map

It seems that people from the black and minority ethnic population are 2–3 times more likely suffer from ME/CFS than white groups, but (bizarrely) are less likely to be diagnosed with the illness. A group from Institute of Population Health, University of Manchester has been examining why this might be – and what barriers might be in the way.

The researchers conducted semi-structured qualitative interviews with 35 ‘key stakeholders’ in North-West England, including 11 black and minority ethnic patients with ME/CFS and 5 community leaders, 2 carers, 9 GPs and 5 practice nurses. Overall, several barriers were identified, including a lack of awareness of ME/CFS among black and minority ethnic respondents. Also, religious beliefs and family and community expectations were found to be important, since patients from ethnic minorities may be more likely to manage their symptoms outside primary care using alternative therapies, prayer or spiritual healing. Language barriers may also make a diagnosis of ME/CFS harder to obtain. One aspect highlighted by the patients themselves was the importance of an on-going relationship with a GP, something which could be difficult in inner city practices with a high turnover of doctors.

The need for additional training for health professionals is stressed by the authors, who say, “Patients, carers and community leaders described how they believed that some GPs may hold stereotypical views of people from certain cultures such as being ‘lazy’, ‘complainers’ or ‘work shy’ ”, views which might prevent a proper diagnosis being given. There is also a need for culturally sensitive, educational resources for patients to explain symptoms and encourage them to come forward for help.

Reference: Diagnosis and management of chronic fatigue syndrome/myalgic encephalitis in black and minority ethnic people: a qualitative study. Bayliss K et al. Prim Health Care Res Dev 2013 May 23: Epub ahead of print