Loneliness and social isolation in ME/CFS

The journal Sociology of Health and Illness has recently published an article highlighting the fact that social isolation is often an unavoidable consequence of living with ME/CFS. This is unsurprising given that – as recognised by NICE in the 2021 guidelines – ME/CFS can impact negatively on many different aspects of life, not only for people with the disease, but also for their families and carers.

ME/CFS commonly affects activities of daily living, the basic yet essential, tasks that people need to do every day such as eating, keeping themselves clean, and moving around. Other aspects of life are also impacted by the disease, including family life, social life, emotional wellbeing, work and education. Many of these aspects play a key role in enabling people to build and maintain meaningful social connections. Curtailment or even cessation of these activities may result in reduced social interaction and loss of friendships. Alongside stigma and misunderstanding associated with ME/CFS, this loss of connectedness to others can result in social isolation and increased feelings of loneliness.

What are loneliness and social isolation?

In the article, the author, Dr Wotherspoon, is clear that definitions of loneliness and social isolation are complex, and have been inconsistent in previous research.

Loneliness is thought to be an emotion or feeling which could be interpreted differently by different people (subjective) – in short, it is a concept which is difficult to measure in research.
Social isolation is a lack of meaningful social connections, and although still not straightforward to define, is somewhat easier for researchers to measure.

In this study, rather than trying to define loneliness or measure the number of social connections, Dr Wotherspoon investigated how being an individual with ME/CFS impacted on loneliness – especially, loneliness that results from an individual being alone in their experience(s) because others cannot or will not try to understand (experiential loneliness).

Why are loneliness and social isolation important to study in people with ME/CFS?

Dr Wotherspoon states that unwanted social isolation can lead to loneliness, which may be distressing and impact negatively on mental wellbeing. Research has also suggested that loneliness may be associated with adverse health outcomes such as increased risk of cardiovascular disease and type two diabetes.

In the article, it is discussed that even before the COVID-19 lockdowns, loneliness was recognised as a “public health concern” amongst the general population. However, much of the research carried out to date has considered loneliness and social isolation in an ageing population, or which was a result of the social restrictions imposed during COVID-19. Little research has considered how living with a chronic disease, such as ME/CFS, may impact on experiences of loneliness.

In addition, while interventions have been developed to reduce loneliness and social isolation in the general population, Dr Wotherspoon highlights that these interventions often place the responsibility to overcome loneliness on the individual themselves, and “overlook health challenges”, meaning that these interventions are less accessible to people with ME/CFS.

Although not discussed in detail in the research paper, ME Research UK notes that interventions which aim to reduce loneliness – not specific to those with ME/CFS – are often targeted at older adults, or involve an element of physical activity. While web- and phone-based interventions have been developed, and are in theory more accessible, these still require energy, and may lead to post-exertional malaise. In addition, the stigma and misunderstanding faced by those with ME/CFS may act as a barrier to participation in interventions that are not specific to the disease.

Knowing more about how the experiences of people with ME/CFS relate to loneliness may help researchers identify areas for intervention, which are both more accessible and place less responsibility on the person with the disease to make changes.

What did the study do?

The study recruited 42 participants (36 women and 6 men) who had a diagnosis of “ME” from a doctor in the UK (the type of doctor was not specified). Participants were recruited through word-of-mouth, social media and local, face-to-face ME support groups.

The average age of participants was 38 years.
Participants took, on average, 2.5 years to receive a diagnosis of ME from onset of symptoms – notably, this ranged from 3 months to 15 years.
There was little ethnic diversity amongst the participants – 39 identified as White British, two as White Irish, and one did not disclose their ethnicity.

Participants who provided their consent to take part in the study were interviewed. Twenty-one of these interviews were face-to-face, eight were via video call and 13 via telephone. Audio recordings of the interviews were used to identify themes which best reflected the participants’ experiences of loneliness.

What did the study find?

Relating to loneliness, three main themes were identified.

1. Restrictedness

This related to how worsening and fluctuating symptoms meant that participants experienced increasing social isolation, and loneliness – participants wanted to connect but were unable to do so because of their ME.

No participants in this study were able to work full time, and the majority were unable to socialise in a face-to-face setting – this meant that participants were more confined to the home, and isolated.
Findings suggested that loss of work had a large effect in the feelings of loneliness experienced, for example through “no longer being connected to former workplace friendships”.
Much of the participants’ time was spent in private spaces such as their home, rather than public areas.
Many of the participants reported dramatic changes to their lives following the onset of “ME” – including no longer being able to manage the social lives they had before they had the disease, as they now managed their time around rest and necessary tasks. One example was given by a male participant who experienced changes related to “his social roles and expectations of himself as a father, husband, and employee” – something that ME Research UK notes corresponds to the “challenges to masculinity” identified in a previous research paper looking at lived experience of men with a diagnosis of “CFS”.
For participants in this study, requiring isolation for rest and symptom management was entangled with feelings of loneliness – although participants needed to spend time alone, they did not always want to.

2. Communicative alienation

This captured how the participants with ME often felt different or alienated from their peers.

Participants compared themselves with expectations of what their peers might be doing, or made comparisons between their current situation and the life trajectory they had prior to the onset of their ME.
Findings suggested that the participants found building and maintaining friendships challenging as they had little in common with their peers – for example, some participants found it difficult to know what to say when friends asked, “how are you?”
Living with ME often meant that participants reordered their priorities to focus on only the most important tasks and relationships, which left them with a sense of “being left behind the normal world”.

3. Discreditation and social rejection

Here, the author described how the stigma surrounding ME – alongside the scepticism and disbelief around the nature of the disease – placed a strain on relationships.

The study reported that “psychologising ME/CFS was one of the most stigmatising aspects of the illness experience”. This is something ME Research UK notes was also highlighted by Thoma and colleagues who explain in their paper that psychosomatic models of ME/CFS are inconsistent with evidence of biological abnormalities in individuals with the disease.
Participants often felt alone in their belief that they were genuinely ill.
Results suggested that social withdrawal from negativity and stigma was sometimes necessary to avoid “stigma and humiliation” – the author noted that although both situations led to loneliness, withdrawing was often less painful than continuing harmful relationships.
For one participant, friends and family were found to be “offended” by what they perceived as a “lack of effort” to engage with them as they were “unable to accept that she was genuinely ill”.
Compelled loneliness can be seen to be a social consequence of the stigma attached to ME as well as the result of the social isolation necessitated by the symptoms.

Summary

Three key themes were identified relating to loneliness in the research.

Living with and managing ME/CFS places restrictions on both time – more time is spent resting and doing necessary tasks – and how much, if at all, someone with ME/CFS was able to occupy public spaces.
Having ME/CFS created a distance between the participants and their peers. Even when participants were able to interact, they felt disconnected and often alienated.
The scepticism and disbelief surrounding ME/CFS – rooted in the ongoing misconception the disease is psychological in nature – lead to strain on, and loss of, relationships.

In the discussion section of the paper, Dr Wotherspoon highlights a key observation: although social isolation was often necessary due to the symptoms of ME, the participants very rarely wanted to be alone. The author concludes that interventions to support people with ME experiencing loneliness need to consider both the individual’s social needs and also their health challenges.

ME Research UK observes that a major limitation of this article is that the diagnosis of “ME” did not require any specific diagnostic criteria, nor did the article state the type of doctor who gave the diagnosis. While this research does contribute important findings relating to loneliness in those with “ME”, more research is needed using participants who meet standardised criteria which include post-exertional malaise as a required symptom for a diagnosis of ME/CFS, such as the Canadian Consensus Criteria.

Another potential limitation of the study could be seen as the sample size of only 42 participants. However, this type of qualitative research seeks to gain insight into experiences, perceptions and behaviours, rather than needing specific numbers of participants to power statistical tests. Despite this, as noted by the researcher, the sample lacked diversity.

ME Research UK comments that while social isolation may, at least at times, necessarily play a role in managing ME/CFS symptoms, and has been identified previously in the lived experiences of people with severe ME/CFS, feelings of loneliness – particularly experiential loneliness – may be minimised through better understanding of ME/CFS from friends and family, health care professionals, employers, and the wider community.

Takeaway messages

A recent study has highlighted that “social isolation is often an unavoidable consequence” of living with ME.
The study recruited 42 participants who had a diagnosis of “ME” from a doctor in the UK.
Participants were interviewed and audio recordings of the interviews were used to identify themes which best reflected the participants’ experiences of loneliness.
In this article, three key themes were identified relating to loneliness. These were:
- Restrictedness: Living with and managing ME places restrictions on both time- more time is spent resting and doing necessary tasks, and how much – if at all, someone with ME was able to occupy public spaces.
- Communicative alienation: Having ME created a distance between the participants and their peers. Even when participants were able to interact, they felt disconnected and often alienated.
- Discreditation and social rejection: The scepticism and disbelief surrounding ME – rooted in the ongoing misconception the disease is psychological in nature – lead to strain on, and loss of, relationships.
In the discussion section of the paper, Dr Wotherspoon highlights a key observation: although social isolation was often necessary due to the symptoms of ME, the participants very rarely wanted to be alone.
The author concludes that interventions to support people with ME experiencing loneliness need to consider both the individual’s social needs and their health challenges.
Limitations of the study include the diagnosis of “ME” used which lacked a clear definition or use of criteria with the requirement of post-exertional malaise as a symptom required for diagnosis.