Despite a large number of men living with ME/CFS – estimates suggest somewhere between 52,000 and 67,000 in the UK alone – there is a lack of research representing them.
ME/CFS is often seen as a ‘woman’s disease’, and historically has been dismissed as ‘hysteria’ and as a psychological condition, which has huge implications for men with the disease. This has led to under-representation of men with ME/CFS in research, which means that both current healthcare and diagnostic criteria are based on evidence that may not accurately represent ME/CFS in men. This lack of knowledge and misunderstanding has led to much stigma around the disease – especially for men.
One man with ME/CFS reported that in over a decade of living with the illness, he had been doubted and dismissed many times, told by medical professionals there was nothing wrong with him, and even told by his peers to “man up” and “stop being a pussy”.
In addition, the limited research which does exist in men with ME/CFS has highlighted the role of societal expectations of men, and the pressures associated with views of masculinity. One study (behind a paywall) published in 2019 asked 10 men with a medical diagnosis of ME/CFS about their experiences of living with the illness, and identified the following key issues that they faced:
- Loss of masculine identity
- Through loss of job, reduced ability to be an involved father, inability to take part in social activities such as playing sport or going to the pub with friends, and added dependency on other people due to decline of physical functioning.
- Stigma around ME/CFS in men
- Men stated that they lacked support from others – both friends and family, but also from health professionals, due to the stigma associated with ME/CFS – particularly ME/CFS in men.
- Coping with the dual identity of being a man with ME/CFS
- Men recognised the need to pace themselves, and find adjustments that worked for them – such as a change in job – after an initial attempt to ‘fight’ the illness.
In addition to differences in experiences of living with ME/CFS and accessing healthcare, the limited research that exists has also suggested that there may be biological differences between men and women with ME/CFS. For example, there may be differences relating to sex hormones, in function of the autonomic nervous system, the response to exercise, and in lipids related to the immune system and inflammation. Despite these noted differences, much of the research to date is limited by sample sizes that are small, or may not accurately represent the diversity of men with ME/CFS in the population. Furthermore, results have not yet been repeated across different studies. This means that, currently, no firm conclusions can be drawn about the differences that exist between men and women with ME/CFS.
Summary
Evidence from men living with ME/CFS, and from research into other illnesses more common in women than men – including rheumatoid arthritis, breast cancer and fibromyalgia – has drawn attention to the issues that men may face. In short, the general lack of knowledge has led to stigmatisation which has many implications – including some men delaying seeking medical advice, lack of support and understanding from friends and family, and reports of health professionals ignoring symptoms entirely, or attributing them to psychological illness.
As the majority of ME/CFS research to date predominantly considers women, it is possible that the conclusions drawn are not wholly applicable to men with ME/CFS. More research is urgently needed that looks at ME/CFS in men, specifically, to better understand how to reduce stigma, improve treatment and access to care, and better educate health professionals. Additionally, research is needed that considers differences in the illness between men and women; for example, how the illness presents, how symptoms are communicated to health professionals, age of diagnosis, duration of illness, fluctuations in disease severity over time, the exact symptoms experienced, and the biological differences, and mechanisms of disease development.
More research into ME/CFS in men would be the first step in making a positive difference to the wellbeing and lives of men and boys with ME/CFS.
Read more
More detailed information on men with ME/CFS can be found in three more comprehensive articles that have been written by ME Research UK for International Men’s Day 2023:
Article 1: What do we know about ME/CFS in men?
A discussion of the reasons why men may be under-represented in ME/CFS research, and the impact this lack of representation may have.
Article 2: Lived experiences of men with ME/CFS
Summarising an article, published in July 2023, which relates to men’s experiences of living with ‘CFS’.
Article 3: Differences between men & women with ME/CFS – what does the evidence say?
A review of the existing evidence, albeit very limited, relating to the differences between men and women with ME/CFS.
A note on terminology
In this article, ME Research UK uses terms relating to biological sex that are in line with those used in the research papers.
