Buried Warnings: Vaccine-Triggered ME/CFS, POTS, and Dysautonomia
When thousands of people develop the same disabling symptoms after a medical intervention, it should make headlines and trigger urgent investigation. Instead, what many encounter is denial, dismissal and abandonment. Over the past two decades, a clear pattern has emerged after vaccines like Gardasil for HPV and now the COVID shots. People who were previously healthy developed profound fatigue, dizziness, palpitations, exercise intolerance, brain fog, headaches, autonomic dysfunction etc. Many were later diagnosed with ME/CFS, POTS, broader dysautonomia or CRPS (Complex Regional Pain Syndrome). Too often, they were told it was just anxiety, stress, FND (functional neurological disorder aka conversion disorder), post viral fatigue, psychosomatic, or a coincidence.
This is not a fringe phenomenon. Signals appeared early in safety reports and clustered case series, yet were minimized or declared non-causal. The result is a growing group of patients who are misdiagnosed, gaslit, and left without care.
A personal note
A loved one in my family developed POTS and dysautonomia months after receiving the HPV vaccine (Gardasil). Overnight, normal life became a maze of dizzy spells, heart rate spikes, brain fog, pain, and exhaustion. Instead of curiosity and care, we met misdiagnosis and mistreatment. Multiple hospital stays, ambulance rides, and doctors who would not provide any answers, nor offer empathy. We were gaslit, dismissed, and left to navigate this alone. We were told the symptoms were psychosomatic. It took months to find and see providers who understood autonomic dysfunction and confirmed the diagnosis. We were left with PTSD and deep distrust. Our story is not unique; it's part of a larger pattern.
What are ME/CFS, POTS, and Dysautonomia?
ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) is a disabling chronic illness characterized debilitating fatigue, post‑exertional malaise, unrefreshing sleep, cognitive dysfunction, and often autonomic problems. It is now recognized by the CDC and the NIH.
POTS (Postural orthostatic tachycardia syndrome) is a common dysautonomia where the heart rate jumps excessively on standing, accompanied by dizziness, palpitations, headaches, and exercise intolerance.
Dysautonomia is a broader term for dysfunction of the autonomic nervous system that controls heart rate, blood pressure, temperature regulation, digestion, and more. POTS is one form of dysautonomia.
HPV vaccine signals that were easy to ignore
After Gardasil’s rollout, clusters of adolescents reported syndromes involving autonomic dysfunction: POTS, CRPS, fatigue, fainting, pain, and headaches. Case series from Japan and Denmark noted consistent symptom patterns. While regulators acknowledged the reports, they concluded no causal link, which had the real-world effect of halting investigation and discouraging doctors from taking complaints seriously. Stories and documentaries began disappearing from the internet during the COVID pandemic.
While large population studies have shown mixed results, newer analyses (including a 2025 study in Drugs - Real World Outcomes) reported elevated risks for autonomic dysfunction and menstrual issues post-vaccination. These signals deserve further study and transparency, not dismissal.
COVID vaccines and the intensifying pattern
During and after the mass COVID vaccination campaigns, specialty clinics and health‑system analyses began reporting patients with new or worsened POTS‑like syndromes after vaccination. Sequence‑symmetry and cohort studies show increased odds of POTS‑associated diagnoses in the 90 days after vaccination compared with the 90 days before. At the same time, multiple analyses state that SARS‑CoV‑2 infection itself carries a higher risk of POTS than vaccination. Both can be true and yet, post-vaccine symptoms remain vastly understudied. For injured patients, the lived reality is the same: symptoms are real and disabling, and they need care.
Systematic reviews and case series now describe post‑vaccine POTS and mechanisms under study, including immune triggers, small fiber neuropathy, and autonomic receptor autoantibodies. These papers do not prove causation in every individual, but they validate that what patients report is plausible and clinically recognizable.
But it’s not just about POTS. Long COVID has brought widespread attention to post-viral syndromes, many of which closely resemble ME/CFS and dysautonomia. Fatigue, brain fog, exercise intolerance, and post-exertional crashes are no longer rare, misunderstood symptoms. They’re part of mainstream conversation now.
What many people don’t realize is that long COVID often is ME/CFS or POTS, triggered by a new virus. Researchers now see long COVID as a form of post-viral illness that shares mechanisms with older, lesser-known conditions. That means many long COVID patients are actually experiencing what ME/CFS patients have faced for years: devastating symptoms, misunderstood physiology, and minimal support.
The tragedy is that those who developed the same syndromes after vaccination, not infection, have been dismissed. But the dysfunction is the same. The treatment paths are often the same. And the need for recognition and care is just as urgent. Finding a provider who knows how to diagnose and treat these conditions are rare and some have 6-18 months waitlists or do not accept new patients.
Why some bodies may be more vulnerable: the EDS connection
There is a well‑documented overlap between hypermobile Ehlers‑Danlos syndrome or hypermobility spectrum disorder and autonomic dysfunction. In a cross‑sectional study using the 2017 hEDS criteria, 31 percent of people with POTS met full criteria for hEDS and 55 percent showed generalized joint hypermobility. Other cohorts report that up to half of patients with hEDS or HSD meet POTS criteria. This does not mean every person with hEDS will develop POTS, but it does suggest a biologic vulnerability in connective tissue and small nerve fibers that can destabilize the autonomic system, making it easier for a stressor to tip someone into illness.
Emerging work also notes joint hypermobility in a subset of people with ME/CFS, supporting clinical observations of overlap. More research is needed, but if you or your loved one has hEDS or HSD and then develops ME/CFS or POTS after a major immune event, you are not imagining the connection.
How signals get buried
Here is the common playbook patients repeatedly run into:
1) If symptoms like fainting, appear in trials, they are reclassified as unrelated, not pre‑specified outcomes, or simply excluded by design.
2) If clusters appear post‑market, they are labeled anecdotal.
3) When patients persist, the narrative shifts to mass anxiety or coincidence. This is how real injuries are sidelined and why so many people are left undiagnosed for months or years. The HPV record shows the tension clearly: reports of POTS and CRPS were logged and reviewed by regulators while official summaries concluded no causal link, which functionally discouraged clinicians from recognizing patterns and referring for autonomic evaluation.
If this is you, you are not alone
If your symptoms started after vaccination, you deserve to be taken seriously. The timing matters. Patterns matter. And there are concrete steps you can take to get help.
Record your symptoms while laying down, sitting and standing. Find a clinician familiar with dysautonomia: cardiology or neurology clinics with POTS experience, or dysautonomia specialty centers. Ask for objective autonomic testing: properly performed orthostatic heart rate and blood pressure measurements are cheap and reliable and you can even do them at home.
What I want people to know
If you developed ME/CFS, POTS, or dysautonomia after a vaccine, you are not crazy and you are not alone. There is a recognizable pattern in the literature and in clinics. The science is evolving, but your symptoms are real and deserve care. For those considering vaccination, ask what outcomes were actually measured in trials, which symptoms were excluded, and whether long‑term autonomic follow‑up was done. Informed consent requires that level of honesty.
If you are in this with no roadmap, I work with people navigating medical harm and dysautonomia. Together we can map next steps, stabilize daily life, and advocate for the evaluations and care you deserve.
