Joanne Hunt – a researcher at Uppsala Universitet in Sweden and “person with severe ME/CFS”, has written an article highlighting how the lack of attention given to inequalities between different groups of people with ME/CFS – “intra-community inequalities”, for example, between people with the disease who are from different ethnic groups, leads to the experiences, viewpoints, and interests of those who are in the majority group being treated as universal.
Hunt elaborated that this practice may result in the misrepresentation or erasure of the realities of people in these underserved groups – populations that receive less than adequate access to resources, services, or representation, particularly those who belong to more than one underserved group.
ME Research UK notes the points raised in Hunt’s paper mirror observations from an online workshop which highlighted the importance of ME/CFS research in underserved groups, and the need to consider intersectionality – the idea that where people belong to more than one underserved group, they may face multiple disadvantages.
Research investigating ME/CFS in underserved groups – including representation of people in these communities in patient and public involvement activities, and the consideration of intersectionality, is essential to ensure these communities are represented in study findings – and any guidelines that are developed based on them.
