Beware of Ehlers-Danlos Syndrome Scams

Ehlers-Danlos Syndrome (EDS) is a complex, often misunderstood condition that affects connective tissues, leading to challenging symptoms like joint instability, chronic pain, and fatigue. The difficult journey toward diagnosis and treatment leaves EDS patients vulnerable to scams and questionable products or therapies promising quick fixes. Here’s a rundown of common scams associated with EDS, some broader healthcare scams, and advice on making informed decisions to avoid financial or emotional harm.

Common Scams Targeting the EDS and Chronic Illness Community

1. "Miracle Cures" and Unproven Treatments

EDS patients are frequently targeted by companies and individuals claiming they have a “miracle cure” for EDS symptoms. These offerings often include expensive supplements, stem cell therapies, or purportedly groundbreaking “DNA-based treatments.” Unfortunately, these treatments lack scientific validation. Treatments advertised as quick fixes or cures are unlikely to work and often exploit people searching for relief.

2. Genetic Testing Scams

While genetic testing can help diagnose some forms of EDS, like vascular or classical EDS, hypermobile EDS (hEDS) does not yet have a known genetic marker. Despite recent discoveries, like research from the Norris Lab identifying a gene associated with hEDS, no commercial test is available yet. Nonetheless, some companies are using this discovery to market “hEDS genetic tests,” which can mislead patients desperate for answers. Reliable genetic testing should always be conducted under the guidance of a qualified geneticist or EDS specialist, so be cautious of companies claiming to diagnose hEDS with a test.

3. Alternative Therapy Scams

Integrative and alternative medicine can offer valuable support, especially for complex, chronic conditions like EDS. However, some scammers claim their therapies alone can manage or cure EDS, selling services like energy healing, detoxification regimens, or other methods with no evidence backing. These offerings are often pricey and can distract patients from essential medical care. For patients with dietary sensitivities, adding multiple supplements at once can make it difficult to understand which is triggering symptoms.

Legitimate integrative doctors understand EDS’s complexities, listen to patient concerns, and create realistic support plans. If a provider’s recommendations involve numerous expensive supplements or therapies, it may be wise to seek a second opinion, but it doesn’t necessarily mean their service is a scam. Some of the best providers for EDS use a homeopathic and dietary approach in their treatment plans. If in doubt, consult other medical professionals and patients who have experience with the practice.

4. Unregulated Direct-to-Consumer Products

Direct sales often capitalize on community networks, making them appear friendly and supportive. EDS patients are commonly targeted with MLM products like wellness supplements or pain relief gadgets that lack scientific backing. One notorious practice involves selling regular table salt at high prices, labeled with claims of exceptional health benefits that are not validated or even reviewed by the FDA. While salt tablets and other types of electrolyte tablets or powders are helpful, their benefits can often be achieved with less costly options, like table salt and low-sodium potassium salt. Some find chewable and dissolvable electrolyte supplements convenient and tasty, but cheaper options often work just as well. Another product often marketed misleadingly is probiotics, which are sometimes advertised with unverified claims. Even experts like Dr. Laura Pace caution that the science around probiotics in EDS is still developing, making any specific intervention claim questionable.

Real-World Examples of Possible Healthcare Scams

The healthcare industry has no shortage of scams, some of which promise cures for conditions that have no known cure, while others exploit insurance loopholes. Here are some examples of possible scams targeting people with chronic illness. The hardest part about identifying scams is that while these examples have been flagged as possible scams, it is entirely possibe that these medical protocols and healthcare practices are legitamate. That's why it is so dificult to identify scams in healthcare.

1. "Wellness" Protocols Promising Reversals of Incurable Illnesses
   Many chronic illness patients are drawn to wellness programs claiming they can reverse complex diseases through dietary changes or supplements. An investigative article in Mother Jones highlights one such case where a practitioner claimed to reverse lupus—a disease with no known cure—using a vegan smoothie diet. The practitioner profited from expensive, highly structured dietary protocols that promised healing. This program involved tracking meals, attending weekly meetings, and watching daily motivational videos. Despite the program’s high cost, no peer-reviewed studies support its efficacy in treating lupus. Read the full investigation here: "Meet the Influencer Who 'Reverses' Lupus—With Smoothies", Mother Jones.
2. Insurance Companies Scam Medicare Advantage with Diagnoses for Profit
   Clinics that accept insurance and even insurance companies themselves are not necessarily free from scams. An investigation by The Wall Street Journal found that some Medicare Advantage insurers exploit their access to patient records to add diagnoses that result in higher payouts, even when these diagnoses don’t align with patients’ actual conditions. Patients may be misdiagnosed with conditions like diabetic cataracts or HIV, which would increase government payments to the insurers. The analysis revealed that patients were often not treated for the conditions listed, raising questions about fraud. For example, a retired accountant was diagnosed with diabetic cataracts despite not having diabetes, and insurers were reimbursed for unneeded treatments. More on this disturbing practice can be found here: "Insurers Pocketed $50 Billion From Medicare for Diseases No Doctor Treated", Wall Street Journal.
3. Probiotic Supplements with Unsupported Claims
   Probiotics are another widely marketed supplement for chronic illness, with claims of benefits for gut health, immunity, and more. However, scientists and medical professionals often caution against probiotics' universal application. For instance, Stat News reported on studies showing that probiotics might disrupt gut balance and potentially interact negatively with other medications. In one study, melanoma patients on immunotherapy had poorer outcomes when taking probiotics. Although many probiotics promise digestive health benefits, the science behind these claims is still evolving. See more here: "Probiotics Come with Bold Health Claims, but the Science is Shaky", Stat News.
4. The Problematic Promises of Wellness Culture
   Wellness culture can create a toxic environment, especially for people with chronic illnesses. According to an article by Chronic Mom, wellness influencers often encourage people to believe their health problems are self-inflicted, which can lead to guilt, shame, and increased suffering. The influencers may start by sharing well-intentioned health tips but often pivot to promoting expensive supplements, detox kits, and courses. This progression is often financially motivated, exploiting followers’ health concerns for profit. Wellness culture preys on people’s need for answers, promising that "trying harder" or “positive thinking” will cure their illness. For a more in-depth look, read: "How Wellness Culture is Toxic for People with Chronic Illness", Chronic Mom.
5. Stem Cell Therapy ScamsThe field of regenerative medicine is attractive for its potential to restore damaged tissues through stem cell therapies, offering hope to those without many options. However, this promise has opened the door to unethical clinics advertising stem cell treatments for unproven uses, like Alzheimer's, cerebral palsy, or knee pain. Many of these clinics lure patients with testimonials and unregulated "clinical trials" on sites like ClinicalTrials.gov, which may not be rigorously vetted. Reports reveal that some patients suffer severe adverse effects, including blindness and tumors, from these treatments, all while paying tens of thousands of dollars. Reliable institutions like the Mayo Clinic and California Institute for Regenerative Medicine work to educate the public on legitimate, science-based options and the importance of FDA-approved trials. To protect oneself, experts advise consulting with reputable sources and approaching clinics offering "miracle cures" with caution (Ortolano, 2020).

Navigating the Complexities of Medical Information

Peer-reviewed research often lags behind the clinical practice of medicine, and widespread medical practices lags even further behind the leading experts. By the time a new surgical technique or treatment protocol gains widespread acceptance, it is often already over a decade old. If a new treatment is more expensive than the current standard of care, insurance companies frequently refuse to cover it until public opinion or an overwhelming amount of published data make it unavoidable. Additionally, the peer review and FDA approval processes aren’t flawless, and some medications are appoved despite only showing marginal benefit. This all adds layers of complexity that make it hard for the average patient—or even a doctor—to understand the best path forward.

If you’re trying to evaluate a potential treatment option, it’s wise to discuss it thoroughly with a trusted doctor, who can offer insights into its validity and safety. Connecting with patients ahead of you on the journey can also be valuable, as their firsthand experiences can offer a practical perspective. Online communities like Reddit and dedicated EDS forums provide spaces to ask questions and learn from others navigating similar treatment challenges.

How to Protect Yourself and Find Legitimate Resources

Patients with EDS and their loved ones can protect against these scams by following a few critical steps:

1. Consult Trusted Organizations and Specialists: Stick to reputable EDS organizations like The Ehlers-Danlos Society, Dysautonomia International, or Chronic Pain Partners. These groups provide accurate, reliable information and resources tailored to EDS patients’ needs.
2. Question Big Promises: Be cautious of any treatment or product that claims to cure or completely alleviate EDS symptoms. Because EDS is complex, management usually requires a multi-faceted approach rather than a single “miracle” solution.
3. Seek Medical Opinions: If a product or treatment sounds appealing, discuss it with a trusted healthcare provider knowledgeable about EDS. Geneticists, rheumatologists, and integrative doctors who specialize in EDS are typically best positioned to provide informed guidance.
4. Evaluate Alternative Therapies Carefully: While integrative and naturopathic providers can be invaluable in managing symptoms, treatments with high costs and little evidence should be scrutinized carefully. Seek second opinions to avoid overpaying for therapies available at a lower price elsewhere.

Staying Vigilant and Informed

As EDS awareness grows, patients must stay vigilant. Scammers rely on misinformation and desperation to profit, so it’s essential to rely on trusted experts, question extraordinary claims, and verify sources before committing financially. Staying informed can help ensure that patients access genuine support and resources without falling victim to misleading and potentially harmful scams.

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References

• Julia Métraux, "Meet the Influencer Who 'Reverses' Lupus—With Smoothies," https://www.motherjones.com/food/2024/03/brooke-goldner-goodbye-lupus-smoothies-social-media-influencer/, Mother Jones, March 26, 2024.
• Christopher Weaver, Tom McGinty, Anna Wilde Mathews, and Mark Maremont, "Insurers Pocketed $50 Billion From Medicare for Diseases No Doctor Treated," https://www.wsj.com/health/healthcare/medicare-health-insurance-diagnosis-payments-b4d99a5d, The Wall Street Journal, July 8, 2024.
• Megan Scudellari, "Probiotics Come with Bold Health Claims, but the Science is Shaky," https://www.statnews.com/2016/01/21/probiotics-shaky-science/, Stat News, January 21, 2016.
• Meghana Keshavan, "Probiotics Are Touted as Good for the Gut. They May Be Trouble for the Immune System," https://www.statnews.com/2019/04/02/probiotics-are-touted-as-good-for-the-gut-they-may-be-trouble-for-the-immune-system/, Stat News, April 2, 2019.
• Chronic Mom, "How Wellness Culture is Toxic for People with Chronic Illness," https://www.chronicmom.com/2021/07/how-wellness-culture-is-toxic-for-people-with-chronic-illness.html, Chronic Mom, July 26, 2021.
• Cort Johnson, "Gut Disruption and Dysfunction in Post Viral Diseases – Laura Pace’s Bracing Talk," https://www.healthrising.org/blog/2023/06/20/post-viral-gut-disruption-laura-pace/, Health Rising, June 20, 2023.
• Megan Scudellari, "How Everlywell and Other Home Health Tests Are Misleading Consumers," https://www.statnews.com/2018/01/23/everlywell-food-sensitivity-test/, Stat News, January 23, 2018.
• Vice, "Your Pain Is Not Real: How Doctors Discriminate Against Women," https://www.vice.com/en/article/nz9wbg/your-pain-is-not-real-how-doctors-discriminate-against-women, Vice, February 12, 2017.
• Natalya Ortolano, “How Do You Separate Scientifically Sound Stem Cell Therapies from Scams?” https://www.statnews.com/2020/08/18/separate-scientific-scam-stem-cell/, Stat News, August 18, 2020.

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