Though myalgic encephalomyelitis or chronic fatigue syndrome (CFS) is more widespread than many people realize, the condition has few resources and no remedy. The disabling condition is complex, with no succinct thread to explain the underlying cause. Patient’s conditions vary in severity, progression, and outcome; and research and diagnostic tools are equally fragmented.
In the study, “Understanding the economic impact of myalgic encephalomyelitis/chronic fatigue syndrome in Ireland: a qualitative study,” researchers wanted to find out the financial costs the condition has on the Irish community living with the illness, both caregivers and patients.
They found that the lack of treatment and expertise for the condition leaves the community to deal with a wide range of unexpected expenses, including money to cover the more obvious healthcare needs, but also a range of indirect costs due to missed opportunities in the work world and overall need for extra support.
Myalgic Encephalomyelitis / Chronic Fatigue Syndrome
Myalgic encephalomyelitis or chronic fatigue syndrome is a chronic condition that plagues patients with unceasing tiredness, not effected by rest. This can cause symptoms including intense fatigue, the inability to preform daily tasks, low stamina, brain fog, dizziness, and blurred vision, depression, joint and muscle pain, headaches, swollen lymph nodes, and more. This can be exacerbated by mental and physical activity, becoming a barrier to everyday life. Many patients have to quit their jobs and lead more limited lives as a result. While people of any age or circumstances can have the condition, it is most common among women aged 30 to 50.
The Word From The Community
In their study, the researchers went directly to the patients to talk to them about the many obvious and hidden costs they took on with their condition. They spoke to focus groups comprised of both 15 patients and 6 caregivers. In the sessions, participants and researchers conversed about the many ways their disease impacts their finances. The disease community members discussed the various ways that the costs arise and why.
In these audio-recordings, which were later transcribed for analysis, the researchers outlined a core set of categories— they found they could largely came from (1) Healthcare barriers and costs; (2) Socioeconomic costs; (3) Costs of disability; and, (4) Carer-related costs.
There were the more obvious healthcare costs, but there were also the many other factors that come from the poor prognosis and lack of treatment. They describe how the overarching lack of knowledge by healthcare professionals on the disorder, the difficulty and delays in getting a diagnosis, and the ultimate lack of effective treatment options led to a range of both direct and indirect costs.
This included direct costs of a disability—such as getting access to services, and the lack thereof. It also included the costs in time and energy that patients and caregivers alike had to take from school and work, causing them to miss out on job opportunities and to be more prone to burnout from overwork.
Each of these issues are intersectional, as a patient’s limited mobility and capacity has ripple effects through their many life decisions. The researchers conclude their chat with the community showing that ME/CFS patients grapple with wide social issues that impact their overall socioeconomic wellbeing. Hopefully with this data on range of financial impacts, they can begin to think about ways to mitigate issues and provide the community with as many opportunities as can be.
