Commenting on IDSA Lyme guidelines, part 2
The IDSA is allowing the public to comment on its process for revising the Lyme disease guidelines. Here are some suggestions for things to say.
If you haven’t yet, we recommend you read Part 1 of this blog before proceeding.
The following are suggested comments for submission to the IDSA. You may copy and paste some or all of them. Or, use them as a springboard for your own remarks. Remember, the IDSA wants you to give page and line numbers that refer to the Lyme Disease Project Plan.
Guideline panel constitution and authors: Page 2, lines 1-50
Conflicts of interest: Pages 8-9, lines 116-126
The IDSA’s Lyme guidelines panel is not balanced. It does not represent a broad spectrum of views on the topic of Lyme disease. The manner in which it was constituted is not transparent. We haven’t been told who chose the panelists or why they were selected.
The Institute of Medicine requires that the panel include “representatives from key affected groups.” Yet the IDSA has excluded two groups who are profoundly affected by the guidelines: chronic Lyme patients and the physicians who treat them. These guidelines are used to deny care to Lyme patients, many of whom are too sick to work and otherwise suffer serious quality-of-life impairments. Some state medical boards also use the guidelines as a legal standard to attack Lyme-treating physicians.
The Institute of Medicine says guideline panels should include two patient representatives, one specifically from a patient advocacy organization. The IDSA has chosen only one person to represent the interests of Lyme patients. She has never had Lyme disease and has no experience or knowledge of the issues affecting Lyme patients. She does not “represent” people with Lyme disease. Patient representatives on the panel should be known to, trusted by, and legitimately regarded by the Lyme community as someone who can effectively represent their interests. Selecting someone who knows nothing about the disease is a form of tokenism that leaves patients unrepresented.
The panel includes many researchers who were under investigation by the Connecticut Attorney General for antitrust violations in connection with the 2006 Lyme guidelines. They can hardly be expected to be impartial. Many have taken strong stands in publications on the very questions the panel will be deciding. They hold extremely biased viewpoints. Furthermore, some panel members who are involved with developing diagnostic tests have substantial financial conflicts of interest. This is highly inappropriate, since the panel will make many decisions regarding lab testing for Lyme disease.
The exclusion of even moderate researchers assures that only one side of the debate will be presented. Panel members who might be impartial will not have the benefit of a robust discussion of the issues. The biased nature of this panel and its exclusion of those deeply affected by the guidelines, including patients with chronic Lyme disease and the physicians who treat them, will taint and undermine everything the panel does—from which questions are discussed, how they are framed, how evidence is evaluated, and what recommendations are made.
The panel needs to be reconstituted to achieve more balance. It must include patients with chronic Lyme disease, physicians who treat them, and researchers representing the spectrum of views on this disease. Unless this is done, the entire process lacks integrity.
Commenting on the IDSA Lyme guidelines, part 3. Take our survey.
LymeDisease.org has prepared a survey to establish patients’ views regarding diagnosis and treatment of Lyme disease. (The IDSA’s guidelines process is supposed to take into account outcomes that are important to patients. But there’s no mechanism for determining what those preferences are.)
We will compile and submit these results to the IDSA. We will also publicize them on our website, forward them to journalists, and share them with appropriate lawmakers.
Please include lyme doctors and lyme patients in your review. There are so many of us with easy to get and hard to treat tick infections. We need help! and insurance coverage and protection for our doctors.
All the thousands of Lyme disease patients, myself included, need you to revise your guidelines. Please include Lyme patients and doctors on your panel. We are the true sufferers and need dour doctors and insurance companies to look at this issue with new glasses.
Insurance needs to cover this costly disease! LLMD’s are all out of network and charge so much! That needs to be regulated and Reg. Doctors need to learn more about LYME/Co Infections. PLEASE change your guidelines to help us! I pay for Insurance , so why isn’t the treatments and clinics! Clinics want 10 grand a week! Out of pocket is just as bad as being infected and needing proper care. Start saving lives.Change things.
This is what I put, copying and pasting your comments. Hope this is OK. Thanks for giving an explanation and comments. Perhaps you could make it a bit easier by inserting the second line of page numbers (as I’ve done here, if it’s correct).
Also, it would help if each link opened in a new page so we can have all the tabs open and read the project plan, see the comment form and your instructions etc. Having brain fog, I found this very complicated, I’m sure IDSA did that on purpose, a typical tactic of those who work for insurance companies.
Thanks.
Guideline panel constitution and authors: Page 2, lines 1-50
The Institute of Medicine requires that the panel include “representatives from key affected groups.” Yet the IDSA has excluded two groups who are profoundly affected by the guidelines: chronic Lyme patients and the physicians who treat them. These guidelines are used to deny care to Lyme patients, many of whom are too sick to work and otherwise suffer serious quality-of-life impairments. Some state medical boards also use the guidelines as a legal standard to attack Lyme-treating physicians.
The Institute of Medicine says guideline panels should include two patient representatives, one specifically from a patient advocacy organization. The IDSA has chosen only one person to represent the interests of Lyme patients. She has never had Lyme disease and has no experience or knowledge of the issues affecting Lyme patients. She does not “represent” people with Lyme disease. Patient representatives on the panel should be known to, trusted by, and legitimately regarded by the Lyme community as someone who can effectively represent their interests. Selecting someone who knows nothing about the disease is a form of tokenism that leaves patients unrepresented.
Conflicts of interest: Pages 8-9, lines 116-126
The panel includes many researchers who were under investigation by the Connecticut Attorney General for antitrust violations in connection with the 2006 Lyme guidelines. They can hardly be expected to be impartial. Many have taken strong stands in publications on the very questions the panel will be deciding. They hold extremely biased viewpoints. Furthermore, some panel members who are involved with developing diagnostic tests have substantial financial conflicts of interest. This is highly inappropriate, since the panel will make many decisions regarding lab testing for Lyme disease.
The exclusion of even moderate researchers assures that only one side of the debate will be presented. Panel members who might be impartial will not have the benefit of a robust discussion of the issues. The biased nature of this panel and its exclusion of those deeply affected by the guidelines, including patients with chronic Lyme disease and the physicians who treat them, will taint and undermine everything the panel does—from which questions are discussed, how they are framed, how evidence is evaluated, and what recommendations are made.
The panel needs to be reconstituted to achieve more balance. It must include patients with chronic Lyme disease, physicians who treat them, and researchers representing the spectrum of views on this disease. Unless this is done, the entire process lacks integrity.
Please provide better education to internal medicine doctors and make insurance cover the expensive treatment of chronic Lyme and it’s co-infections. Completely remove the IDSA or allow the scientists and Lyme specialists to rewrite it. Also the mental health community needs to be educated about systemic bacterial infections because I know from experience that they are extremely dangerous to those with Lyme like infections because they have a confirmation bias to diagnose them as psychiatric illnesses. I suffered for years and almost died several times while the entire medical community was trying to lock me up in mental hospitals. Now I am disabled and have a tube in my heart because of all the damage the infections did to my nervous system and organs. A serious problem I encountered was that no one would even test me for Lyme and its co-infections. They say thing like there is no such thing as chronic Lyme. They are not only wrong but are also dangerous. Almost every doctor I talked to kept talking about chronic Lyme not existing yet I had never been diagnosed and treated. They seemed to not be able to comprehend that if you don’t treat Lyme at all then it won’t just go away by itself. I was not treated for about ten years. By the time I found a doctor to test me, I had about ten different bacteria in my blood and many had gotten to my nervous system. My neurologist thought I was developing ALS. I was dying. For doctors to claim that I didn’t have a life threatening systemic bacterial infectious because they heard chronic Lyme didn’t exist is insane. I was never treated and almost died from all the bacteria. It ruined my life. I was the top scientist in my class as well as a professional athlete and I had served for 5 years in the USMC. Now I can’t even take care of myself because of the incompetence of the medical community.
In the words of the man who discovered the causative agent of Lyme Disease, Dr. Burgdorfer:
“The controversy in Lyme disease research is a shameful affair. And I say that because the whole thing is politically tainted. Money goes to people who have, for the past 30 years, produced the same thing—nothing.”
The time has come for change. We, as sufferers of chronic, persistent Lyme infections need your help! We need to be treated with long term antibiotic treatment, covered by insurance plans, allowed to be diagnoses clinically, so that we do not continue to end up debilitated and disabled. We are not suffering “the aches and pains of daily living,” as was written in the former IDSA guidelines. To say that is to deny an entire body of literature that says otherwise. It is offensive and DANGEROUS.
Please allow our LLMD’s to do their job. For those doctor’s who don’t want to treat us, fine, but lay off those who are doing their jobs!
This epidemic is far and wide the most common infectious disease. It hides from antibiotics and the immune system, gets into our tissues and our brains. We are suffering and being denied the right to get the treatment that we desperately need.
Please stand with us-listen to us-allow us a voice and a choice.
Thank you.
Read my daughter’s obituary and come visit her grave.
I am conserned about the IDSA guidelines. I live in NH and have suffered from Lyme and, co-infections for five years now. I am in a wheelchair full time and, I am on long-term care from the state as a direct result of Lyme. I know that many who make the IDSA guidelines to treatment do not believe in chronic lyme however, it has been mentioned that “post Lyme treatment syndrome” can be a complication of not treating lyme early enough or, it just happens. In any event, weather or not chronic lyme exists, I can tell you that we can agree on the word “complications.” What measures are their for people like me who have to rely on SSDI and, long-term nursing home level care because of “complications”? In addition, I am bedridden unable to now work and, care for myself, so I am hoping the IDSA can consider including a revised version of guidelines that is inclusive of those of us like myself who are willing to take the risks of treating with long-term anti-biotics via oral route (when I can keep those down) and, IV therapy. I am also conserned as the main stream medical community refusses to even work with a Lyme disease patient due to fear. So, if I have a non-Lyme related illness I have a really hard time finding a doctor as the current guidelines are too vauge and, many doctors don’t know what to do with me as I have Lyme so they will refuse me care for baisic things. Sometimes I am not medically stable and, I will be treated in hostile ways by doctors out of fear and ignorance. Before Lyme, I never had this experience but after the positive test result, the way the doctors treated me became abusive and neglectful…even unethical. I believe if we could work together to revise the treatment guidelines the government could save more money in the long run. This is because, things could be clearer about testing, and treatments could exceed 21days if someone is as ill as I am. Perhaps, we could look at people who claim that the long-term treatments work by conducting studies and, determining if in fact their is a scientific baisis for these claims. Perhaps we could come up with a more accurate way to test for Lyme and the co-infections. I know my doctor treated me very late because she was confused about how to test properly and, futher how to read the test. It wasn’t until I lost 10 pounds in two weeks, and couldn’t walk without a walker and was bedridden that she considered upon my BEGGING to test me with the western blot. Please note I could be a more productive member of society and cost the government less money if I could get better from this. Thank-you for your time.