Struggles of Post-COVID and ME/CFS Patients Reveal Gaps in Swedish Healthcare
Patients with post-COVID and ME/CFS in Sweden face mistrust and inadequate care, highlighting systemic healthcare challenges.
- • Maja Westerlund has been bedridden for three years due to post-COVID complications including POTS.
- • Her family has struggled with misdiagnoses and lack of recognition for ME/CFS by regional healthcare.
- • ME/CFS patients often face mistrust and dismissal within the Swedish healthcare system.
- • Specialist Per Julin highlights a significant knowledge gap and inconsistent patient support regarding ME/CFS.
Key details
Maja Westerlund, a 21-year-old from Krylbo, has been bedridden for three years following severe post-COVID complications, including POTS and suspected ME/CFS. Once an active teenager, Maja suffers from debilitating symptoms such as extreme fatigue, headaches, and sensory sensitivities, unable to leave her bed or maintain basic self-care. Her family has faced significant challenges in obtaining proper medical care, including misdiagnoses and accusations of Munchausen syndrome by proxy against her mother. They eventually secured a POTS diagnosis privately and are seeking recognition for ME/CFS, which the regional healthcare system has yet to formally acknowledge. Recently, treatment from a Danish clinic has led to minor improvements, with Maja starting to stand briefly and regaining some motivation to engage in activities (103563).
ME/CFS remains controversial in Sweden, with many patients reporting feelings of mistrust and inadequate care. Specialist physician Per Julin notes a significant lack of understanding within the healthcare system, where some patients receive good support but others are dismissed or told ME is not a recognized condition (103562). This reflects ongoing systemic issues in acknowledging and managing chronic fatigue syndromes.
These personal stories illuminate the broader healthcare challenges faced by vulnerable patients, underscoring a pressing need for increased awareness, better diagnostics, and compassionate care pathways for ME/CFS and post-COVID conditions in Sweden.