Evidence
Alert

People with chronic fatigue syndrome want to be taken seriously and to receive personalised, empathetic care

Chronic fatigue syndrome (CFS) is a complex, long-term condition that dramatically limits people's activities. It is also known as myalgic encephalomyelitis (ME). People with CFS/ME are exhausted for no reason; rest does not help and it can take days or weeks to recover from any activity. Some describe 'brain fog' and problems with memory, concentration and speech.

Doctors can find it challenging to care for people with this condition. There is no specific test for diagnosing CFS/ME and no 'gold standard' effective therapy. Many potential treatments are hotly debated by doctors and patients.

A new study explored patients' views on the care they would like to receive. Researchers pooled data from 47 studies on patients' experiences of CFS/ME and their relationships with healthcare professionals.  They found that people with CFS/ME wanted a personalised approach, and for doctors to provide a sense of safety to allow them to work through complex issues.  But they often felt invisible and dismissed by doctors.

The findings suggest doctors should take time to listen to the views of their patients (even if they disagree with them) and work together to find treatments that minimise the impact of the condition on the person’s daily life. The researchers say that training could help doctors build successful relationships with people with CFS/ME.

What’s the issue?

CFS/ME is characterised by debilitating fatigue; people may be unable to leave the house, or to get out of bed. It may take them days or weeks to recover from any activity. They are not refreshed by sleep and may have cognitive difficulties with memory or concentration; they may be confused, have slurred speech or problems finding words. This complex condition lasts at least four months and often much longer.

People with CFS/ME may need support with many aspects of their health and life. However, the condition is poorly understood and there is a history of disagreement between doctors, researchers and patients about its causes and how to treat it. There is no diagnostic test for the condition.

Some of the main treatments include cognitive behavioural therapy and graded exercise therapy – in which physical activity is gradually increased. But these approaches are controversial and experts continue to debate whether they are effective. Some patients report negative effects from graded exercise therapy. Many doctors admit that their medical education fails to equip them with the skills necessary for managing the complexities of patients with CFS/ME.

So, researchers set out to examine the ways in which people with CFS/ME relate to those around them, and how these relationships affect the support they receive. The research has implications for the type of care they need from healthcare professionals.

What’s new?

The research pooled data from 47 studies that have previously explored the views of people with CFS/ME. A patient advisory group guided the study throughout, from initial planning, and refining the research question, to interpreting the findings.

Five key themes emerged from the analysis:

  1. Feeling invisible, blamed and not believed. People with CFS/ME said they were often denied support because the illness is not physically identifiable or verifiable through diagnostic tests. This can be made worse by being seen on their ‘good’ days: “I think one thing between me and my GP is complete lack of awareness of how I am when I’m really ill.”
  2. Difficult relationships with health professionals. People felt they were not taken seriously; their symptoms were considered psychological rather than physical or were trivialised: “At the end of the examination, he said ‘I can’t find anything wrong with you, you must have ME, but I don’t believe in it.” This led patients to try complementary or alternative medicine and to turn to significant others, rather than professionals for support.
  3. A desire for person-centred care. People wanted services that cared for all aspects of their condition and to have control over their own care. They wanted ongoing, flexible support from healthcare professionals, and to be able to trust them. Listening to patients might be more of a priority than addressing physical symptoms: her [health professional’s] empathic nature was her greatest skill, anything else for me came secondarily”.
  4. The need for support for all aspects of daily living in severe CFS/ME. People had to call on support from health and social care professionals, family, partners, and friends. They needed help with shopping, cooking and mental support but found it exhausting to have to ask: “informing [people] of how, when and why is almost as exhausting as completing the tasks themselves.” But daily living was difficult or impossible without this help.
  5. Shrinking social circles. Fatigue and other symptoms prevented people from engaging with friends and family and they felt they were losing their identity: “I felt for a while that I had no identity apart from just being a sick, non-person”. Making new friends with similar experiences of CFS/ME helped people to cope with their illness.

Why is this important?

The new research finds many CFS/ME patients feel unsupported by health professionals, which can make the illness all the more distressing. Patients want to be listened to, have their symptoms believed and be given realistic support that takes their life circumstances into account. They also want their beliefs about CFS/ME to be acknowledged, even if they are different to current medical theories. However, the study also found that views about the condition are highly polarised. This means it is challenging for professionals to provide the kind of care people want for CFS/ME.

The researchers suggest healthcare professionals should give personalised, empathetic care to their CFS/ME patients, and suggest treatments that minimise the impact on daily life. They say health professionals should provide a sense of safety. This way, patients may feel more able to work through complex issues, such as the mental health implications of CFS/ME, without feeling defensive or dismissed.

What’s next?

The study’s findings align with new draft NICE guidelines for CFS/ME which emphasise that CFS/ME is a complex condition for which there is no ‘one size fits all’ approach to managing. The draft guidance (available online and due to be officially published in April 2021) suggests treatment based on fixed step-by-step increases in exercise should no longer be offered because of harms reported by people with the condition. It stresses the need for a tailored approach to care in which patients and doctors work together to explore the best treatments.

This research suggests that, since healthcare professionals find treating CFS/ME challenging, doctors may need more training on how to build successful relationships with their CFS/ME patients.

The researchers of this study hope to work with other experts who are developing alternative management strategies and support options. They want to combine the best of all approaches for CFS/ME patients.

You may be interested to read

The full paper: Pilkington K, and others. A relational analysis of an invisible illness: A meta-ethnography of people with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and their support needs. Social Science & Medicine. 2020;265:e113369

A study looking at GPs’ experiences of treating CFS/ME: Bayliss K, and others. Overcoming the barriers to the diagnosis and management of chronic fatigue syndrome/ME in primary care: a meta synthesis of qualitative studies. BMC Fam Pract. 2014;15:44

New draft NICE guidelines for the management of CFS/ME: Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management [GID-NG10091] (expected publication date 21 April 2021)

The ME Association - a UK charity that supports people with ME/CFS through all stages of their illness

 

Funding: This research was funded by the NIHR School for Primary Care Research.

Conflicts of Interest: The study authors declare no conflicts of interest.

Disclaimer: NIHR Alerts are not a substitute for professional medical advice. They provide information about research which is funded or supported by the NIHR. Please note that views expressed in NIHR Alerts are those of the author(s) and reviewer(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.

Commentaries

Study author

We uncovered unique insights that only patients themselves can provide. They described the approaches for CFS/ME that help them. This understanding is a vital step if we are to make progress in the commissioning and provision of care for people with the condition.

Damien Ridge, Professor of Health Studies, University of Westminster

Lived experience

Reading this analysis was moving for me, as someone with a diagnosis of CFS. My experience of support from GPs has been well-meaning, but they are clearly baffled by the constantly-changing advice on treatment and the lack of any consistently helpful approach. They didn’t know how best to engage with me. I would really like professionals involved in supporting people with CFS/ME to read this to better understand what affected people go though. It would be great if the research prompted commissioners to fund focused training developed in collaboration with a patient advisory group, as the researchers suggest.

The contents of this research will be no surprise to people with CFS/ME but will be validating and reassuring. And also helpful to their friends, family, and colleagues so they can better understand the issues and think about ways of accepting and supporting people. My partner is kind and caring, but it has been so difficult for him to understand the impact CFS has on me.

I would like to think this paper could promote a less blaming culture and shift professional and public attitudes towards greater understanding and acceptance of the needs of people with CFS/ME. This would be helpful on so many levels, including to society as a whole. The ability of people to engage in employment and society at large is much affected by CFS/ME, but it could be really improved through better understanding and a different approach to sufferers.

Julie Wright, Public Contributor, Brighton