Ground-breaking Irish study highlights economic impact of chronic fatigue syndrome

When a study found 35 per cent of people who tested positive for Covid-19 were still unwell weeks later, the Director of the National Institute of Allergy and Infectious Diseases in the United States, Dr Anthony Fauci, noted: “It’s extraordinary how many people have a post-viral syndrome that’s very strikingly similar to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).”

Now, the first study of its kind is reporting on the impact ME/CFS is having on Irish society and the economy during the pandemic.

ME/CFS is a disabling and often long-term illness and the symptoms include sleep disturbances, cognitive difficulties, pain, and orthostatic intolerance.

It is estimated around 15,000 people in Ireland are living with the condition, which often occurs after an infection such as the SARS-CoV-2 virus which causes Covid-19.

Campaigners said they expected interest in ME/CFS to increase over the coming months, with many expected to present with symptoms after testing positive for Covid-19.

Researchers from the Irish ME/CFS Association in partnership with NUI Galway and University of Limerick studied the economic impact the condition was having in this country.

Data was gathered from 15 ME/CFS patients and six carers.

Participants described numerous barriers to healthcare that led to extra costs, including delays getting a diagnosis, poor awareness/understanding of the condition by healthcare professionals, and a lack of effective treatments.

Direct extra costs of disability were also described, which were often as a result of difficulties accessing appropriate services and supports.

Carers, meanwhile, told of a range of impacts including time costs, burnout, and the effect work and study.

Commenting on the findings of the Health Research Board-funded study, Orla Ní Chomhraí, of the Irish ME/CFS Association, said she hoped the research would lead to similar studies.

“The patient voice is often sidelined in research in this area, so this study was an attempt to redress to balance a little bit, and for patients to have their experiences heard and reported on in an academic journal,” she added.

“It was good that this study included the impact on carers,” Vera Kindlon, Chair of the Irish ME/CFS Association, said.

“Many carers make economic, time, and other personal sacrifices to care for their children, often adult children, who have difficulty accessing other help needed to manage the basics of daily living. Hopefully this study will lead to a greater interest in the condition, and appreciation of the importance of better management and access to supports at an institutional level.”

The study is available here.