Observations from an online workshop on ‘ME research and underserved groups’, which took place in July 2024, have been published in the journal ‘Health Expectations’.
The workshop was part of a series organised by Monica Bolton – the lead author on the recent publication, who is a ‘person with ME’.
Key observations from the workshop were that:
- There is a low prevalence of ME/CFS diagnosis in underserved groups.
- People from underserved groups with ME/CFS face barriers to health care including stigma, lack of knowledge, and lack of power.
- There is limited research on ME/CFS in people from underserved groups.
- Those with ME/CFS who are also from underserved groups may be “doubly disadvantaged”.
What are underserved groups?
Underserved groups are populations that receive less than adequate access to resources, services, or representation, often due to factors like ethnicity, sexuality, geographic location, or social and economic position (typically measured using income, education, and occupation), leading to disparities in health, education, and other areas.
Where people belong to more than one underserved group, they may face multiple disadvantages – This relates to “intersectionality”, a term coined by Kimberlé W. Crenshaw in 1989.
“Intersectionality is a metaphor for understanding the ways that multiple forms of inequality or disadvantage sometimes compound themselves and create obstacles that often are not understood among conventional ways of thinking”.
Key challenges faced by underserved groups with ME/CFS in relation to healthcare and research.
Three key challenges for underserved groups were identified within the workshop:
- Stigma.
People with ME/CFS often face stigma which can prevent adequate assessments and care – for example, those with the disease “often feel misunderstood and report facing barriers to healthcare utilization”.
Individuals from underserved groups seeking healthcare also experience stigma for a variety of reasons, including “racism, and stigma arising from social disadvantages”.
According to Bolton and colleagues, the combination of stigma relating to the ME/CFS itself, and that experienced by underserved groups, “probably contributes to the very low diagnostic rates for ME/CFS in these individuals”.
- Lack of knowledge.
In the paper, it is stated that the “lack of knowledge about ME is widespread amongst health care professionals, amongst many communities and policy makers” – this contributes to delayed diagnosis or lack of diagnosis, as seen in underserved groups.
Additionally, although research has consistently shown evidence of biological abnormalities in people with ME/CFS, many people – including health professionals, still wrongly perceive the disease is psychological in nature.
- Lack of power.
“Despite the high cost to government and to society, post-viral illnesses and fatigue appear to be a low priority for those in power”, therefore there is a lack of power to influence health and research agendas.
Additionally, for people with ME/CFS, communication with health professionals is challenging due to fatigue and cognitive impairment – symptoms are also complex and hard to describe.
Those from underserved groups may face additional barriers arising from systems of power or oppression – such as institutional racism, for example, clinicians may be “more likely to identify ME/CFS in White women as it is more consistent with the prototypical or exemplar cases”.
The authors state that all three factors appear to be significant in preventing research funding and healthcare provision for ME/CFS.
Why is it important to consider underserved groups in ME/CFS research?
When participants in research studies are not representative of the whole population of interest – including underserved groups, findings may not reflect what is happening in all those with a disease. Subsequently, any guidelines for clinical practice developed on this evidence may not fully represent diversity in needs.
Often in ME/CFS research, most people included in studies are white women – for example, in the DecodeME study, which is the largest study in the world, 83.5% of the respondents were female while 16.5% were male, and 96.7% of the study population self-reported their ethnicity as “White”.
While this may reflect that ME/CFS is more common in white women compared with other groups of the population, it is essential to ensure that research into ME/CFS is carried out using diverse population samples to assess whether – and why, the disease may be going unrecognised or presenting differently in different groups.
Why are those from underserved groups underrepresented in ME/CFS research?
Those with ME/CFS who are in underserved groups are often not included in research for three main reasons:
- They do not have a diagnosis of the disease despite having the symptoms. For example:
- There may be “racial disparities in the diagnostic process for ME/CFS”; one study found that compared with “non-White” respondents, “White” respondents were significantly more likely to have an ME/CFS diagnosis.
- Men with ME/CFS – who are also underrepresented in research, may also be less likely to receive a diagnosis of ME/CFS; health professionals either do not recognise the symptoms of the disease, or misdiagnose ME/CFS as another illness such as depression, chronic migraine, irritable bowel syndrome or insomnia.
- The recruitment methods used do not reach underserved groups; traditional recruitment methods – which do not always consider the needs, or social and cultural norms of underserved groups, do not always result in diverse study samples.
- The study methods are inaccessible for example, for those with severe and very severe ME/CFS.
How might researchers increase inclusivity of ME/CFS research for underserved groups?
Patient and public involvement.
Patient and public involvement (PPI) in research is defined by NIHR as “research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them.”
The appropriate use of PPI in in research can help to make studies more relevant and useful to people with the disease, carers and the public. In this instance, PPI can be used to identify how to improve recruitment strategies for those with ME/CFS in underserved groups. It can also be used to highlight ways researchers can make studies more accessible – especially for those with severe and very severe ME/CFS.
DecodeME is one example of where PPI has been used successfully in ME/CFS research – here, there is a PPI steering group which meets at least every three months to discuss topics such as the questions in the questionnaire, clarity and accessibility of the consent form, and of the study website.
It is worth noting that researchers are often limited by the resources – mainly finances and timescale, available to them for PPI.
Also invite those with symptoms – rather than just a confirmed diagnosis, of ME/CFS to take part in studies.
One of the issues in ME/CFS research that only recruits people with a diagnosis of ME/CFS, is that many people from underserved groups do not actually have a diagnosis of the disease despite experiencing the symptoms.
The authors of the paper suggest that rather than advertising for participants with a diagnosis of the disease, studies could invite those with symptoms of ME/CFS, and then assess them against ME/CFS diagnostic criteria such as the Canadian Consensus Criteria. Then, only those who meet the criteria would be included in the study.
It is important to note that if researchers were to do this, they would need to ensure that participants had the correct support in place following the diagnosis.
Conclusion
In their conclusion, Bolton and colleagues call for government funding bodies to provide strategic funding to correct years of systemic under-resourcing – something ME Research UK also called for in a response to the DHSC interim delivery plan on ME/CFS in 2023. The authors also emphasise the need to implement widespread educational initiatives – which research has shown to have a positive impact on knowledge, to alert health care professionals and the public to the possible presence of ME/CFS in people from underserved groups.
ME Research UK notes that consideration of intersectionality, and the role it plays in both ME/CFS research, and in health care relating to ME/CFS, is essential.
