Estimates of ME/CFS Prevalence Soar in England
After 40 years, why isn’t there a reliable test? Anybody?
A new peer-reviewed article in the Springer Nature magazine BMC Public Health just reported that the prevalence of ME/CFS in England (not all of the UK) is approximately four times higher than previously estimated. How could this have happened? Unequal access to medical care that could result in an ME/CFS diagnosis is the conclusion reached by University of Edinburgh researchers Gemma Samms and Chris Pointing. Those most likely to obtain a diagnosis of ME/CFS are middle-class, younger than 60, female and white. (1)
Please note: Samms and Pointing are not counting those most likely to have ME/CFS, but only those most likely to obtain a diagnosis.
These investigators relied on the Hospital Episode Statistics (HES) data that are collected by the British National Health Service (NHS). NHS organizes these data geographically in Integrated Care Boards or ICBs, and I promise that’s the last British bureaucratic abbreviation I’ll introduce here. (1)
Samms and Pointing described ME/CFS “is a chronic multi-system disorder resulting in very poor health-related quality of life and from which patients only rarely recover.” Estimates of prevalence vary over time and from country to country, but they described ME/CFS as “fairly common.” For U.S. prevalence, Samms and Pointing cited the 2015 Institute of Medicine survey that concluded the U.S. prevalence is 1.3% of the population. (2) Although they pointed out that the U.S. patients who made up that 1.3% in 2015 have “ongoing symptoms,” they didn’t cite an updated reference or prevalence stat.
“Historically, ME/CFS diagnosis in the UK has used various criteria, all with serious or very serious limitations,” Samms and Pointing reported. “Revised diagnostic criteria were introduced in 2021 for use in NHS England and Wales. Uneven and incorrect application of these criteria results in about half of all cases referred to ME/CFS Specialist services not meeting diagnostic criteria.” (1)
If NHS physicians are misdiagnosing people who don’t have ME/CFS and sending them to specialists, what’s happening to the people who actually have ME/CFS and are misdiagnosed as having something else? Samms and Pointing didn’t address this possibility directly, although they did note, “These results reveal deficiencies in ME/CFS diagnosis across different groups in England.” (1)
The biggest variable they identified in diagnosis is gender, with women being diagnosed “two- to five-times more often than men and also tending to report more severe symptoms.” Although they also pointed out that ethnicity is another important variable in diagnosis.
In their present study, Samms and Pointing used England-specific “Hospital Episode Specific” (HES) statistics, so it’s not a UK-wide study, as they acknowledge. “Nevertheless, when stratified by age, self-reported ethnicity and gender, the data reveals substantial population variation in ME/CFS diagnosis.” (1)
Let’s skip right over the “Methods” portion of this paper, which is composed of statistics, damned statistics, and somewhat obnoxious “definitions” of numerous ethnic groups.
The first item in the “Results” section of this paper is titled, “Prevalence by age, deprivation and gender.”
As of early October 2023, 100,055 people in England had been assigned the NHS code used for ME/CFS. Of that group, the female-to-male ratio was 3.88 to 1. (1)
In terms of age, the peak diagnosis for women was 50 years of age and for men, 60. “In individuals’ fourth and fifth decades the F/M ratio peaked at an exceptionally large value, approximately 6-to-1,” they also pointed out.
The economic status of diagnosed individuals was calculated using the “Index of Multiple Deprivation” (“IMD”—sorry, another Britishism I didn’t see coming). “White prevalence was 4.9-fold higher than other-than-white prevalence (0.24% vs 0.049%, respectively),” Samms and Pointing report. “... ME/CFS prevalence of other-than-white British individuals was between one-tenth and one-third that for white British. Those with Chinese, Asian/Asian British or Black/Black British ethnicity were 11%, 11%-19%, or 10%-35%, respectively, less likely to be diagnosed with ME/CFS. The low prevalence of ME/CFS for other-than-white ethnicity categories is more profound than for other diseases, for example fibromyalgia and clinical depression. ... In summary, ME/CFS diagnosis in England is highest among older, white females, and lowest among younger other-than-white males; the variation is 50-fold between these three categories.” (1) [Emphasis added.]
Meanwhile, other stats concerning specific localities are described, and I encourage anyone who’s interested to read this open-access study. (1)
Following even more calculations and extrapolations, Samms and Pointing wrote that, “In summary, we suggest that the 2023 UK lifetime prevalence of ME/CFS diagnosed using stringent criteria is approximately 320,000 for females and 84,000 for males (i.e., 0.92% and 0.25%, respectively).”
This estimate is four times larger than the 2023 statistic of 100,055 total cases of ME/CFS in England. (1)
They concluded, “These results reveal deficiencies in ME/CFS diagnosis across different groups in England. To address these deficiencies, improved training of medical professionals should be available and research into identifying accurate diagnostic tests should be prioritised.” [Emphasis added.] They continued, “Even when diagnosed, there is no curative therapy for ME/CFS, only symptom management.”
Being assigned the National Health Service’s diagnostic code for ME/CFS, however, is helpful to patients in that it fights the “delegitimization” of the illness, improves patient/physician interactions, enables patients to apply for disability compensation, and helps patients find support and participate in clinical trials for potential treatments. (1)
I am ignoring Samms and Pointing’s call for further education of medical professionals, because it’s been shown more than once that even when such educational opportunities are presented, very few medical professionals have any interest in participating. (3, 4)
However, their emphasis on prioritizing the development of an accurate test for ME/CFS, while echoing those of other investigators, is the most important conclusion of this paper—even more important than the finding that the prevalence of ME/CFS is at least four times higher previous estimates.
If you’re interested in exploring my books on ME/CFS, here they are. All but What Really Killed Gilda Radner? are available as Kindle and paperback versions on Amazon.com: Ampligen: The Battle for a Promising ME/CFS Drug. June 2, 2022. AMERICA'S BIGGEST COVER-UP: UPDATED 2ND EDITION 50 More Things Everyone Should Know About the Chronic Fatigue Syndrome Epidemic and Its Link to AIDS. March 9, 2022. 50 Things You Should Know About the Chronic Fatigue Syndrome. January 1, 1993. St. Martin’s Press, NYC, NY. What Really Killed Gilda Radner?: Frontline Reports on the Chronic Fatigue Syndrome Epidemic. January 1, 1991.
BIBLIOGRAPHY
1. Gemma Louise Samms & Chris P. Pointing. “Unequal access to diagnosis of myalgic encephalomyelitis in England.” BMC Public Health 25, 1417 (2025). April 22, 2025. https://doi.org/10.1186/s12889-025-22603-9
2. Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome; Board on the Health of Select Populations; Institute of Medicine. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. 2015.
3. Baxter, H.; Speight, N.; Weir, W. “Life-Threatening Malnutrition in Very Severe ME/CFS”; Healthcare 2021; 9: 459. https:// doi.org/10.3390/healthcare9040459
4. Unger, E.R.; Lin, J.S.; Brimmer, D.J. et al. “CDC Grand Rounds: Chronic Fatigue Syndrome—Advancing Research and Clinical Education”; MMWR Morb Mortal Wkly Rep 2016; 65: 1434–1438. DOI: http://dx.doi.org/10.15585/ mmwr. mm655051a4