The treatments being offered as a result of that thinking, have fallen short.” It’s a case study in how historically an illness has been psychologised when it’s actually physical. And largely from this 1970s misogyny this entered the medical folklore. “One of the main reasons they drew this conclusion was because most of the patients affected were women, nurses working in the hospital, who fell ill simultaneously. 15 years later, two psychiatrists published an article in the British Medical Journal that declared the outbreak to have been mass hysteria. The doctors at the time concluded that there was some neurological basis to this illness and it was probably some kind of viral infection. Brian Hughes, professor of psychology in NUIG, explains how this happened: “The term was first popularised after an outbreak in the Royal Free Hospital of London in the 1950s when many people became ill. Many believe that progress in treating the disease has been hindered by an inaccurate belief that it’s a psychological disorder. The common cardinal characteristic is post exertional malaise.” They have head shakes and limb shakes and very disturbed sleep. “Those with very severe ME lie motionless, are tube fed, suffer multiple level pain, suffer periodic paralysis, blood pressure and heart issues, muscle weakness, numbness, cognitive dysfunction, visual difficulties, muscle spasms, multiple sensitivities, gut issues, sleep issues. She thinks that newspapers often feature people with a milder form of the disease and that this leads to a misunderstanding of how serious it can be. One of the main reasons they drew this conclusion was because most of the patients affected were women, nurses working in the hospital, who fell ill simultaneously Symptoms may be cardiovascular, immunological, endocrinological, respiratory, hormonal, gastrointestinal.” “ME is a multi-symptom system disease,” she says. Moira Dillon from ME Advocates Ireland thinks that even the term “chronic fatigue syndrome” does sufferers a disservice. Patients themselves have never been in doubt about the biological nature of the disease. And there are very few doctors who specialise in the illness in this country. There is, as yet, no cure and no reliable treatments. Some people’s illness remits and relapses while others are continuously bedbound and racked with pain. Most get the condition in the wake of an infection. There is no official record of how many people in Ireland suffer from ME, but international prevalence rates suggest it affects between 10,000 and 19,000 people here. More recently, patient activism, combined with new data on the underlying biology of the illness, has resulted in changes in treatment guidelines and a renewed focus on ME as a biologically grounded post-viral disease. Sufferers of myalgic encephalomyelitis, or ME, have long felt disregarded by some medical professionals who believed their pain and exhaustion to be a psychological disorder.
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