Preprint Underdiagnosis of myalgic encephalomyelitis/chronic fatigue syndrome-like illness in a large integrated healthcare system, 2024, Wood, Unger et al.

Underdiagnosis of myalgic encephalomyelitis/chronic fatigue syndrome-like illness in a large integrated healthcare system — Kaiser Permanente Northern California, 2022-2023
Mariah Wood; Nicole Halmer; Jeanne Bertolli; Laura B. Amsden; Joshua R. Nugent; Jin-Mann S. Lin; Gretchen Rothrock; Joelle Nadle; Shua J. Chai; Jamila H. Champsi; James Yang; Elizabeth R. Unger; Jacek Skarbinski

BACKGROUND
Surveillance of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a chronic, debilitating multisystem illness, is challenging because ME/CFS can be under-recognized in healthcare settings.

METHODS
Using a population-based panel study of 9,820 adult members of Kaiser Permanente Northern California (KPNC), a large, integrated healthcare system, we compared survey-defined ME/CFS-like illness with presence of an ME/CFS diagnosis in the electronic health record (EHR) to evaluate ME/CFS underdiagnosis.

RESULTS
Of those with survey-defined ME/CFS-like illness, an estimated 97.8% (95% confidence interval [CI] 97.1%-98.4%) did not have an ME/CFS diagnosis in the EHR. The group without EHR diagnosis was younger, less likely to identify as white non-Hispanic, and more likely to have developed fatigue in the past three years than the EHR diagnosed group. Both diagnosed and undiagnosed ME/CFS-like illness groups had significantly impaired physical, cognitive, and social functioning, and significantly worse mental health and anxiety than those without ME/CFS-like illness.

CONCLUSIONS
ME/CFS is underdiagnosed in the Kaiser Permanente Northern California healthcare system. Enhanced syndromic surveillance that characterizes patients with ME/CFS who have not been diagnosed has the potential to increase timely recognition of ME/CFS.


Link | PDF (Preprint: MedRxiv) [Open Access]

 

There’s probably a severity bias in who gets diagnosed. And also, with the majority of doctors in the healthcare system, having an ME diagnosis basically at best is an equivalent of having no diagnosis, at
worst an equivalent to having a “psychosomatic disease” diagnosis.

 

"All of questions 7 through 10 must be answered with one of the responses in bold to meet inclusion criteria for post-exertional malaise"

7. During the past 4 weeks, have you been unusually fatigued or unwell for at least one day after exerting yourself in any way?

• Yes
• No

8. During the past 4 weeks, how often have you had unusual fatigue after exertion?

• A little of the time
• Some of the time
• A good bit of the time
• Most of the time
• All of the time

9. During the past 4 weeks, how bad was your unusual fatigue after exertion?

• Very mild
• Mild
• Moderate
• Severe
• Very severe

10. How long have you had unusual fatigue after exertion?

• Less than 6 months
• 6 months up to 1 year
• 1 year up to 3 years
• 3 years up to 5 years
• 5 years up to 10 years
• 10 or more years

 

Damn. If I don’t get bad fatigue from PEM, does that mean I don’t fit the IOM anymore?

 

According to the questionnaire used by this research team.

The IOM defines it as "Post-exertional malaise (prolonged exacerbation of a patient’s baseline symptoms after physical/cognitive/orthostatic stress; may be delayed relative to the trigger)".

 

I think they were wrong to use the term "fatigue", since that's poorly defined, and the definition or recognition differs between people. My journal doesn't use the word "fatigue". "Lethargy", "sluggish", "lousy" and "bleh" are more common. Note that I can't even find one word that fits every occurrence. Their acceptance of "unwell" for question 7 was good, and should have been applied to the others. Hmmm, I suppose I could have used "unwell" in my journal, but the subtle differences in my choices might be useful data.

 

I have no direct insight but from my perspective of being a physician/scientist trying to define what makes ME/CFS a useful concept this sort of questionnaire approach also seems hopeless.

My understanding of the PEM phenomenon has nothing to do with it having to be regular or often. I tend to think of the person with ME/CFS struggling day by day to achieve a few things they have got used to managing and then, unpredictably, 'crashing' at intervals of weeks or months. There may be daily payback from doing the things that can be managed but I don't see that as necessarily key to ME/CFS. And perhaps the most crucial thing is the unpredictability either for the individual or between individuals. Each person may tell a different story but there is something common to all. Also, the requirement for 6 months is to me less about needing to be ill for 6 months to qualify and more about it taking 6 months observation to be sure that the fluctuating pattern of the illness is of the ME/CFS sort.

 

My letter to the CDC concerning Kaiser Permanente still recommending GET | Science for ME

(see tag 'kaiser permanente')

 

I'm a patient at CA Kaiser Permanente. My doctor is Dr. James Yang, one of the people credited in the paper. This is my understanding of the situation:

WebDog had extensive contact with Dr. Steve Olson. Dr. Steve Olson created an "ME/CFS Consultative Service" and also caused some administrative changes. He then retired in about 2019-2020. He has an interview with David Tuller where he talks a little bit about what he accomplished.

Currently, this Consultative Service is 5 or 6 part-time doctors. It only serves people in CA. Wait times are too long, 3 months for an initial appointment. It is now run by Dr. James C Yang. I would say that the care that patients have received at the Consultative Service is kind of decent. They definitely understand the basics of pacing and are willing to prescribe basic medications. They won't do anything super out-there or expensive though.

But most CA Kaiser ME/CFS patients don't know this Consultative Service exists. Their doctors don't know it exists and don't refer their patients there. And the service is obviously not big enough to see the amount of patients they need to. I've talked to a lot of ME/CFS Kaiser patients and they usually describe horrible care, rheumatologists who tell them it's basically the same as fibromyalgia, being denied a diagnosis, being referred to psych, being encouraged to try physical therapy, no recognition of dysautonomia or MCAS or other co-occurring conditions, etc.

I could conceivably talk to Dr. James Yang about this study the next time I see him, not sure what would be useful to remark upon though.