In 2021, Maeve Boothby O\u2019Neill, 27, died from malnutrition caused by severe ME. The coroner issued a prevention of future deaths report highlighting \u201cnon-existent\u201d specialist care and said there would be more preventable deaths unless the government took action. <\/p>\n
\u2022 My daughter died from ME. This new plan fails her and others like her<\/a><\/p>\n ME, also known as chronic fatigue syndrome, is a complex neurological disorder, usually triggered by a viral infection, which affects an estimated 400,000 people in England and Wales. Symptoms include exhaustion and pain and patients may be bedridden and unable to eat or drink. Severe cases can be fatal. Overturning a misconception in medicine that ME is a psychological or behavioural disorder has taken decades. <\/p>\n Maeve Boothby O\u2019Neill with her father, Sean O\u2019Neill<\/p>\n There is no treatment or cure but the National Institute for Health and Care Excellence (Nice), the NHS watchdog , has issued treatment guidelines highlighting that many patients \u201chave experienced prejudice and disbelief and could feel stigmatised\u201d.<\/p>\n Sonya Chowdhury, the chief executive of Action for ME, said a psychiatrist had suggested Victora-May\u2019s symptoms were the result of past trauma. <\/p>\n She said that while Nice guidelines stated that ME patients could experience \u201chypersensitivity to light, sound, touch, movement, temperature extremes and smells\u201d, Victora-May had had \u201clots of people going in and out of the room, turning the light on\u201d. <\/p>\n Chowdhury said Victora-May\u2019s case had thrown into \u201crazor-sharp focus\u201d continued failures in treatment for severe ME. \u201cI\u2019m very worried that without the proper care she\u2019s going to die, it\u2019s appalling,\u201d she said. <\/p>\n \u201cThe coroner\u2019s inquest following Maeve\u2019s sad death<\/a> was very clear about improvements that could be made and the need for action. It\u2019s appalling that several years after Maeve\u2019s death we are still seeing similar treatment that is leaving people at best in severe pain and distress and at worst facing death.\u201d<\/p>\n Victora-May\u2019s case has been raised in the House of Commons<\/p>\n Tessa Munt, a Liberal Democrat MP, raised Victora-May\u2019s case in the Commons last week and asked for an \u201curgent update\u201d on a specialised NHS service.<\/p>\n![\"Maeve](\"https:\/\/www.newsbeep.com\/nz\/wp-content\/uploads\/2026\/02\/\/1778ca4f-df64-4828-b6e7-98281bab72c4.jpg\")
<\/p>\n![\"Savannah](\"https:\/\/www.newsbeep.com\/nz\/wp-content\/uploads\/2026\/02\/\/df137f2b-beb9-4c67-8a24-11ee1b15deed.jpg\")
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