For International Men’s Day 2023, ME Research UK highlighted the lack of research considering ME/CFS in men, and how living with the illness may be a very different experience for men compared to that for women.
As will be expected, for ME/CFS, much of the research published to date focuses on women. Therefore, a study, published in July 2023, considered the experience of men living with “CFS” – particularly around the time of diagnosis.
What did the study do?
The research team used an online advert, placed on an ME/CFS social media page over a 4 week period, to recruit participants who:
- Were male at birth.
- Were over the age of 18 years.
- Had received a diagnosis of “CFS from a medical professional in the last 10 years (no diagnostic criteria specified)”.
Participants were included on a “first come, first served basis”, and only 5 men took part in the study – all of whom were allocated an identification number and a pseudonym to prevent their identification.
Online interviews were used to gather detailed information from the participants about their experience prior to, during, and after obtaining a medical diagnosis of “CFS”. The questions asked in the interviews provided the participants with the opportunity to describe their experiences, with reference to the role of healthcare services. Audio recordings of the interview were used to identify themes which best reflected the participants’ experiences.
What did the study find?
The 5 men who took part in the study had an average age of 42 years, were White British (one was White British/New Zealand origin), and were all either married or had a long term partner.
Six themes were identified from the interviews with these participants – the authors stated these illustrate the journey to a diagnosis of “CFS”, the emotions felt when receiving the diagnosis, and experience of living with the illness.
The themes, and the key elements within them, were:
“Fighting the symptoms to maintain male competency”
- Hesitancy to seek medical help for symptoms.
- Battling through symptoms.
- Reluctance to accept illness.
“Perceptions of healthcare inequality”
- Preconceptions about reduced support that men with “CFS” receive in comparison to women.
- Perception that men with “CFS” are treated with less respect than women.
- Wary of visiting GPs or other health care professionals.
“Limited professional recognition of CFS symptoms”
- Frustration about the length of time taken for health professionals to recognise “ongoing physical suffering”, and treat it as “CFS” – leading to delays in diagnosis.
- Reports that health care professionals attributed ongoing health concerns to psychological issues, such as depression.
- Misdiagnosis of “CFS” as depression, chronic migraine, irritable bowel syndrome and insomnia.
- Lack of awareness of “CFS” amongst health professionals.
- The men in this study experiences feelings of “fear and hatred” towards healthcare professionals as a result of problematic clinical encounters.
- Some participants felt accused of being lazy and looking for an escape from their daily responsibilities; such as “leaving work early” or “not working at all”.
“Challenges in accepting a new life”
- While a diagnosis of “CFS” legitimised symptoms, and offered reassurance to the men in this study, there were also difficulties noted including those associated with accepting the diagnosis, and the life changes involved.
- Feelings of guilt, and concerns about the effect the diagnosis would have on marital relationships were expressed.
- Feelings of loss of old life, and a loss of a sense of masculinity.
“Challenges to masculinity”
- Participants reported that living with “CFS” symptoms negatively impacted their ability to meet perceived expectations of masculinity such as being the “breadwinner”, “being a successful father”, and not being able to carry out everyday tasks such as mowing the lawn.
- Feeling like they were unable to share feelings and emotions due to “blokey culture”.
“Importance of support networks”
- The negative impact of a lack of support at home, and at work.
- The potential benefits of being able to share experiences with another male with ME/CFS, but also some reluctance to reach out for this support.
- Existing support networks for those with ME/CFS- such as social media groups- felt inaccessible to some men, as they are often “targeted at mothers”.
What do these findings mean?
Overall, the findings from this study highlight the negative impact that the idea of “masculinity” has for men with a diagnosis of CFS:
- The pressure some men in the study felt to appear masculine led them to delay seeking medical advice – although something not exclusive to men with ME/CFS, participants in this study specifically referred feeling the need to and “battle through” symptoms. This, alongside health professionals dismissing symptoms, and misdiagnosing ME/CFS as other conditions, led to participants experiencing delays in diagnosis, and access to the appropriate care and support.
- Men in this study also felt they were unable to take part in activities stereotypically perceived to be male; from being the “breadwinner” to “mowing the lawn” and “going to the pub”, these findings are echoed by those identified for men with other chronic illnesses such as rheumatoid arthritis, where men felt they must endure the pain of RA, and carry on with “masculine activities” to avoid being perceived as “not truly masculine” by friends and family.
The study also gave an insight into some of the ways in which the support available for men with ME/CFS should be developed and improved, and clearly identifies that more research is needed to better understand ME/CFS in men.
More, high quality evidence is urgently needed to:
- Inform health professionals
- Provide education for employers and employees
- Ensure current practice is relevant to men with ME/CFS
- Reduce stigma, and empower men to seek medical advice earlier
- Develop support groups for men with ME/CFS
There were strengths but also several limitations of the study which are acknowledged by the authors:
- This study collected detailed information on the experiences of men with a diagnosis of CFS using an interview technique that allowed flexibility – semi-structured interviews. This was not only thought to be more accessible for participants who experience cognitive difficulties, but also enabled the participants to talk at their own pace, and reflect on the previous points discussed.
- This study used participants with a diagnosis of “CFS”, and did not specify the diagnostic criteria used. More research is needed in men with ME/CFS which specifies the diagnostic criteria used, and importantly ensures that post exertional malaise is an essential symptom required for a diagnosis.
- While the findings are only relevant to the 5 men included in the study, and cannot be generalised, they are suggestive of issues that may be experienced by the wider population of men with ME/CFS and require further investigation in larger sample sizes.
- There was a lack of diversity in the sample; the participants were predominantly white, heterosexual men with partners. There is a lack of research into ME/CFS in Black or Ethnic minority (BME) groups in general – the little research that does exist suggests that people from BME groups are more likely to develop ME/CFS, but are less likely to be diagnosed with the illness. Research considering ME/CFS in more diverse populations of men is urgently needed to address potential inequalities in time to diagnosis, and the impact this has on access to appropriate care and support.
- A few men expressed an interest in taking part in the study, but later decided not to participate due to the severity of their fatigue. Therefore, it is possible that this research only captures the experience of men with mild to moderate ME/CFS, and more research is needed using the recommendations from the 25% ME groupto better enable those with severe and very severe ME/CFS to take part.
While findings from this study are echoed by those from research into other chronic illnesses more common in women than men, including rheumatoid arthritis, and fibromyalgia – particularly relating to the role that the idea of masculinity may play – such as men feeling the need to “tough it out” or “battle through”, or “pressure to be the breadwinner”, it is clear that much more research is needed, to better understand the experience of ME/CFS in men, identify barriers to care and support, and to better educate health professionals.
- There is a lack of research considering ME/CFS in men, and as will be expected, for ME/CFS, much of the research published to date focuses on women. Therefore, a study, published in July 2023, which considered the experience of men living with “CFS” is of particular interest.
- 5 men with “a medical diagnosis of CFS” were interviewed about their experience prior to, during, and after obtaining their diagnosis were interviewed and found the negative impact that the idea of “masculinity” had on them based on 6 themes ranging from “Perceptions of healthcare inequality” to “Challenges to masculinity”.
- The study also gave an insight into some of the ways in which the support available for men with ME/CFS should be developed and improved, and clearly identifies that more research is needed to better understand ME/CFS in men.
- Much more research is needed to better understand the experience of ME/CFS in men, identify barriers to care and support, and to better educate health professionals.
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 paper.