Estimating Prevalence, Demographics, and Costs of ME/CFS Using Large Scale Medical Claims Data and Machine Learning

Abstract

Techniques of data mining and machine learning were applied to a large database of medical and facility claims from commercially insured patients to determine the prevalence, gender demographics, and costs for individuals with provider-assigned diagnosis codes for myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS). The frequency of diagnosis was 519–1,038/100,000 with the relative risk of females being diagnosed with ME or CFS compared to males 1.238 and 1.178, respectively. While the percentage of women diagnosed with ME/CFS is higher than the percentage of men, ME/CFS is not a “women's disease.” Thirty-five to forty percent of diagnosed patients are men. Extrapolating from this frequency of diagnosis and based on the estimated 2017 population of the United States, a rough estimate for the number of patients who may be diagnosed with ME or CFS in the U.S. is 1.7 million to 3.38 million. Patients diagnosed with CFS appear to represent a more heterogeneous group than those diagnosed with ME. A machine learning model based on characteristics of individuals diagnosed with ME was developed and applied, resulting in a predicted prevalence of 857/100,000 (p > 0.01), or roughly 2.8 million in the U.S. Average annual costs for individuals with a diagnosis of ME or CFS were compared with those for lupus (all categories) and multiple sclerosis (MS), and found to be 50% higher for ME and CFS than for lupus or MS, and three to four times higher than for the general insured population. A separate aspect of the study attempted to determine if a diagnosis of ME or CFS could be predicted based on symptom codes in the insurance claims records. Due to the absence of specific codes for some core symptoms, we were unable to validate that the information in insurance claims records is sufficient to identify diagnosed patients or suggest that a diagnosis of ME or CFS should be considered based solely on looking for presence of those symptoms. These results show that a prevalence rate of 857/100,000 for ME/CFS is not unreasonable; therefore, it is not a rare disease, but in fact a relatively common one.

Systematic review and meta-analysis of the prevalence of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME)

“…We observed a high heterogeneity in the reported prevalence; as estimated, the ranges for three extraction methodologies were 1.40% (95% CI: 0.98-1.82) for the averaged prevalence, 0.39% (95% CI: 0.00-0.81) for the pooled prevalence and 0.68% (95% CI: 0.48-0.97) for the metaanalysis. Recently, one study reported a 0.67% CFS or ME prevalence and a 0.12% ME prevalence using large medical claims data with ICD (International Classification of Disease) codes [61]. Those results concur with our CFS/ ME prevalence findings of 0.68% for the entire dataset and 0.09 and 0.12% in the meta-analysis based on physician diagnosis and the Holmes definition, respectively.…”

“…Thus, case definition and diagnostic methods are the factors with the greatest influence on the results, with data ranges that vary by approximately 5-to tenfold. Following our study results, in addition to a proposal for a new diagnostic code [61,62], a pattern recognition methods to subdivide CFS patients according to symptom clusters (e.g., specific phenotype features) with the adaption of objective measurement (e.g., two cardiopulmonary exercise tests, CPETs) were suggested for more empiric definition of the condition [44].…”

Comprehensive Circulatory Metabolomics in ME/CFS Reveals Disrupted Metabolism of Acyl Lipids and Steroids

“…Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a perplexing disease, silently destroying millions of lives. Indeed, the latest prevalence rate of ME/CFS estimates that there are over 65 million suffering individuals throughout the world [1], and 35-40% of patients are male. Thus, while women are more often diagnosed, the disease is by no means rare in males.…”

Work Rehabilitation and Medical Retirement for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients. A Review and Appraisal of Diagnostic Strategies

“…These misconceptions can lead to all sorts of problems for patients including the refusal of benefits or medical retirement. ME/CFS is not a rare disease [8] and it represents a considerable public health burden with an estimated annual total value of direct and indirect economic costs to society in the US of $17 to $24 billion, including $9.1 billion attributed to lost productivity [9].…”