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For far too long, people with myalgic encephalomyelitis (ME) have been routinely dismissed, ignored, or misdiagnosed by the medical profession. A new Patient and Public Involvement (PPI) driven research study, published on HRB Open Research, led by John Cullinan, Orla Ní Chomhraí, and Tom Kindlon sheds light on how this can impact those living with ME and their carers. It also has important implications for how we treat long COVID-19 patients.

What is myalgic encephalomyelitis?

Myalgic encephalomyelitis (ME), also sometimes known as chronic fatigue syndrome (CFS), is a chronic and disabling neurological condition. It is relatively common and can affect individuals of all ages, though tends to be much more prevalent in women.

Unfortunately, there are no routine diagnostic tests for ME/CFS, while there is extensive evidence that the illness is not well understood by medical professionals. Many doctors, for example, don’t learn about it in medical school.

As a result, ME/CFS patients often face considerable difficulties getting appropriate diagnoses, treatments, and support. This can have significant adverse consequences for them, since a delay in diagnosis often results in a worsened prognosis. As well as the ill-health associated with the illness, which can be severely debilitating, ME/CFS can also have major impacts on other aspects of people’s lives. For example, research has consistently shown substantial negative impacts on education, employment, personal relationships, and social activity.

Controversy around ME

ME and CFS are both classified by the World Health Organisation as disorders of the nervous system, though multiple pathophysiological abnormalities have also been found in other systems within the body. However, while agencies such as the Centers for Disease Control and Prevention in the United States have now made clear statements such as “ME/CFS is a biological illness, not a psychologic disorder”, in the past there has been a concerted effort by some mental health professionals to have the condition portrayed as largely psychosomatic in nature.

This inappropriate psychologisation of ME/CFS has led to deep divisions between some clinicians and researchers on the one hand, and patients and patient groups on the other. In turn, this has likely contributed to minimal or non-existent patient involvement in many areas of ME/CFS research. In fact, there has been little to no progress made in terms of improving the health and quality of life of ME/CFS patients for decades, despite repeated calls for the patient voice to be at the centre of ME/CFS-related research.

Our PPI research partnership

In 2019, we formed a new ME/CFS patient-academic research partnership in response to a call by PPI Ignite @NUI Galway under the Community Engaged Scholars Programme (CES-P).

The main goals of the partnership were to:

• Examine the economic impact of ME/CFS in Ireland
• Raise awareness of the illness
• Improve the health and wellbeing of patients

Given the controversies around ME/CFS, conducting primary research can be challenging. However, by placing ME/CFS patients front and centre in our research team and projects, it has been possible to build trust with the patient community and to encourage people living with ME/CFS to engage with us.

Healthcare barriers and costs

In  our  recently published study, we consider the economic impact of ME/CFS in Ireland using focus groups with both patients and informal carers. The main aim was to better understand the range and nature of costs related to ME/CFS.

In the focus groups, ME/CFS patients identified a number of barriers to accessing healthcare, including:

• Delays getting a diagnosis
• Poor awareness and understanding of the condition by healthcare professionals
• Lack of effective treatments

Participants linked these barriers to poor prognosis of the illness, and, as a result, faced a range of additional ‘indirect costs’, such as negative impacts on employment and education outcomes. In general, this resulted in a much lower standard of living. But there were also a range of extra ‘direct costs’ of disability, which often arose due to difficulties accessing appropriate services and supports.

It wasn’t just the ME/CFS patients who were impacted as the informal carers in our focus groups also described how the condition affected them. For example, a number of participants described how the specific nature of ME/CFS led to considerable stress and burnout for carers.

One of the most notable and concerning issues that arose in our research was the extent to which ME/CFS patients experienced problems with healthcare professionals and the healthcare system more generally. For example, some participants described how their doctors either had little interest in ME/CFS, didn’t really believe in it, or were completely unaware of the condition. The mistaken belief by many healthcare professionals that ME/CFS is a psychological condition also arose in our study with participants reporting that, in some cases, this led to inappropriate treatment and care, which likely made their illness worse.

Implications for long-term effects of COVID-19

While a range of factors can cause ME/CFS, it most often develops following a viral infection. In fact, the key symptoms of ME/CFS are consistent with those now being experienced by many patients suffering from Long COVID, and there is emerging evidence outlining the similarity between the two. This had led to concerns that we may be about to see an increase in the incidence of ME/CFS as a result of the COVID-19 pandemic, and that those suffering from Long COVID may also experience the neglect that ME/CFS patients have faced for years. Before this is allowed to happen, it is time to start listening to people living with ME/CFS about their experiences.

In his review of this article, Donald Staines, from the National Centre for Neuroimmunology and Emerging Diseases (NCNED), Griffith University, Australia states: “Importantly the findings of this study echo other studies in terms of methodological approaches and key findings. Hence while of relatively small scale, its importance should not be underestimated. As the authors note, this is the first such study on health economics for ME/CFS in Ireland…Overall the article is compelling reading for consumers and providers of health care as well as research funding agencies.”

You can read the full Research Article and the peer review reports via HRB Open Research, ‘Understanding the economic impact of myalgic encephalomyelitis/chronic fatigue syndrome in Ireland: a qualitative study’>>