LYMEPOLICYWONK: Deadline extended; you can still comment on IDSA
In March, the Infectious Diseases Society of America provided a 30-day window for the public to comment on its plan to revise the Lyme disease guidelines. The deadline was April 9. However, the IDSA has just extended the time to file comments. If you have not yet done so, you now have until April 24th.
LymeDisease.org and the national Lyme Disease Association filed comments on behalf of 67 Lyme advocacy groups. Here are our conclusions:
The current Plan fails to provide the type of process integrity essential to creating trustworthy guidelines. We believe that the Plan to should be revised to achieve the following goals.
- The IDSA/AAN/ACR panels should be balanced and represent scientists and physicians from both opposing Lyme paradigms.
- Robust patient representation (2 or more) is important and should not be token. Patients should be empowered and prepared patients who represent the population affected by Lyme disease.
- Consensus should not be obtained by excluding people who disagree.
- Controversies and disagreement should be acknowledged. Minority viewpoints should be published with the guidelines.
- A public docket of all comments should be maintained and be publicly posted on the IDSA website.
- The IDSA/AAN/ACR guidelines should be reconciled with the guidelines of ILADS.
- All value judgments by the panel, particularly those pertaining to the patient’s role in risk/benefit assessment, should be carefully delineated together with the basis for such judgment.
- Guidelines should undergo rigorous external peer review by all interested parties. Responses to comments should be made public.
How to file comments to the IDSA guidelines.
View an example of comments you might make or modify.
There’s still time to take our Outcomes Important to Patients Survey. We have over 5,500 responses so far. Add your voice!
LYME POLICY WONK is written by Lorraine Johnson, JD, MBA, Chief Executive Officer of LymeDisease.org.You can contact her at lbjohnson@lymedisease.org. On Twitter, follow her @lymepolicywonk .
I have chronic Lyme disease. I feel the current guidelines have harmed me and many others. I suffer silently with not being able to work or provide for my family. And I have many in my family that suffers with chronic Lyme disease. I was misdiagnosed for years by doctors who were not trained in Lyme disease. Even if they were the testing is inaccurate. This happens more and more around the world. How many need to die before you update the guidelines? Due to the current IDSA guidelines for Lyme, lots of people in the world are suffering, becoming chronic, and dying. And due to this corruption by being denied and/or ignored by health care workers, physicians, labs, pharmacies, and insurance companies. The insurance companies rely on your guidelines to determine whether they will cover costs for patients! I’m pleading won’t you please update the guidelines and correct the wrong doings and help save lives worldwide? If a doctor uses a lyme protocol which can save lives but is different from the current out-dated guideline that doctor can lose their license and be sued. Making it harder for us to find doctors and be treated properly. I think its wrong for you to sit stagnant on these faulty guidelines. Why is it that it’s common for IDSA doctors to receive monetary compensation from corporations in the medical industry? In doing so, corporations control how doctors can treat Lyme disease?
Don’t you think these guidelines are based on greed? All while I’m left to being misdiagnosed, lied to, denied, ignored, and suffer with chronic Lyme disease? Do you know what it’s like to live in chronic pain? Do you realize the guidelines are flawed and incorrect? And by leaving them the same year after year more people will be harmed.
Do you realize your guidelines are incorrect and causing great harm to people? Do you know lyme is everywhere? Do you know you are at risk too? When will we see accurate testing for Lyme? When will two tier testing end? We need better research, we need help and it starts with integrity of doing the right thing. A cure for chronic Lyme disease starts with the truth and starts the moment you update the guidelines. Please stop rejecting science and please help humanity.
I was a very happy & healthy woman. Then one day at 49 I became bedridden. Lost a job I loved. I had 5 sick days in 12 years before Lyme. I travelled the world. I played sports. I went to numerous doctors & was only put on antidepressants for 3 and a half years. They never helped just lots of side effects. Finally at a lyme literate doctor & on a lot of antibiotics,supplements. Things are finally looking up. I never thought I would get sick but even worse felt shamed that it’s lyme. You get a lot… but you look good. They don’t realize an hour of activity sends you to bed for the rest of the day. But I’m grateful for the hour because before treatment I had 5 excruciatingly painful symptoms all at one, everyday & couldn’t function at all. Please fix the system so productive people don’t become a burden on the health system. This can & should be prevented.
I was a happier and healthier woman prior to 2005. In 2003 and 2004, I spent the summers on retreat in the woods of NY. My tent was spotted all over with these poppy-seed sized bugs, which I now know are tick nymphs. I did have a circular rash but not Bulls eye on my arm. I did a pioneering thesis in NP school and was planning on teaching healing after an invite from my mentor. My life has changed gradually, become more and more restricted. Recently hospitalized from a reaction to medication for babesia, not one doctor had ever heard of the med, and only one had heard of babesia. And a neurologist, refused to provide me any information about symptoms I am having for fear of being taken to court. PLEASE make it easier for doctors to treat without fear of reprisal.
Did they give any reason for extending the comment period? Do you think this is a good sign? Also hasn’t wormser, steer, and Barbour served on all the guideline panels? How are they not excluded from serving since they have before?
Though I think it should be done, I don’t think commenting to this organization really accomplishes much. It is like the sheep complaining to the wolf about the wolf.
FIRST DO NO HARM!!!
All doctors take an oath upon exiting medical school, however many are practicing corporate or corrupt medicine and many are suffering remember this….
I swear to fulfill, to the best of my ability and judgment, this covenant:I will respect the hard-won scientific gains of those physicians in whose steps I walk, and gladly share such knowledge as is mine with those who are to follow.I will apply, for the benefit of the sick, all measures which are required, avoiding those twin traps of overtreatment and therapeutic nihilism.I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon’s knife or the chemist’s drug.I will not be ashamed to say “I know not,” nor will I fail to call in my colleagues when the skills of another are needed for a patient’s recovery.I will respect the privacy of my patients, for their problems are not disclosed to me that the world may know. Most especially must I tread with care in matters of life and death. If it is given me to save a life, all thanks. But it may also be within my power to take a life; this awesome responsibility must be faced with great humbleness and awareness of my own frailty. Above all, I must not play at God.I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person’s family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick.I will prevent disease whenever I can, for prevention is preferable to cure.I will remember that I remain a member of society, with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm.If I do not violate this oath, may I enjoy life and art, respected while I live and remembered with affection thereafter. May I always act so as to preserve the finest traditions of my calling and may I long experience the joy of healing those who seek my help.[5]
Just been dx with Lymes post being bitten 3 months ago. Scary!!! HELP!!
Here’s a list of resources to get you started:
https://www.lymedisease.org/lyme-info-links/