Cross posting from the Change.org update below. Please take the time to read the anonymous open letter from a Lyme disease “expert”...

Open Letter of Apology to Lyme Disease Patients Highlights Systemic Failures and Barriers to Care
https://www.change.org/p/request-for-senate-hearing-on-inequities-with-chronic-lyme-disease/u/33390654

Patient Centered Care Advocacy Group
Burtonsville, MD, United States
Apr 1, 2025

Open Letter of Apology to Lyme Disease Patients Highlights Systemic Failures and Barriers to Care

WASHINGTON, DC, April, 1—A provocative open letter purportedly written by an anonymous Lyme disease “expert” has resurfaced, highlighting the ongoing struggle of millions of Americans suffering from Persistent/Chronic Lyme Disease (PLD/CLD) who face systemic barriers to proper diagnosis, treatment, and support.

The letter was circulated within the Lyme community in May 2014 and posted on WhatisLyme.com.

The Patient Centered Care Advocacy Group has republished this letter with permission from Lisa Hilton, founder of WhatisLyme, at a time when patients continue to report widespread denial of medical care and insurance coverage for chronic Lyme treatments.

"Even though this letter is clearly a parody, it appears to be a fairly accurate assessment. Whoever wrote it was in the trenches on the front lines of the ’Lyme Wars,’" said Bruce Fries, President of the Patient Centered Care Advocacy Group.

According to Fries, “this republication coincides with growing concerns about the estimated two million Americans suffering from chronic Lyme who endure significant barriers to care.”

As reported by recent advocacy campaigns, patients face multiple systemic challenges, including physicians' reluctance to treat chronic Lyme due to fear of disciplinary action from medical boards, rejection of disability benefits, and workplace accommodation denials.

The economic burden is staggering, with billions lost in healthcare costs and productivity. Many patients report financial ruin attempting to fund treatments outside insurance coverage, while others describe a devastating cycle of medical gaslighting when their symptoms persist beyond standard treatment protocols.

“The dominance of restrictive treatment guidelines has created a healthcare environment where patients are routinely told their ongoing symptoms are psychological rather than biological,” noted Fries. “This letter, while satirical, gives voice to the frustration patients feel when encountering a medical system that seems more focused on preserving outdated paradigms than addressing their suffering.”

The republished letter details numerous scientific controversies in Lyme disease research, including contested claims about transmission methods, geographical distribution, and appropriate treatment durations. While presented as satire, these points mirror actual scientific debates that continue to divide the medical community while patients suffer without adequate care.

The letter can be viewed here:

Open Letter of Apology to Lyme Disease Patients

About Patient Centered Care Advocacy Group
The Patient Centered Care Advocacy Group is a 501(c)3 nonprofit organization that advocates for improved care and access to care for chronically ill patients who are underserved, marginalized and discriminated against by the medical establishment. Its current focus is raising awareness about the risk and impact of congenital Lyme disease and collaborating with other nonprofits and federal agencies to advance research.