Trial Report Classification Accuracy & Description of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in an Integrated Health Care System 2006–2017, 2024, Liles

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https://www.thepermanentejournal.org/doi/full/10.7812/TPP/23.170

Classification Accuracy and Description of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in an Integrated Health Care System, 2006–2017

Elizabeth G Liles, MD, MCR https://orcid.org/0000-0002-9669-9252 Beth.G.Liles@kpchr.org, Stephanie A Irving, MHS, Padma Koppolu, MPH, Bradley Crane, MS, Allison L Naleway, PhD, Neon B Brooks, PhD, Julianne Gee, MPH, Elizabeth R Unger, PhD, MD, and Michelle L Henninger, PhD
Published Online: June 19, 2024

Abstract

Introduction
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic illness characterized by marked functional limitations and fatigue. Electronic health records can be used to estimate incidence of ME/CFS but may have limitations.

Methods
The authors used International Classification of Diseases (ICD) diagnosis codes to identify all presumptive cases of ME/CFS among 9- to 39-year-olds from 2006 to 2017. The authors randomly selected 200 cases for medical record review to classify cases as confirmed, probable, or possible, based on which and how many current clinical criteria they met, and to further characterize their illness. The authors calculated crude annual rates of ME/CFS coding stratified by age and sex using only those ICD codes that had identified confirmed, probable, or possible ME/CFS cases in the medical record review.

Results
The authors identified 522 individuals with presumptive ME/CFS based on having ≥ 1 ICD codes for ME/CFS in their electronic medical record. Of the 200 cases selected, records were available and reviewed for 188. Thirty (15%) were confirmed or probable ME/CFS cases, 39 (19%) were possible cases, 119 (60%) were not cases, and 12 (6%) had no medical record available. Confirmed/probable cases commonly had chronic pain (80%) or anxiety/depression (70%), and only 13 (43%) had completed a sleep study. Overall, 37 per 100,000 had ICD codes that identified confirmed, probable, or possible ME/CFS. Rates increased between 2006 and 2017, with the largest absolute increase among those 30–39 years old.

Conclusions
Using ICD diagnosis codes alone inaccurately estimates ME/CFS incidence.
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Indeed. No surprises there

And they didn't even look for missed ME diagnoses, they only checked if people diagnosed with ME fit ME diagnostic criteria based on the patchy info on their medical records. Spoiler alert: most didn't (but no way of telling if that was because they were misdiagnosed or if there just wasn't enough detail in their medical records to make the call)

They also looked at what comorbid conditions were diagnosed in people with an ME diagnosis. It would have been more interesting to pull out people with those and similar conditions (FND, depression, anxiety, IBS, etc) but without an ME diagnosis and see how many of them would better fit the ME criteria than the diagnosis they got

Preferably not just via chart review - given how poor the records are - but by contacting and interviewing patients though ethics boards seem to be reluctant to permit recontacting patients. To a degree that's understandable, it can be disconcerting to get a call out of the blue effectively questioning your diagnosis. But I think that could be managed and for the sort of poorly understood and/or poorly treatable conditions this would apply to it may even be that many patients would welcome a thorough review of their case

 

What is *killing* me is just looking at the date this paper published, and look at the year range that was looked at, 2006-2017.

One may argue that we may reach Pluto faster than this study.