bias against the existence of chronic Lyme, had handpicked a panel of like-minded people who ignored or minimized consideration of chronic Lyme while also blocking appointment of scientists with divergent views.
Blumenthal concluded:
The IDSA’s 2006 Lyme disease guideline panel undercut its credibility by allowing individuals with financial interest – in drug companies, Lyme disease diagnostic tests, patents, and consulting arrangements with insurance companies – to exclude divergent medical evidence and opinion . . . . Medical societies that publish such guidelines have a legal and moral duty to use exacting safeguards and scientific standards.
Same old story. Well-meaning dinner party turns corporate. But clearly not all 9,000 IDSA members are experts on Lyme disease and they leave policy decisions to those in the organization who are. Nonetheless, as members of this group, it’s time that they all look up from the dinner table and notice the untold numbers of suffering Lyme patients and remember their commitment to helping people. And then they need to at least make some strong recommendations to the Lyme committee such as: the inclusion of one or two research experts from the Lyme disease community on their panel; the addition of some younger researchers to the committee who can see this issue with fresh eyes; and a focus on finding the answer to the question, “If this large group of sick patients does not have chronic Lyme, what exactly do they have?”
Perhaps it’s time for IDSA members to go back to their original noble goal of improving the health of individuals, so that patients like Josh can go back to caring for their families.

You can read the original article here:


Lyme Disease Protest: Mayday 2014 A Step In The Right Direction

From Arklatexlyme Staff/ May 26, 2014.

On May 22nd and 23rd, I attended the fourth annual Mayday Lyme Disease Awareness protest.  This year, we directed our voice toward the Infectious Disease Society of America. For two days we gathered outside the IDSA headquarters in Arlington, VA to chant, hold up our signs, and voice our opinion concerning their stance on chronic Lyme Disease, the current treatment guidelines, and their constant denial of the principles of evidence based medicine.


Why We Protest Against the IDSA

IDSA’s Guidelines for Lyme Disease:

  • Ignore the principles of evidence based medicine.
  • Discourage physicians from providing treatment to severely ill patients.
  • Dismiss extensive evidence for chronic Lyme disease.
  • Misrepresent expert opinion as science.

The Result:

  • Thousands of patients are misdiagnosed and denied treatment.
  • Thousands remain sick and suffer terribly.
  • Chronically ill patients must pay out of pocket for medically necessary treatment.
  • Thousands of people are devastated financially.
  • Doctors who treat Lyme patients are subject to medical board investigations.


Mayday Project organizer and Lyme sufferer, Josh Cutler, wants to make the message perfectly clear so that there is no misunderstanding about what we want from the IDSA.  From his personal Facebook page, Josh explains:

Just so everyone knows, the IDSA will respond with nonsense. We aren’t protesting for the use of long term abx [antibiotic] use

Folks please know we are not fighting for them to give us the OK to use long term abx. While this works for some, it’s not a cure. 

What we want is for them to revise the guidelines, accept persistent Lyme as a diagnoses. This will open the door for people to do research into the chronic form of the disease and hopefully produce a cure.    This is what we ultimately want, not the use of long term abx. While that might help some, that’s not our demand.

It’s a complete revision of the Lyme disease guidelines to accept and acknowledge chronic Lyme.    

Keep this in mind as we continue to storm them. Please keep writing them. Their only response to the news cast was that long term abx are dangerous and an outdated John Hopkins University studied showed that “Chronic Lyme disease” doesn’t exist. 

The protest on the IDSA has only begun. Science will prevail over this nonsense.”

During the protest, IDSA associates refused to talk to the press or make an appearance before our group.  After much negotiation, they allowed Josh Cutler and Allison Hoffmann-Caruana to enter the building .  As our representatives presented the three IDSA agents with documents and a brief narrative of our plight, they said, “We hear you.  We are listening”.  These were the only words spoken by IDSA stewards.

Though the response “we hear you…we are listening” appears to project a sense of acceptance and compassion, we need to remain guarded from allowing generic statements to give us a false sense of hope for a mission that has many miles to go.

Activist Grace Pitschi warns that “organizations and companies who we have protested against often pay lip service by finally saying ” we are listening” or “we are interested in your concerns”.  And then they do nothing as soon as the activists let their guard down. Being an activist means staying vigilent and insistent… and having professional help get solid results.” 

Grace goes on to tell us, from her posting on the Mayday Project Facebook page, “We want to know WHEN the IDSA is going to sit down with us? Where? And who from our group will attend to make sure the meeting is serious and that change is made in writing?  The IDSA is hoping that we will all declare this a victory and go away. We wont! We are stronger and wiser than that.”

We are headed in the right direction, but we need to be consistent by emailing, calling, faxing and notifying the press that we want action.  I am going to give you some very important information obtained from the Mayday Project website .   Please help us all by doing what you can from home.  We must not stop!   See the information, below, on how you can help by contacting these organizations directly.

Here is how you can help:

We need people to post on the IDSA’s Facebook page, sharing the document “Scientific Proof of Chronic Lyme Disease” provided on our website.

 Download “Scientific Proof of Chronic Lyme Disease” here:

 IDSA’s Facebook Page:


Hammer the IDSA twitter page, using the hash tag  #revisetheguidelines

We also want people to call (703) 299-0200 demanding a change to the outdated guidelines. Call them from all over the country and world. When you call, use every single option on the menu, talking to everyone you can. Keep calling them!

 Fax “Scientific Proof of Chronic Lyme Disease” to the IDSA at (703)-299-0204.

 Use their website contact page and flood as many of your stories of Chronic Lyme as you can. Let them know how you have followed their protocol for antibiotic therapy and are still sick and bedridden.

 Here is a list of people we will call and ask them to review our evidence and respond accordingly. If they tell you that they can’t help you, ask them to put you in contact with someone that can. Do not take no for an answer!

 Vice President of Communications:

Diana Olson

(703) 299-0201

 Communications and Public Affairs Officer:

Jennifer Ford

(703) 299-0412

 Sky Opilia  (312) 558-1770




Lyme Victims from Around US to Gather at IDSA Headquarters and Demand Changes to Guidelines for Lyme

Thursday, 15 May 2014 12:57
By Staff, The MayDay Project | Press Release
Article at

WASHINGTON, DC—On Thursday, May 22, 2014, Lyme disease victims from around the U.S. will unite at the Infectious Diseases Society of America (IDSA) headquarters for the 2014 Mayday Project protest. They will demand IDSA update its controversial guidelines for Lyme disease to reflect the current state of science and that IDSA acknowledge the evidence for a chronic form of Lyme disease that is resistant to antibiotic treatment.

Mayday coordinator Josh Cutler has been fighting late stage neurological Lyme disease for eight years. This condition affects the brain, the central nervous system, and the autonomic nervous system that regulates blood pressure and other vital functions. Cutler was rushed to the emergency room on a dozen occasions and at one point was confined to a wheelchair. According to the IDSA, Cutler cannot possibly still have Lyme because he was treated according to their guideline’s recommendations.
Cutler says, “IDSA’s guidelines for Lyme disease contribute to misdiagnosis and denial of treatment for thousands of people like me. We are uniting to demand that IDSA stop its misrepresentation of science, end its conflicts of interest, and fix its guidelines for Lyme. IDSA needs to put our health first.”
Cutler is just one of many thousands of patients in similar or worse situations. A study by published in the March 2014 issue of PeerJ, an open-access medical journal, found that Lyme patients reported a poorer quality of life than patients with other chronic diseases, including congestive heart failure, diabetes, multiple sclerosis, and arthritis. Fair or poor health was reported by 73% of patients with chronic Lyme disease compared to 16% of the general population.
Lorraine Johnson, an attorney/advocate for issues related to the medico-legal and ethical aspects of Lyme disease, has studied the financial impact of Lyme extensively. “I don’t have to tell patients that they are suffering,” says Johnson. “The fact is that they are forced to see too many physicians before they are finally diagnosed. By the time they get diagnosed, they are profoundly ill and their illness is much more difficult to treat. Eighty-four percent are not diagnosed within 4 months; 65% of those with chronic Lyme have had to cut back on or quit work or school. Moreover, 25% have been on disability and over 75% of these have been on disability for more than a year. Beyond the personal suffering, the financial burden this imposes on individuals, their families, and, ultimately, society is enormous. One thing that is certain is that ignoring this problem is costly and grows more costly every day that we fail to intervene.”
Controversy about Lyme disease has divided the medical community and led to the creation of the International Lyme and Associated Diseases Society (ILADS), which has published its own guidelines for Lyme. ILADS and IDSA guidelines disagree about virtually everything, including testing, diagnosis, treatment, and the very definition of Lyme disease.
IDSA believes Lyme 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.
ILADS believes Lyme disease is a serious national medical problem of epidemic proportion that needs to be treated aggressively and often requires long-term treatment beyond the limits set by IDSA. ILADS guidelines recognize a chronic form of Lyme disease and recommend that the “duration of therapy be guided by clinical response, rather than by an arbitrary treatment course.”
A growing number of physicians, legislators, and legal experts are speaking out against the IDSA guidelines for Lyme.
According to Johnson, who serves as the CEO of, “Doctors rely on guidelines to determine how best to treat their patients, and insurance companies use them to decide what treatments to pay for. The IDSA guidelines for Lyme define the illness so narrowly that many people otherwise determined to have Lyme disease are denied access to medical care. Frequently, those given treatment are limited to a “standard course” of antibiotics (often 2–3 weeks) even when they remain ill. Furthermore, insurance companies often won’t pay for anything beyond what’s stipulated in the guidelines.”
In 2009, the Association of American Physicians and Surgeons wrote an open letter to the IDSA sharply criticizing its guidelines for Lyme. Below are excerpts.
AAPS objects to the overly rigid IDSA Lyme Guidelines that were published in 2006. . . . These Guidelines should be revised to recognize that the physician must retain full flexibility in the diagnosis and treatment of Lyme disease. Medical societies do not practice medicine; physicians do. The mandate for specific laboratory confirmation is particularly objectionable, as testing for Lyme disease is notoriously insensitive and unreliable. Patients who do not meet this criterion would often be denied treatment that could mitigate severe chronic disability. In some cases, long-term treatment is required. Physicians must be able to exercise their professional judgment concerning the best treatment for each individual patient, without restraint by one-size-fits-all Guidelines, which amount to mandates and prohibitions.
In November 2006, Connecticut Attorney General Richard Blumenthal, now a U.S. Senator, launched an investigation of IDSA based on allegations of abuses of monopoly power and exclusionary conduct in the development of their guidelines, in violation of antitrust law.
In a May 2008 press release Blumenthal said, “My office uncovered undisclosed financial interests held by several of the most powerful IDSA panelists. The IDSA’s guideline panel improperly ignored or minimized consideration of alternative medical opinion and evidence regarding chronic Lyme disease, potentially raising serious questions about whether the recommendations reflected all relevant science.”
Blumenthal’s findings include the following:
* IDSA failed to conduct a conflicts of interest review for any of the panelists prior to their appointment to the 2006 Lyme disease guideline panel.
* IDSA failed to follow its own procedures for appointing the 2006 panel chairman and members, enabling the chairman, who held a bias regarding the existence of chronic Lyme, to handpick a likeminded panel without scrutiny by or formal approval of the IDSA’s oversight committee.
* IDSA’s 2000 and 2006 Lyme disease panels refused to accept or meaningfully consider information regarding the existence of chronic Lyme disease, once removing a panelist from the 2000 panel who dissented from the group’s position on chronic Lyme disease to achieve “consensus.”
* IDSA blocked appointment of scientists and physicians with divergent views on chronic Lyme who sought to serve on the 2006 guidelines panel by informing them that the panel was fully staffed, even though it was later expanded.
* IDSA violated its own conflicts of interest policy.
IDSA reached a consent agreement with Blumenthal’s office calling for creation of a review panel to thoroughly scrutinize the 2006 guidelines and update or revise them. In 2009, the guidelines were reviewed and updated, but no significant changes were made, and Blumenthal charged the IDSA with violating the agreement.
According to Blumenthal, the IDSA used an “improper voting procedure, based on a process of its own design, which blatantly violates the Settlement Agreement and undermines the integrity of the voting process.”
In addition to inflexibility regarding its guidelines, IDSA has consistently opposed patient-centered legislation at the State and Federal levels. At their 2004 annual meeting, the IDSA passed a resolution to oppose patient legislative initiatives. At IDSA’s 2006 annual meeting, “Defeat Patient Sponsored Legislation” was a top agenda item.
Mayday supporter Bruce Fries is concerned about the impact of the Lyme wars on patients like him. “This is more than a power struggle and academic dispute,” he says. “People are suffering because a small group of influential physicians and researchers are too stubborn and self-important to do what’s best for patients. The medical community needs to fix its badly broken system of dealing with emerging chronic illnesses like Lyme.”
Fries contracted Lyme disease, along with several co-infections, in late 2007. He visited nine doctors before he was finally diagnosed and treated. “My doctor has helped hundreds of patients get better,” says Fries. “He follows the ILADS guidelines and treats people individually. If a treatment doesn’t work, he tries another approach or combination therapy. Unfortunately, when treatment goes beyond the IDSA guidelines, doctors like him risk becoming the focus of medical board investigations. Good doctors who help patients regain their health are targeted, while doctors who follow the IDSA guidelines and deny treatment to patients who are later proven to have Lyme face little or no repercussions.”
Call to Action
The Mayday Project provides Lyme victims with a forum to publicly speak out and demand changes. Mayday coordinator Cutler calls on Lyme victims and others touched by Lyme to stand together and make a difference.
“We expect hundreds to attend. They are suffering and angry about the handling of the Lyme epidemic. They want access to treatment. They want better tests. They want insurance coverage that doesn’t end when treatment fails. They want doctors to stop telling them it’s all in their heads. And most fundamentally, they want the IDSA to place the health of patients ahead of professional biases and self-interest.”
Event Details
The 2014 Mayday Project protest will take place on the public sidewalks surrounding IDSA headquarters at 1300 Wilson Boulevard, Arlington, Virginia, which is across the street from the Hyatt Arlington and one block from the Rosslyn Metro station.
The protest will begin 7:00 a.m. Thursday, May 22, and continue through 5:00 p.m. Friday, May 23.
A welcome reception and coordination meeting will be held Wednesday, May 21, from 7:00 to 10:00 p.m. at the Holiday Inn at Rosslyn Key Bridge.
A press conference is scheduled for May 22 at 11:00 a.m. to give the media an opportunity to hear firsthand from patients, activists, and experts about the devastating impact of the disease, and the impact of the IDSA guidelines on patient health.
Mayday Project coordinators are working closely with the Arlington County Police to ensure that protesters comply with local laws and that the Department assigns an appropriate number of officers to the event.
Groups of activists will alternate shifts so the protest will have plenty of coverage throughout the day without wearing people out. Mayday’s own protest “marshals” will be stationed throughout the area to provide guidance and facilitate communication.
For event details and questions visit