Readers have responded to George Monbiot’s recent article highlighting the inadequate treatment and research into ME/CFS, describing the condition as a national scandal. One sufferer, Ewen Tanner from Derbyshire, shared his experience of severe fatigue following a mild Covid infection, noting that NHS help has been limited to advice on pacing. He described a distressing work capability assessment for universal credit where he struggled to speak after a 40-minute phone call, only to be initially deemed fit for work before a tribunal overturned the decision.
Another reader, the mother of a 33-year-old woman with ME/CFS since age 15, recalled being told to force her daughter into school, which made her condition ten times worse. Even five years ago, her daughter was pushed towards exercise and psychological solutions, which she described as a box-ticking exercise. The mother expressed hope that research into long Covid will also benefit ME/CFS patients.
Cynthia Floud from Buckinghamshire, who recovered from ME/CFS, praised Monbiot’s article but noted the omission of effective treatment. She recovered by taking the antidepressant sertraline as part of a small 1990 trial at the Royal Free Hospital, which helped restore deep sleep. She lamented that no further trials of sertraline for ME/CFS appear to have taken place due to medical establishment attitudes.
The letters also highlighted systemic failures. While the National Institute for Health and Care Excellence (Nice) now recognises ME/CFS as a genuine condition, implementation of its recommendations has been disappointing. Diagnosis should occur within three months of symptom onset, but many wait a year or more. Specialist care remains patchy in England and nonexistent in Scotland, Wales and Northern Ireland, with children still threatened with inappropriate childcare proceedings.
Despite affecting at least 250,000 people and costing the UK around £3.5bn annually, government investment in research and management has been pitiful. The neglect, based on outdated attitudes, continues to blight the lives of thousands.
