This research article discusses the barriers faced by under-served groups in accessing healthcare and participating in research regarding ME/CFS. It is based on an online workshop held in July 2024, which highlighted the challenges faced by these groups and called for urgent systemic changes.
Bolton et al (2025)
Summary
- The workshop identified 3 key challenges that contribute to the lack of research and support for under-served groups with ME:
- Stigma:
- ME is often dismissed as psychological, leading to delayed or denied medical care.
- Stigma is particularly high for people from ethnic minorities and low-income backgrounds.
- Lack of Knowledge:
- Many healthcare providers and policymakers are unfamiliar with ME.
- Misconceptions lead to misdiagnosis or lack of diagnosis, especially among socially disadvantaged groups.
- Lack of Power:
- ME patients struggle to advocate for themselves due to the illness's debilitating nature.
- Under-served communities have even less influence in shaping healthcare policies and research priorities.
- Stigma:
- This led the authors to recommend 4 key areas for improvement:
- Education and Awareness: Training for healthcare professionals and public awareness campaigns.
- Specialist Clinics: Increase access to ME-specific NHS services.
- Research Investment: Prioritise ME research funding to develop diagnostic tools and treatments, and ensure studies include participants from under-served groups.
- Government Action: Implement and fund the UK’s cross-government ME delivery plan.
Extracts
Abstract
Public involvement in research and other initiatives for myalgic encephalomyelitis (ME) (also known as chronic fatigue syndrome) has been crucial in raising awareness of the disease and exposing inadequate healthcare and research funding.
An online workshop on ME research and under-served groups took place in July 2024, organised by the first author, a person with ME. The workshop illustrated very low prevalence and thus barriers to healthcare as well as limited research in people from under-served groups, who appear doubly disadvantaged by their illness and their socioeconomic and/or ethnic background.
Three particular challenges were suggested to account for these disparities: stigma, lack of knowledge (within the general public, amongst healthcare workers and policy makers) and lack of power, particularly in improving current deficiencies. These challenges appear to be significant factors in preventing increased research funding and healthcare provision for ME generally.
We call on government and funding bodies to provide strategic funding to correct years of systemic under-resourcing. Widespread educational initiatives should alert healthcare workers and the public to the possible presence of ME in people from under-served groups. Research is now urgently needed to understand the barriers to diagnosis and care for people with this illness, particularly for those from under-served groups.
Conclusion
Ongoing stigma, lack of knowledge, and particularly of power are preventing adequate provision of health care and research for people with ME.
The consequences of this are particularly stark for those from under-served groups who are less likely to be diagnosed with ME and almost never involved in research.
Government initiatives are needed, including the long-awaited delivery plan which aims to improve both care and research. All initiatives need to be backed by adequate finance. Strategic funding is called for, directed at ME research, widespread educational initiatives and adequate funding of health and social care.
The perception of ME needs to change, from a disease where only those able to advocate for themselves are diagnosed, to acceptance that ME can be highly disabling and likely to affect under-served groups particularly hard.
We did not intend this paper to be just a long list of complaints but aim to show how people with ME could join the decision-making process.