Specialist doctor Per Julin at Karolinska University Hospital describes how many ME patients face mistrust in primary care. The family of 21-year-old Maja, bedridden for three years after covid, has fought for proper diagnosis and support. The lack of knowledge about the disease persists despite increased evidence post-pandemic.
ME, or myalgic encephalomyelitis, is a neurological disease causing deep fatigue after infections like covid. According to Per Julin, specialist in rehabilitation medicine at the postcovid clinic at Karolinska, knowledge is lacking in primary care. "Some get great help while others are met with 'no, this doesn't exist and what is ME?'", he says.
Sweden has only two specialist clinics for postcovid and similar conditions. Patients are referred there, but otherwise ME is handled by the regions. Julin stresses the importance of understanding post-exertional malaise (PEM), where exercise can worsen symptoms. The disease is now recognized by WHO and U.S. authorities as a physical condition, with research pointing to genetic and autoimmune factors.
Maja, 21, from Krylbo in Dalarna, fell ill with covid in January 2022. The active teenager, who did gymnastics and worked part-time, got glandular fever shortly after and became bedridden. Primary care suspected mental health issues and prescribed antidepressants, but the family turned to a private clinic where POTS was diagnosed. At a meeting, mother Malin Rabb was accused of fabricating symptoms, but social services distanced themselves. After personal contacts, Maja got a referral to Karolinska, which confirmed postcovid and POTS, but no official ME diagnosis.
The family feels betrayed by Region Dalarna, which refused referral in 2022 due to lack of evidence. Now Maja receives remote care from a Danish private clinic, funded by donations. She has been bedridden for three years, sensitive to light and sound, and recently stood for eight seconds. "It's like a person has disappeared", says the mother. Many ME patients improve over time, especially youth, but no curative treatment exists. The family hopes for progress so Maja can participate in life again.