Imagine living with an illness that can sap your energy levels so completely that even day-to-day tasks, such as doing laundry, walking the dog, or even getting out of bed can be insurmountable challenges. To make matters worse, this illness is not well understood either by the public or by medical staff, and is often dismissed and stigmatised, making it difficult to find understanding or treatment. This is the unfortunate lived experience of many people with myalgic encephalomyelitis/chronic fatigue syndrome (or ME/CFS for short). In a recent Communication article, researcher Caroline Kingdon of the London School of Hygiene and Tropical Medicine, and colleagues, discuss this misunderstood condition through the prism of the 2021 guideline for the treatment of those with ME/CFS, which have been published by the UK’s National Institute for Health and Care Excellence (or NICE for short). Their article aims to inform primary caregivers about the NICE guideline, and, happily, reveals that the new guideline prioritises an overdue shift toward compassionate and patient-focused care for ME/CFS.