Prof. 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.
The researchers analysed 1,110 responses to an online survey, and found that compared with “non-White” respondents, “White” respondents were significantly more likely to have an ME/CFS diagnosis.
It is essential to note that 95% (1,787) of the respondents to the survey were “White” – this means that it was not possible for the researchers to consider “non-White” ethnic groups separately, rather the diverse groups had to be analysed together.
While these findings give an indication that there are differences in rates of ME/CFS diagnosis between “White” and “non-White” populations, more research is needed to investigate ME/CFS – including diagnosis rates, within different “racial” groups.
The researchers suggest several mechanisms for the “racial disparities” observed in their study which future research should investigate further:
- ME/CFS may be more likely to affect those of European descent.
- However it is worth noting that previous research has suggested that “people from the black and minority ethnic population are 2–3 times more likely suffer from ME/CFS than white groups”
- Those who receive a diagnosis might be those who have greater self-advocacy and persistence in health care settings.
- Diagnosis of ME/CFS relies on clinical judgement – “clinicians may be more likely to identify ME/CFS in White women as it is more consistent with the prototypical or exemplar cases”.
- Regrettably, this has been seen for many other diseases and conditions, for example; in her book “Systemic: How racism is making us ill“, Science Journalist Layal Liverpool recalls how her “classic case of eczema” went undiagnosed for years likely due to the fact that the clinicians she saw were not as used to seeing how it manifests on darker skin.
As with all ME/CFS research, future studies into racial disparities in ME/CFS should include the appropriate involvement of those with lived experience into the design, implementation, and interpretation of results.
