As summer approaches and people spend more time outdoors, many parts of the country will start to see cases of Lyme disease. It is carried by deer ticks and is especially common in the Northeast. Tick bites often go unnoticed, but the rash of Lyme disease is pretty characteristic and occurs in about 70-80% of those who are infected.
Erythema migrans, the typical rash of Lyme disease. Source.
It’s easily cured with antibiotics, but if untreated can have significant complications, such as arthritis, and various neurologic problems. As most of my readers know, there is also a movement that supports a diagnosis called “chronic Lyme disease” (CLD), which is, in most cases, not related to Lyme disease at all.
The controversy regarding CLD can get a bit bizarre, but the core reality is that real people are suffering, and real people are being misled. When a set of protean and debilitating symptoms are mislabeled as CLD, other diagnoses and treatments are left behind, and patients are often subjected to invasive and ineffective treatments.
Those of us who practice science-based medicine are often the targets of the CLD activists, and CLD activists are often our targets. I am very critical of health care professionals who mislead patients (intentionally or otherwise), and I receive plenty of hate mail from readers who think I’m being dismissive of their suffering. But I am not critical of patients who believe they have this disease. They are the victims of this controversy. And when the arguments and strategies get ugly, it is they who suffer. That is why I was especially angered by the email I received earlier this week.
I received this email in the account I use for blogging. Here is the full text:
Open Letter to the Mental Health Community from the Infectious Diseases Society of America
May 24, 2010
Delusional Chronic Lyme Syndrome (DCLS) affects tens of thousands of new victims every year. This debilitating mental illness is destroying the emotional and financial livelihood of families across our country.
As the Infectious Diseases Society of America (IDSA), we see firsthand the damage inflicted by this illness. Its sufferers frequently seek medical help from our member’s practices; however, we are powerless to cure its underlying roots, as this mental illness exists well outside our domain knowledge of pathogens and human infection. Therefore, we are strenuously imploring the mental health community to take up research action in earnest. After our Lyme disease treatment review panel concluded last month, it is now indisputably self-evident that DCLS has reached epidemic proportions and its yearly growth rate is alarming.
The historical duration, demographic breadth, and geographical extent of this mass psychogenic illness is a fascinating and unprecedented event in the history of our country, perhaps in the history of mankind. It has persisted for four decades, affects all ages, and exhibits an intriguing geographic clustering phenomenon. The intensity of its delusions drives sufferers to such extremes as self-mutilation via catheterization and sometimes suicide. Currently, there is no formal diagnostic classification or treatment regimen for DCLS. Meanwhile, this is empowering opportunistic medical doctors to prescribe improper and costly pharmaceutical treatment. This only furthers delays patients from seeking out the mental health professionals they so desperately need. Unfortunately, general awareness within the mental health field is virtually nonexistent.
As president of the IDSA, I bear some responsibility for this ignorance, by not encouraging more cross-discipline pollination of our medical information. As this crisis has illuminated, the IDSA has not been true to its stated core value to “promote collaboration and cooperation among other professional colleagues.” In response, I passionately pledge to our members and public constituents to reverse this myopic trend within our esteemed organization.
IDSA member, Dr. Gary Wormser, has been a tireless crusader in promoting awareness of this emerging illness. I owe him immense gratitude for keeping true to his values as a physician in the face of sometimes caustic opposition to his fresh ideas. We beseech mental health researchers to carry on the torch ignited by Dr. Wormser and create pervasive, national recognition for this destructive disorder. By doing so, you will bring hope and compassion to those afflicted by this strange and insidious illness.
To actualize this crucial transfer of information, the IDSA will be hosting free workshops on DCLS for mental health professionals at our upcoming annual meeting. This meeting will be hosted on October 21st through 24th, 2010 in Vancouver, Canada. We look forward to bringing the mental health community up-to-date on all relevant research and known data for DCLS. For more information, please contact the DCLS workshop coordinator at (xxx) xxx-xxxx.
Richard J. Whitley, MD
President, Infectious Diseases Society of America
I’m not sure what the purpose of this email is (and it is not from the IDSA). If it is a joke, it is a cruel one. It seems to me more likely, though, that this was written by a chronic Lyme activist as a piece of “false flag” agitprop. It also seems to particularly target Dr. Wormser, a Lyme disease expert who has worked on IDSA Lyme disease guidelines in the past. Wormser has been the target of barely comprehensible hate-filled rantings on various chronic Lyme disease websites. I don’t think this is a coincidence.
I read this as a “Dr. Wormser and the IDSA think all the chronic Lyme folks are crazy,” something they most assuredly do not believe.
This is what the IDSA actually says about chronic Lyme disease:
In rare cases, people who have been diagnosed with Lyme disease and properly treated have lingering symptoms, typically generalized pain, joint pain and fatigue. These symptoms have been interpreted by some to suggest the presence of chronic Borrelia burgdorferi infection.
However, an extensive review of scientifically rigorous studies and papers available to date, has determined that there is no convincing biologic evidence to support a diagnosis of chronic Lyme disease after completion of the recommended treatment.
There is no doubt that patients with persistent symptoms are suffering, but many report non-specific symptoms that also are associated with a number of other medical conditions. To be certain they receive the proper medical care, people who continue to have symptoms that persist after appropriate antibiotic treatment for Lyme disease should talk to their physicians about whether the original diagnosis of Lyme disease was accurate or if they may have a different or new illness.
The CLD activists would like to paint the medical community as a gang of heartless and cruel thugs beholden to…I don’t know, someone bad, though. The truth is somewhat different, and it appears that they are now trying to create their own truth. By and large, doctors are compassionate and became doctors to help people. We recognize that people are suffering, and also recognize that inventing a diagnosis and treating people improperly does not help. But helping someone who has been given a fake diagnosis can be a daunting task, and it is not made easier by cruel hoaxes.