Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) is a complex condition that has a severe impact on patients’ health and quality of life. The condition remains little known and poorly understood, which complicates diagnosis and treatment and contributes to stigma and scepticism, both in the patient's environment and, at times, among healthcare professionals. As a result, many patients find that their interactions with the healthcare system are challenging.
What do patients really need? How can we better support them throughout their care process? KCE has investigated all of this, in close collaboration with various patient organisations.
📌 The way forward:
- Greater knowledge of the condition and effective treatments, supported by targeted research programmes.
- Multidisciplinary, personalised and well-coordinated care pathways, with better access to specialist reference centres.
- Greater expertise on ME/CFS amongst all healthcare professionals involved.
- Broader societal and institutional recognition of ME/CFS.
The full publication is available here.
