State-Level ME/CFS Prevalence Methodology

Using CYNAERA’s recalibrated tiered prevalence model, weighted for environmental exposure, access to paid sick leave, and diagnostic inequity, we estimate that around 14.4 million Americans currently meet the diagnostic criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).

This reflects true prevalence, not diagnosis rates, and corrects for decades of institutional undercounting. When aligned with the harmonized US-CCUC™ national range of 15–21.5 million, the 14.4M figure demonstrates both accuracy and visibility. The small delta (~0.6M) is plausibly explained by diagnostic suppression in LGBTQ+ populations, which is not yet integrated into the state-level table【Jason et al., 2023; CDC, 2023】.

Tiered Prevalence Logic

• Tier 1 (6%) – States with severe environmental stressors (wildfire smoke, mold-prone housing, poor air quality), weak labor protections, and large BIPOC/immigrant populations. These factors amplify both illness severity and diagnostic suppression.

• Tier 2 (4%) – States with moderate environmental burdens or structural inequity. Illness prevalence is high, but partial buffers exist, such as limited paid leave, moderate provider awareness, or partial diagnostic infrastructure.

• Tier 3 (2%) – States with stronger ME/CFS research hubs, earlier clinical recognition, and better disability and sick leave supports. These stabilizers reduce the proportion of patients progressing to severe disability, even when infections occur.

This tiered system ensures ME/CFS is modeled not as a flat national rate, but as a terrain-dependent condition, a principle CYNAERA also applies in its global modeling.

Tier 1 States (6%)

High environmental stress, weak sick leave, systemic inequity

• California – 2,359,440

• Florida – 1,314,120

• Texas – 1,742,760

Why Tier 1 matters: In states like California and Texas, mold-prone housing, wildfire exposure, and poor labor protections combine with racial diagnostic bias to create both higher prevalence and higher invisibility. Federal prevalence estimates have historically missed these populations almost entirely【Sabin et al., 2009】.

Tier 2 States (4%)

Moderate environmental burden, systemic inequity

• Alabama – 196,920

• Arizona – 295,040

• Arkansas – 137,080

• Colorado – 235,920

• Delaware – 41,040

• Georgia – 440,680

• Hawaii – 114,280

• Illinois – 507,440

• Indiana – 273,520

• Kentucky – 180,160

• Louisiana – 179,840

• Maryland – 259,520

• Michigan – 409,680

• Mississippi – 116,720

• Missouri – 248,240

• Nevada – 135,440

• New Jersey – 368,560

• New Mexico – 84,000

• New York – 775,760

• North Carolina – 496,800

• Ohio – 572,560

• Oklahoma – 164,800

• Oregon – 172,080

• Pennsylvania – 627,200

• South Carolina – 248,800

• Tennessee – 324,800

• Virginia – 396,400

• Washington – 384,400

  
  

Why Tier 2 matters: These states represent the hidden middle of the U.S. ME/CFS crisis. With rates near 4%, states like New York (~776,000) and Pennsylvania (~627,000) carry burdens equal to or greater than many Tier 1 states by sheer population size. The key difference is that more patients are at least partially recognized in academic hubs, keeping the numbers just below Tier 1 thresholds.

Tier 3 States (2%)

Better research hubs, stronger diagnostic awareness, stabilizing supports

• Alaska – 14,400

• Connecticut – 142,040

• Idaho – 40,640

• Iowa – 63,200

• Kansas – 61,360

• Maine – 53,040

• Massachusetts – 142,000

• Minnesota – 119,760

• Montana – 23,680

• Nebraska – 40,640

• New Hampshire – 55,440

• North Dakota – 15,920

• Rhode Island – 42,000

• South Dakota – 18,720

• Utah – 78,960

• Vermont – 26,400

• West Virginia – 35,840

• Wisconsin – 117,600

• Wyoming – 11,520

Why Tier 3 matters: While prevalence is lower at ~2%, these states prove what happens when diagnostic literacy and social supports exist. Massachusetts (~142,000) benefits from early access to research-driven care, while states like Minnesota and Wisconsin integrate stronger disability supports. Patients are still sick, but fewer fall into complete invisibility.

Why These Estimates Matter

Researchers such as Dr. Ron Davis (Stanford) and Dr. Anthony Komaroff (Harvard) argue that ME/CFS prevalence has been systematically undercounted, with recent findings showing that up to 44–51% of Long COVID patients meet ME/CFS criteria【Jason et al., 2023; Davis et al., 2023】.

Dr. Amy Proal (PolyBio) emphasizes that viral persistence and immune activation are biological drivers of ME/CFS, confirming that these corrections are grounded in science, not just statistics【Proal, 2022】.

By anchoring state-level estimates at ~14.4M and harmonizing them with the validated national range, CYNAERA ensures that policymakers, researchers, and advocates have credible, actionable numbers for funding, trial design, and disability support.

Range Discussion: 

Current government and advocacy estimates for ME/CFS swing by as much as 10–20 million cases, a level of uncertainty that would be unthinkable for conditions like MS or lupus. CDC's official “1.5–2.5M” figure and advocacy estimates of “10–30M” leave policymakers without actionable numbers. By contrast, the CUCC™ framework yields a range of 15–21.5M, narrowing error to ~6.5M. This reduced uncertainty is not a statistical luxury, it is a policy imperative. Funding, disability coverage, and clinical trial recruitment all depend on working with a range that is epidemiologically credible and politically defensible.

Range Comparison: ME/CFS Prevalence Estimates

• CDC Legacy (pre-COVID): 1.5–2.5M → Swing = 1.0M (67% swing)

• CDC Long COVID–derived (2024): 7.9–8.8M → Swing = 0.9M (12% swing)

• Advocacy Orgs (Solve, PLRC, etc.): 10–30M → Swing = 20M (200% swing)

• CUCC™ Harmonized (2025): 15–21.5M → Swing = 6.5M (44% swing)

State-Level to Global: A Shared Terrain Logic

Just as U.S. states fall into Tier 1, Tier 2, and Tier 3 prevalence bands, CYNAERA’s Global-CCUC™ model stratifies nations in the same way. Countries with severe environmental volatility and poor diagnostic infrastructure (e.g., the U.S., Brazil, Philippines) are Tier 1, while nations with robust healthcare and disability systems (e.g., Norway, Japan, Germany) fall into Tier 3.

This shared terrain logic confirms that ME/CFS is not simply a biomedical puzzle, it is a bio-socio-environmental crisis that reflects where people live, work, and attempt to heal.

Conclusion: From Invisible to Actionable

For decades, state-level prevalence of ME/CFS has been hidden behind outdated federal assumptions and biased diagnostic systems. The CYNAERA tiered framework changes that. By weighting race, environment, labor protections, and diagnostic literacy, it restores visibility to the 14.4 million Americans who meet ME/CFS criteria today, an estimate that finally aligns with the national CUCC™ range of 15–21.5 million.

These numbers are not abstract. They are millions of patients navigating a daily terrain of illness, dismissal, and survival. For policymakers, the tiered map is a call to allocate funds and build clinics where terrain risk is highest. For researchers, it is a roadmap for designing trials that reflect real-world populations, not skewed cohorts. For advocates, it is proof that invisibility is not destiny, it is the outcome of flawed math, and it can be corrected.

Just as the Global-CCUC™ framework shows us how terrain shapes international prevalence, the U.S. tiered model proves the same at home. The lesson is simple: where acces gaps, environmental volatility, and dismissal converge, disease flourishes in the shadows. The work now is to ensure that both the science and the systems no longer leave these patients unseen.

References

1. Jason, L.A. et al. (2023). Prevalence of ME/CFS in Long COVID populations. BMC Medicine.

2. Komaroff, A.L. (2021). ME/CFS and Long COVID: Shared mechanisms and overlapping biology. Frontiers in Medicine.

3. Davis, R. et al. (2023). Genetic susceptibility and diagnostic overlap in ME/CFS and Long COVID. Nature Medicine.

4. Proal, A. (2022). Viral persistence and immune dysregulation in post-viral illness. PolyBio Research Foundation.

5. Sabin, J.A. et al. (2009). Physicians’ implicit attitudes about race and quality of medical care. Journal of Health Care for the Poor and Underserved.

6. CDC (2023). Household Pulse Survey – Long COVID Data. National Center for Health Statistics.

7. CYNAERA (2025). Global-CCUC™ Framework for ME/CFS Prevalence. CYNAERA White Paper Library.

Author’s Note:

All insights, frameworks, and recommendations in this white paper reflect the author's independent analysis and synthesis. References to researchers, clinicians, and advocacy organizations acknowledge their contributions to the field but do not imply endorsement of the specific frameworks, conclusions, or policy models proposed herein. This information is not medical guidance.

Applied Infrastructure Models Supporting This Analysis

Several standardized diagnostic and forecasting models developed through CYNAERA were utilized or referenced in the construction of this white paper. These tools support real-time surveillance, economic forecasting, and symptom stabilization planning for infection-associated chronic conditions (IACCs).

Note: These models were developed to bridge critical infrastructure gaps in early diagnosis, stabilization tracking, and economic impact modeling. Select academic and public health partnerships may access these modules under non-commercial terms to accelerate independent research and system modernization efforts.

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Learn More: https://www.cynaera.com/systems

About the Author 

Cynthia Adinig is an internationally recognized systems strategist, health policy advisor, and the founder of CYNAERA, an AI-powered intelligence platform advancing diagnostic reform, clinical trial simulation, and real-world modeling for infection-associated chronic conditions (IACCs). She has developed 400+ Core AI Frameworks, 1 Billion + Dynamic AI Modules. including the IACC Progression Continuum™, US-CCUC™, and RAEMI™, which reveal hidden prevalence, map disease pathways, and close gaps in access to early diagnosis and treatment.

Her clinical trial simulator, powered by over 675 million synthesized individual profiles, offers unmatched modeling of intervention outcomes for researchers and clinicians.

Cynthia has served as a trusted advisor to the U.S. Department of Health and Human Services, collaborated with experts at Yale and Mount Sinai, and influenced multiple pieces of federal legislation related to Long COVID and chronic illness. 

She has been featured in TIME, Bloomberg, USA Today, and other leading publications. Through CYNAERA, she develops modular AI platforms that operate across 32+ sectors and 180+ countries, with a local commitment to resilience in the Northern Virginia and Washington, D.C. region.