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A recent case has highlighted the lack of care for people suffering from myalgic encephalomyelitis (ME), or chronic fatigue syndrome. Maeve Boothby-O’Neill died at the age of 27, severely malnourished and unable to sit up. Her death prompted warnings from a coroner that other people could die unless things change, and the coroner concluded that care for those with the most severe ME is “non-existent”. The truth is that the condition is hard to diagnose and affects people differently, leading to difficulties in the development of treatment plans.
Nicole, 52, has had severe ME for six years and spends most of her time in bed with the light off and black-out curtains on the windows. Her daughter has had to give up work to care for her mother. One major concern for Nicole is food. She’s lost 120 pounds in two years and says that her body shuts down if she tries to eat. During the inquest into Maeve’s death, the coroner said that there were no specialist hospital or hospices, beds, wards, or other healthcare provision in England for severe ME patients. The ME Association is calling for an audit to see how much of the NHS is providing the recommended care, as set outside the National Institute for Care and Healthcare Excellence (NICE).
Khalil Khabiri, 42, had to give up his work in property renovation due to ME, which he says has “really deteriorated over the past two years”. His first GP was very supportive and got him a diagnosis, but another GP told him it was “all in his head”. Many people with ME are stuck in the past, with some healthcare staff still believing that the condition is psychosomatic, leading to disdainful treatment in hospitals.
There is no cure for ME and no single test that can diagnose it. Baroness Finlay says there is “a crying need” for more research, but there is a lack of funding for research into the causes of ME and the new treatments. NHS England claims that improvements are needed within the health service and across society to increase understanding and awareness of ME and to make sure that patients and their families are listened to. The Department of Health and Social Care says it is committed to enhancing the care and support for all those affected and intends to publish a plan this winter to boost research funding and improve attitudes towards, and the lives of, people with ME
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