The serious, complex, and often long-term nature of ME/CFS, means that the disease often impacts a person’s ability to work. Due to the debilitating nature of their symptoms, many people with the disease are only able to work part-time while others are unable to work at all.
Prognosis – the likely outcome or course of a disease including the chance of recovery and relapse, of ME/CFS is not well understood. Although there have been a handful of studies conducted, findings are inconsistent, and more research is required.
How the income of people with ME/CFS changes over time might provide a rough indicator of disease course and severity over time – additionally, few studies have considered the long-term impact of ME/CFS on the amount a person with the disease is able to earn.
Taking this into consideration, researchers Kielland and Liu have published an article in the journal “Social Sciences & Humanities Open” which investigates the wages earned by 8,485 working-age people – 1,523 people with an ICD10 G93.3 diagnosis for “post viral fatigue syndrome” – this includes “Benign Myalgic Encephalomyelitis”, and 6,962 people without.
For the 1,523 people diagnosed with G93.3 in 2016, the researchers also summarised movement between wage categories from 2015 to 2018. The categories used were; No wages; 1-499,999 Norwegian Kroner (NOK); 500,000 or more NOK.
What were the findings?
Results showed that few of those earning no or very low income around the time of their G93.3 diagnosis resumed earning moderate wages, and only in a small number of “exceptional cases” did earning return to an amount corresponding with median wages.
- Of the 211 people earning 500,000 or more NOK in 2015, in 2018 42 (20%) earned no wages and 98 (42%) had moved to the lower income category, and 71 (34%) remained in the same wage category as in 2015.
- Of the 928 people earning between 1-499,999 NOK in 2015, in 2018 441 (48%) earned no wages, 472 (51%) remained in the same wage category and 15 (2%) increased their income to 500,000 or more NOK.
- Of the 385 people with no wages in 2015, in 2018 325 (84%) remained the same, 59 (15.3%) earned between 1-499,999 NOK, and 1 (0.3%) person moved to the highest income category.
Overall, from 2015 to 2018, 38% (581) moved to a lower wage category, 57% (868) remained in the same wage category and 5% (75) moved to a higher wage category. Notably, 38% (325) of those who remained in the same wage category continued to earn no wages.
Additionally, results showed that the impact of ME/CFS on wages could be observed from about 3 years before diagnosis:
“The G93.3 population’s wages fell sharply from around 3 years before diagnosis to one year after and stabilized at a low level.”
What does this mean?
The research team concluded that, in this study, the impact on wage income in those diagnosed with G93.3 starts to show as different to the control group years before the diagnosis is received – this is unsurprising given that people with ME/CFS particularly men and those in ethnic minority groups – experience delays in diagnosis.
Two years after their diagnosis of “post-viral fatigue syndrome”, roughly 40% of people in this study had moved to a lower wage category – This finding echoes an observation from a study (behind a paywall) by Jason and colleagues which estimated that in the United States, using data from 2020, the cost per-person for lost income due to “CFS/ME” in 2020 was $27,880.
Considerations and future research
It is essential to note that the diagnosis used in this paper was for “post viral fatigue syndrome” rather than ME/CFS – it is possible that not all participants included in this study would meet diagnostic criteria for ME/CFS should they be applied.
In the article by Kielland and Liu, the authors recognise that people with ME/CFS “may start reducing activity levels by limiting social and family commitments while holding onto their jobs as long as possible” – existing research has shown that for many people with ME/CFS, the disease has resulted in “isolation and a lack of support”.
More research is needed to understand the association between income and ME/CFS symptoms and severity in participants who meet ME/CFS diagnostic criteria requiring post-exertional malaise for a diagnosis to be made.
Additionally, as ME/CFS prognosis has been found to vary by age of disease onset – with older age at onset associated with better outcomes, it would be beneficial to assess the impact of ME/CFS on employment and income by age at which symptoms first started, age at diagnosis, and the length of time between symptom onset and diagnosis – time to diagnosis.
