Chronic fatigue syndrome affects an estimated 241,000 people in England.
The NHS has been told to stop dismissing and stigmatising patients with myalgic encephalomyelitis (ME) under a government plan to overhaul care for the debilitating illness.
Doctors and medical students will be offered greater training as part of a national strategy vowing to “improve attitudes” to ME and “trust and listen to those with personal experience”.
The government will also promote medical research to find treatments for ME, also known as chronic fatigue syndrome (CFS), which affects an estimated 241,000 people in England. Symptoms include prolonged fatigue, dizziness, pain, sleep disorders and gastrointestinal problems. It leaves one in four sufferers unable to leave home, with some needing to be tube-fed.
The interim plan, led by the Department of Health, is the first government strategy aimed at improving the lives of people with ME and is open to consultation for eight weeks. It acknowledges that ME patients struggle to access care, treatment or to get a diagnosis.
Many hospitals are also ignoring treatment guidelines, issued in 2021, which say patients should be given a personalised plan. The document adds: “Many people with ME/CFS report experiences of dismissive attitudes towards them from some professionals and feel stigmatised.”
It says patients should no longer feel “blamed for being ill, staying ill or experiencing deteriorating symptoms” and must “experience the same standard of care as people with other long-term health conditions”. While there are no known cures or treatments, people with ME can be supported to manage their symptoms and maximise their quality of life.
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