Are all Lyme disease fundraisers scams?

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Real cases of Lyme disease are curable with cheap, generic antibiotics, the costs of which are usually covered by health systems. Therefore, any fundraiser for Lyme disease treatments is likely to be for fraudulent “Chronic Lyme” treatments.

Crowdfunding sites such as GoFundMe have hosted thousands of questionable fundraisers for so-called Lyme disease. Ethicists writing in JAMA were particularly concerned about fundraisers they found for risky long term antibiotics.

Because “Chronic Lyme” is a pseudoscientific belief system, all manner of quack treatments have been peddled as possible treatment. In a 2015 scientific review, scientists listed 30 “unorthodox” Lyme therapies without evidence for efficacy.

Some of the more bizarre cure-alls sold to treat “chronic Lyme” include ozone, bee venom therapy, long term antibiotics, herbs, homeopathy, rife machines, coffee enemas, various “detox” products, stem cells, malaria injections, hydrogen peroxide, and intravenous garlic.

According to the FDA, health fraud is defined as:

The deceptive promotion, advertising, distribution, or sale of a product represented as being effective to prevent, diagnose, treat, cure or lessen an illness or condition, or provide another beneficial effect on health, but that has not been scientifically proven safe and effective for such purposes.

The FDA definition of health fraud does not require any specific intent to defraud. Many practitioners who advertise as “Lyme literate” are well-meaning but incompetent. Nevertheless, chronic Lyme quackery can be very financially lucrative.

Victims of health fraud who receive a fake “chronic Lyme” diagnosis are told that their health depends on seeing a “Lyme literate” doctor and avoiding mainstream doctors. Social media and deceptive pseudoscience organizations (many with “Lyme” in their names) gladly refer patients to “Lyme literate” doctors.

The victims are usually diagnosed with multiple fake coinfections, which makes them even more likely to believe that a mainstream doctor cannot handle their complex situation. Therefore, “Lyme literate” practitioners have a captive market and can charge inordinate amounts of money.

Many turn to crowdfunding to afford the expensive hope sold by “Lyme literate” practitioners. Quackery is therefore fed by friends, families, and even whole communities who think that they are paying for life-saving treatments. When the patient is a minor, the crowdfunding can facilitate Medical Child Abuse.

The LymeScience list of Red Flags of Chronic Lyme Quackery may be useful for determining if a fundraiser is for fraudulent treatments.

Video: How Lil Nas X Got Fooled by the “Chronic Lyme Disease” Scam

After a desperate plea by victims of chronic Lyme quackery, rapper Lil Nas X offered money to pay for dubious treatments. Rebecca Watson, a long time advocate for science and skepticism, discussed what happened in the video below. A transcript and links are available on the Skepchick web site.

References

Below are articles about fundraisers for quackery, many that specifically discuss Lyme disease.

Dr. David Robert Grimes: Fundraising appeals for the desperately ill are moving, but evidence is crucial

Dr. Daniel Summers: Predator Doctors Take Advantage of Patients With ‘Chronic Lyme’ Scam

Rebecca Watson: Lil Nas X Got Fooled by the “Chronic Lyme Disease” Scam

The Courier-Mail: Australians who claim to suffer Lyme disease send a spike in crowd­funding

Murdoch, et al. Media portrayal of illness-related medical crowdfunding: A content analysis of newspaper articles in the United States and Canada. Plos One. 2019.

Snyder J, et al. Appealing to the crowd: ethical justifications in Canadian medical crowdfunding campaigns. J Med Ethics. 2017;43(6):364-367.

Vox F, et al. Medical Crowdfunding for Scientifically Unsupported or Potentially Dangerous Treatments. JAMA. 2018;320(16):1705-1706.

Ford Vox, Kelly McBride Folkers, Arthur Caplan: Medical Crowdfunding’s Dark Side

MinnPost: Crowdfunding sites raise millions for dubious treatments, study finds

The Guardian Editorial Board: A-list fundraising: hogging the Lyme light

Dr. David Gorski: The Compassion Gambit

Dr. David Gorski: Crowdfunding: The fuel for cancer quackery

NECN: Desperate & Duped? GoFundMe Means Big Bucks for Dubious Care, Study Finds

Dr. Steven Novella: ‘What Used to Be Fraud Is Now Alternative Medicine’ (video)

Boing Boing: Gofundme jumpstarts a golden era of snake oil as desperate people raise millions for quack homeopathy cancer “remedies”

Elite Learning: 7 Red Flags for Fraud in Medical Records

Kwakzalverij.nl: Lymepatiënten houden kwakzalvers in leven met fundraising (Lyme patients keep quacks alive with fundraising)