We, the Lyme Patients of the Patient-Led Lyme Community petition the non-federal members of the Federal Advisory Committee, the Tick Borne Disease Working Group, TBDWG to do the actions described herein. 

Lyme Disease patients and their loved ones were in the process of submitting the following in public comments to the TBDWG when the TBDWG issued a written notice that the new deadlines for public comments was October 17th, 2022.  When the TBDWG issued a new deadline for public comments, patients were deceived into thinking that they did not need to have their comments submitted by October 11th.  We are therefore including a link to our WRITTEN PUBLIC COMMENTS herein and very strongly urge the non-federal members to at least read what we are asking them to do - for the benefit of millions. (Lyme Patients' Public Written Comments

Since most patients, due to cognitive limitations or extreme discomfort, were unable to listen to the two days and 8-12 hours of the October 4-5th TBDWG meeting in which a ‘spur of the moment’ deadline for public comments that would be used in the TBDWG Final Report to Congress analysis was verbally announced, and because the rules of TBDWG Public Comments are not documented or documented clearly, patients did not understand that not only are there 2 ways to submit public comments (1. comments with a 4-page maximum that are due just prior to a public meeting and that indicate the meeting date in the subject line and 2. comments that do not indicate a meeting date, have no page maximum, and that are received every day of the year), much less that the new October 17th deadline did not pertain to comments that would be included in the final TBDWG analysis – as the deadline for public comments that would be included in the final analysis of public comments remained October 11th.  Patients are therefore petitioning the non-federal members of the TBDWG and making them aware of the public comments patients were in the process of sending in, so that the non-federal members understand what patients want and need.  Lyme Disease medicine will not be allowed to progress and the suffering of millions will not end until the issues identified in the following are documented and addressed.

Lyme Disease patients and the loved ones of Lyme Disease patients are greatly impacted by the corruption of Lyme Disease medicine and the federal health agencies’ for 4 decades causing patients to be; 

· unable to get accurate testing and to have their Lyme accurately diagnosed,

· unable to get effective treatment, 

· unable to have get insurance to cover treatment costs, 

·  unable to obtain knowledgeable medical care by a doctor that actually understands what Lyme Disease causes and how to treat it, (because for 40 years the federal health agencies, ALDF and IDSA knowingly misinformed doctors about Lyme and the CDC Lyme test (acute (weeks 4 to 6 ONLY) and 71% false negatives (Bay Area Lyme Foundation, BALF, 2020)),

· unable to be awarded private and federal disability based on their Lyme Disease diagnosis and illness, 

· unable to work and engage in activities (life), 

· unable to escape financial ruin due to the inability to work and the great cost of available treatments, 

· without the support and understanding of family, friends, the public and medical providers that have been lied to about Lyme Disease – lying about 1.) it being is a serious and disabling illness that results in devastating multisystem illness and neurological, immune, and neuroimmune outcomes and 2.) the CDC test (that does not work, is for acute cases only (CDC itself), and results in 71% false negatives (BALF, 2020) for that serious illness causes millions to go undiagnosed.).

The TBDWG is in its 5th and final year. The lives of patients have NOT gotten better.  They are still not tested with an accurate non-CDC Lyme Disease test and instead they are still told that they do not have Lyme when they do (due to the acute-only and 71% false negatives CDC Lyme Disease test and because doctors have been told incorrect information about Lyme Disease for 40 years (causing more and more patients to go undiagnosed and untreated so they become chronically ill and disabled.))  They are still told and have their loved ones, their communities, and the medical community told, that they “are crazy” and that their symptoms are psychosomatic. They are still unable to get Lyme treatment and treatment that is paid for by health insurance.  They are still unable to get federal and private disability as the federal government and private insurers pay uniformed doctors or doctors working on behalf of the anti-long-Lyme agenda to report they are not sick, not disabled, and if anything, are ‘only’ suffering from psychosomatic symptoms. They are still subjected to gaslighting that results from the false information and false statistics put out by the federal health agencies, ALDF, and IDSA that are based on 40 years of their telling doctors not to test for Lyme and if they do, that they must use the acute only (to be used only in weeks 4-6 according to the CDC websites) and 71% false negatives CDC Lyme Disease test (Bay Area Lyme, 2020).  They still do not benefit from Lyme Disease research funding or the minimal funding increases Lyme Disease research has gained in the last few years (Lyme research funding still falls below that Leprosy research funding) because the federal health agencies only fund and support studies that require patients have CDC Lyme Disease Test positives, and given the seronegativity of Lyme Disease (documented by Alan Steere and others in the 1980s and 90s but conveniently (for them) ignored since the 1993 reversal of Lyme medicine that was introduced by and has been maintained by the CDC and ALDF) ensures that studies do not study long-Lyme or chronic Lyme patients. And they have not and will not benefit from new diagnostics while the federal health agencies (and their affiliates like LymeX) utilize the CDC Lyme Disease test or the CDC Lyme Disease serum (which has been acquired through the application of the CDC Lyme Disease test (acute-only and 71% false negatives)) to approve any new Lyme Disease tests.  The issues and failures of the U.S. health agencies documented herein and that have caused great suffering in a great number of people (millions) and that have kept Lyme Disease medicine from progressing for 40 YEARS could be rectified through the immediate disclosure by the federal health agencies. Since they have been unwilling to do that and have once again manipulated the TBDWG so that they control the TBDWG vote and final Report to Congress, the above issues and those outlined below can be immediately relieved with the immediate actions of the non-federal TBDWG members.  As the federal TBDWG members control the TBDWG vote and Report to Congress recommendations and content, the non-federal members MUST vote against the majority and write minority reports as described below.  The non-federal members MUST also prepare their own documents, announcements, and Public Service announcements disclosing the truth about Lyme Disease and corruption of Lyme Disease medicine.  Lyme medicine will not be allowed to progress until the truth of the manipulation of Lyme Disease medicine is fully disclosed. Lyme Disease medicine science will not be allowed to progress until the need for continued coverups are eliminated.  The non-federal members are in the unique position to disclose truth and eliminate the continued need for cover up.  The non-federal members can very quickly reverse the damage done to Lyme medicine in the 1990s and maintained ever since and set Lyme Disease medicine on a trajectory to very quickly progress.  The non-federal TBDWG members are in the unique position to stand up to power and corruption, document the truth, and bring about the end to the corruption of Lyme Disease medicine and the gaslighting and suffering of millions – those “lucky enough” to know they have Lyme and the millions chronically ill who have Lyme Disease but remain undiagnosed.

The patients want and need the TBDWG non-federal members to do the actions described in the document found here (these contain our WRITTEN PUBLIC COMMENTS that we were sending in for the final report analysis until the TBDWG put out a public notice that comments would continue to be accepted for another week and confused patients delayed sending in their comments): Lyme Patients' Public Written Comments

(There is so much that needs done and needs to be documented for Lyme medicine to be allowed to progress, that Change.org petition size limits would not allow us to cut and paste all our comments here)

Non-federal members, please, this is our last chance and the timing, now that the people of the world are finally seeing how the government health agencies operate – always working to keep past actions hidden and to keep big pharma profits rolling in.  Illness, not cures, are profitable and that is what the public now understands is what the federal health agencies pursue.  

40 years of federal health agency lies and patients being undiagnosed and misdiagnosed so that they become chronically ill, disabled, and lose everything (including their Lyme friends that were unable to get help, adequate treatment, or escape the ridicule the federal health agencies’ Lyme agenda caused them to receive) – is 40 years too many.   The timing for your full disclosure of the complete truth about Lyme Disease and Lyme medicine could not be better (unless it could have happened 40 years ago, or 30, or 20, or 10 and been as well-received as it will be now that the public knows the federal health agencies work for big pharma profit and to keep their past actions covered up).   PLEASE, document the full truth about Lyme Disease and Lyme medicine’s corruption.  Keep your recommendations and chapter content true and complete. Do not fall for the federal health agencies ploy to make you feel you must “build bridges” because doing so only allows them to continue to insist on lies they have perpetuated about Lyme for 4 decades (they knew the seronegativity of Lyme and the CDC test would fail and they knew the mechanics of Lyme (that it persists and results in neurological, immune, and neuro-immune impacts) that they still to this day deny, despite it being documented in hundreds of peer-reviewed studies (that they pretend do not exist). Document the full and complete truth, vote against the federal agency majority, and write the Minority Reports that get that full and complete truth into the final TBDWG Report to Congress!  Patients can’t wait for another 40 years, or one more decade, or even another year – so many are barely able to make it through today and you can change everything for them in an instant, by just telling the truth, the full truth.

We also ask that non-federal members provide a statement written by us in your Minority Report. The real patients should be given a real chance to speak and have their statement presented to Congress.

Lyme Patients' PUBLIC WRITTEN COMMENTS

Thank you, the Lyme Disease Patients.