A review study – summarising the evidence from 30 research articles – has highlighted the complex ‘human responses’ – such as uncertainty, fear, grief, loneliness, and frustration – that many people experience as they navigate life with ME/CFS.
Results also suggested that there are four main phases people with ME/CFS go through as they move from initial symptom onset, to obtaining a diagnosis, and learning to live with the disease.
The four phases identified were:
1. Crisis – ‘a phase which can last for years, until individuals receive a diagnosis, their symptoms stabilise, or they become more able to recognise them’.
- In this phase, symptoms of ME/CFS begin – this may be gradual, sudden, or progressive – often leading to confusion and uncertainty due to the diverse and fluctuating nature of the symptoms experienced.
- The research team noted that often, individuals seek advice from health professionals for diagnosis and treatment. However, this process can be long and complex “prolonging a period of uncertainty in which fear and anxiety are prominent”.
- If health professionals are not familiar with ME/CFS, they may misdiagnose the disease, prescribe ‘inappropriate treatments, such as antidepressants or increased physical activity’, or trivialise the symptoms.
- Some groups, such as men with ME/CFS who experience gender stereotypes associating masculinity with strength and energy, can delay or avoid seeking medical advice, further delaying diagnosis.
- Research has also shown that there are racial disparities in the diagnostic process, and although people from ethnic minority groups may be more likely to have ME/CFS, they are less likely to have a diagnosis of the disease.
- Regrettably, people with ME/CFS experience trivialisation of symptoms, scepticism and hostility in some clinical encounters. This can lead individuals to question their own worth, and creates ‘an atmosphere of tension’ between the person with ME/CFS and the health professional which, for the person with ME/CFS, is ‘marked by frustration, anger, and disappointment’.
- Importantly, any delay in diagnosis can lead to worsening in symptoms as individuals may make “intense efforts to maintain their previous level of activity, attempting to normalise their situation – only to realise that this exacerbates their condition and leads to further deterioration”.
2. Stabilisation – In this phase, individuals with ME/CFS learn about energy management, and experience the uncertainty of living in a body which is no longer in their control.
- Before entering stage 2, an individual must have received a diagnosis of ME/CFS. While this diagnosis validates the illness experience, those with the disease are continually exposed to scepticism and disbelief from health professionals, family members, and friends – this can lead to feelings of loneliness and social isolation.
- While individuals gradually learn to adapt their activity levels to balance their energy in this phase, the unpredictability of the illness limits success of energy balance.
- Often, people with ME/CFS must prioritise roles, for example, if their situation is not financially stable, they may be forced to continue working, which not only has a detrimental effect on their health, but they must also limit other areas of their life.
- Those with ME/CFS may also need support with home maintenance, role performance – such as parenting or caring responsibilities – or even for self-care.
- As ME/CFS is an invisible illness, seeking help with adjustments to improve accessibility can be challenging, in the paper it is noted that “Explaining to someone how, when, and why assistance is needed – despite appearing healthy – a can be almost as exhausting as completing the task independently, becoming a daily source of anxiety”.
- The lack of control experienced by people with ME/CFS is also discussed in this phase; the results from the review showed that before the illness, individuals were aware of their bodies limitations and felt in control. However, ME/CFS changes the relationship between the self and the body leading to a sense of unfamiliar disconnection which can erode self-esteem.
3. Resolution- The true transition into this phase occurs when individuals accept that their life will never return to how it was before.
- Transition into this phase can be slow given the clinical uncertainty around ME/CFS, and the fluctuating nature of the disease.
- As a result of living with ME/CFS, those with the disease experience many losses, including family roles and relationships, employment, social relationships, and even ones very sense of self. The authors note that “These losses are profound and devastating, with grief emerging as a response to them”.
- The authors state that to move through phase 3 and into phase 4, the person with ME/CFS must work through the grieving process, “saying goodbye to the past self, and letting go of the unsustainable aspects of both the past and future self” – for some people with ME/CFS, this is not possible, and they remain in a cycle of moving between phases 2 and 3, unable to process their losses.
- In this third phase, self-management of health focuses on improving daily life within the constraints of the illness – working within the ‘energy envelope’.
- An important point made by the research team is that “full control over the illness is not possible, leading to fluctuations, relapses, and temporary setbacks”.
- Similarly to phase 2, in this phase, the authors state that many people with ME/CFS have to limit their daily activities and restrict their social lives, which can lead to loneliness and isolation.
4. Reconstruction – In this phase, individuals with ME/CFS learn to recognise themselves within the context of the disease and become capable of managing it more effectively.
- In this process, individuals may hold onto aspects of their ‘healthy self’. This allows them to assert their identity, whilst also adjusting to the constraints imposed by the illness.
- Importantly, the researchers emphasise that reaching stage 4 does not mean staying in it permanently. This ‘identity reconstruction’ requires continuous and significant psychological effort and is not a definitive endpoint.
Limitations of the review?
In their paper, the research team explain that:
- In over half of the studies included in the review, the ME/CFS diagnostic criteria fulfilled by participants was not specified.
- Only studies on participants who had a diagnosis of ME/CFS were included in the review – this may have excluded valuable accounts of those who have the disease but do not yet have a diagnosis.
- There were very few studies identified which included people with severe or very severe ME/CFS, meaning that these findings may not reflect experiences of the 25% of people with ME/CFS who are most severely affected by the disease.
What do the findings mean?
The findings from this review may help health professionals to understand the complex journey that people with ME/CFS navigate after they first become unwell with symptoms of the disease. The researchers conclude that the four phases they describe make “visible the challenges faced by individuals with ME/CFS, facilitating the development of targeted interventions aimed at supporting their adaptation to the illness”.
