We’re encouraged to see Long Covid Weekly spotlight #NotJustFatigue’s Invisible Illness Report, a first-of-its-kind survey examining the financial consequences of living with ME/CFS. While the disease is often misunderstood or minimized, the data tell a stark story. An overwhelming 94% of respondents reported professional disruption, with participants losing an average of roughly 43% of their income. At the same time, respondents faced significant out-of-pocket medical expenses, averaging $4,439 per year, alongside heavy reliance on unpaid care from family and loved ones.

These findings quantify what patients have long known: ME/CFS is not only a health crisis, but an economic one. Income instability, career loss, and persistent medical costs create compounding pressures that ripple across households.

Coverage like this matters. By bringing rigorous data into broader public conversations, Long Covid Weekly helps illuminate the lived realities behind invisible illnesses.

https://longcovidweekly.substack.com/p/long-covid-weekly-159