Possible Racial Disparities in the Diagnosis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), 2025, Jones et al

Possible Racial Disparities in the Diagnosis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

Chloe Lisette Jones, Jarred Younger

[Line breaks added]

Abstract
Myalgic encephalomyelitis (ME/CFS) a chronic, disabling illness with no established etiopathology. It has been indicated in some population-based studies that Black and ethnic minority populations are underdiagnosed with ME/CFS.

The aims of the present study were to (1) identify the agreement between receiving an ME/CFS diagnosis and meeting diagnostic criteria, (2) identify the demographic characteristics associated with receiving a diagnosis, and (3) explore patient satisfaction with healthcare. Self-reported medical history and symptoms were collected via online survey from respondents with and without fatigue. The agreement between self-reporting an ME/CFS diagnosis and meeting the Center for Disease Control’s (CDC) ME/CFS criteria or Institute of Medicine (IOM) criteria was assessed with Cohen’s kappa. Patient characteristics predicting a physician diagnosis were analyzed with logistic regression. Associations between diagnosis, demographics, and healthcare satisfaction were assessed with chi-square tests of independence.

There were 1110 responses. The agreement between meeting ME/CFS criteria and reporting an ME/CFS diagnosis was fair (CDC: κ = 0.29; SE = 0.02; IOM: κ = 0.28, SE = 0.03). White respondents had 2.94 greater odds of being diagnosed with ME/CFS than non-White respondents. Having an ME/CFS diagnosis was associated with dissatisfaction with healthcare (χ2 (3, N = 1063) = 14.17, p = 0.003). The findings suggest racial disparities in the diagnostic processes for ME/CFS.

Link | PDF (International Journal of Environmental Research and Public Health) [Open Access]

 

The study actually did more than it says on the tin:

More than 10% of individuals with ME/CFS reported not having a doctor overseeing their health problem but wanting one, and approximately 45% of those with ME/CFS reported being unsatisfied with their doctor/health care professional. Interestingly, this pattern was not replicated when comparing those who met ME/CFS criteria and those who did not. This suggests that barriers to care and satisfaction with care may be affected directly by the ME/CFS diagnosis itself, rather than the nature of the symptoms. As the majority of participants in this sample presented with comorbidities, reflective of the ME/CFS population, future research should investigate the impact of having an ME/CFS diagnosis on the overall provision of healthcare services to an individual. Specific mechanisms (e.g., severity of presentation, demographics, stigma in healthcare settings, comorbid conditions, etc.) underlying the association between an ME/CFS diagnosis and healthcare outcomes should be further studied.

(…)

5. Conclusions
Among a large sample of individuals with fatigue, agreement between meeting ME/CFS criteria and reporting an ME/CFS diagnosis was only fair. White respondents had significantly greater odds of being diagnosed with ME/CFS than non-White respondents. These findings suggest racial disparities in the diagnostic processes for ME/CFS. Furthermore, diagnosis of ME/CFS, but not meeting ME/CFS criteria, was associated with poorer satisfaction with healthcare, suggesting the diagnosis itself may present barriers in the management of symptoms.

 

Seems a rather weak suggestion when it's obvious that more severe cases are more likely to be diagnosed, even if only slightly. Although there is definitely a case to be made that physicians' attitudes likely play a role in this, but even that can be explained by worse illnesses having worse consequences. So in this case it's not the diagnosis itself, but deep-seated neuroses about it within the culture of the medical profession.

 

@rvallee they discussed this

 

Maybe it's not the diagnosis, but the mental habits of the doctors. Doctors that give ME diagnoses think differently than ones who don't. There are probably doctors who quickly jump to an ME diagnosis (maybe false positive) and others who never make an ME diagnosis, and not many who carefully consider the facts in each case. Maybe the majority are simply unaware of how to diagnose ME.

 

ME Research UK:

Jarred Younger – who is currently working on research funded by ME Research UK, and Chloe Lisette Jones have published a paper in the "International Journal of Environmental Research and Public Health" which considers which characteristics – including self-reported “race”, are associated with receiving an ME/CFS diagnosis.

Read more about what the researchers found here: https://tinyurl.com/y2kep4ht

Read about Prof. Younger's ME Research UK funded work here: https://tinyurl.com/374m85kj