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

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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

 

This suggests the agreement between self-reported ME/CFS and ME/CFS as assessed by surveys such as de DePaul Symptom Questionnaires was not very high.

The authors call it 'fair' but I don't think a cohen's kappa (which ranges from -1 to +1) of 0.29 signals adequate reliability.

Almost half of those with self-reported ME/CFS diagnosis did not meet the case definitions.

This may be because case definitions set arbitrary requirements in symptoms and severity levels and people may fluctuate just above or below those thresholds.

On the other hand, if the authors had included a clinical examination, the number of self-reported cases that met ME/CFS criteria might have been even lower.

 

The authors also refer to a fibromyalgia study where 75% of self-reported cases did not meet diagnostic criteria:

Reference 14 seems to be a study by Brain Wallit and colleagues:
Three-Quarters of Persons in the US Population Reporting a Clinical Diagnosis of Fibromyalgia Do Not Satisfy Fibromyalgia Criteria: The 2012 National Health Interview Survey - PubMed

 

I like the idea of a researcher whose Brain is his Wallet.
Or his Wallet his Brain.

 

I had to check that his name was really ‘Brain’, but was disappointed to see it is only ‘Brian’.

 

Good catch

 

I wonder if the overdiagnosis in some populations has to do with physicians not being very rigorous criteria wise.

Ie. if in their head they assume CFS = chronic fatigue with no known cause and Fibro = chronic pain with no known cause, instead of actually studying the criteria.

 

I would be surprised if ignorance doesn’t drive both under- and overdiagnosis of ME/CFS and FM.

In combination with racism, prejudice, systemic discrimination and all of the other drivers of inequality and injustice.

 

But does that have anything to do with criteria and does that matter much for the doctor seeing a patient? Whenever I've visited doctors they usually tend to google things I tell them or use a different search technique (software or books), so they would naturally find the criteria as well. It's possible that some are stumbling over very vague criteria and applying those, but no doctor will be thinking "mmmh should I apply this very vague criteria which is somewhat criticised according to this source or should I only give him a diagnosis if he meets the CCC". And it doesn't sound like a very sensible approach? I think one will have to invest a portion of time into such a patient that simply doesn't exist according to the how the system works. You will have to run all the bloods, do a thorough investigation of all problems, rule out all other sorts of things and then you'd have to see the patient again, ideally a few more times, to see how things have gone. But in reality they'll see this person once and that's it or you'll not be able to remember them next time. A diagnosis or no diagnosis carries no practical implications for them and how would they know if they are overdiagnosing something?

I think they will likely look at the history of the patient and either not see a problem they can deal with or think it is not actually a problem at all. My impression is that I think it's more in the sense that these diagnoses are being seen by some as a way to discard a patient and move on to the next, because these conditions aren't taken seriously, as a consequence of how the medical system works and in other cases because the doctor genuinely doesn't know what to do. There are largely no follow-ups and these diagnosis carry 0 practical implications for the person handing them out. I guess it's a seen bit similar to a diagnosis of something like IBS. Some hand them out, others don't, others hand them out if that's what the patient wants etc, perhaps a matter of personal preference rather than applying certain criteria.

There are also differences by country and education system. In the case of ME/CFS Germany tends to use certain criteria and coding systems whilst the US uses rather different one.

Of course there's also those that hand the diagnosis out to prescribe their own treatment, be it a supplement, CBT, GET or else or to have a person be part of a clinical system, but I think that is probably more reflective of certain GPs rather than the general GP.

TLDR; My impression is that a GP is there to get a first impression of things to send you to the appropriate specialist. In the case of ME/CFS such a thing doesn't exist and as such a diagnosis carries less weight.

 

Where I live, it’s more that you’d be sent to a specialist to get properly evaluated. And in most cases, once you have a diagnosis, you’d be sent back to your GP with a letter explaining how the specialist wants the GP to “treat”/“manage” the condition you were diagnosed with.

 

Yes that's also my impression and what I wanted to say. Perhaps I didn't? I guess in "most cases" probably depends entirely on the condition. I think there are conditions that are almost exclusively handled by specialists whilst others can be handled by GPs upon advice. At least that's how it works here. For ME/CFS there is neither a specialist nor "treatment" so I guess there isn't much of a procedure to be followed.

 

As far as I understand, here most specialists even if they’ve never heard of it before, has their own opinion on “treatment” once I bring ME/CFS up, from antidepressants, to GET/CBT, to brain retraining, to supplements, to Vagus Nerve Stuff, to adderall. (The other type of specialist I’ve faced completely ignores the diagnosis and says it just means fatigue without cause but I have way more “complaints” so they must dig further).

Probably an effect of having no country or statewide guidelines to do with ME/CFS here.