Mystery illness that ruins lives
Lifestyle - After being treated for an infection 20 years ago, Orla Ní Chomraí expected to make to a normal recovery But she didn’t. Instead, she felt constantly tired and dizzy. Eventually she was diagnosed with Chronic Fatigue Syndrome, a condition which is difficult to identify and which divides medics. But with some 15,000 people in Ireland affected, the costs are high. Orla has played a key role in new research that shows the personal. social and economic impact of CFS, as she explains to BERNIE NÍ FHLATHARTA.
Orla Ní Chomraí’s life changed when she got an infection 20 years ago that left her with a disabling and complex chronic disease known as ME. But that hasn’t stopped her being one of the lead researchers of a national study into the economic impact of this long-term illness. Its findings are being published this month to raise awareness of Myalgic Encephalomyelitis (ME), which is also known as Chronic Fatigue Syndrome.
Orla was just 23 years when she got sick after completing her MA in Dublin (following an arts and history degree at NUI Galway). Once her infection had been treated, she was looking forward to a recovery, but noticed that she was constantly dizzy and fatigued.
“It went on and on and I didn’t improve,” says Orla who recalls going from doctor to doctor to find answers and a cure. She changed doctors and was eventually diagnosed with ME. Although she vaguely knew what it was and, in fact, knew someone who had it, she still expected to recover.
“My best period was a year into it after being diagnosed. I had a bad relapse in 2005 but overall, I live with flu-like symptoms and am fatigued all the time. It affects my concentration, my memory and my sleep. It’s very disabling and so very restrictive. My social life and career came to a stop,” she says.
And though ME is quite a common illness it is much misunderstood and often dismissed by medics, many of whom say it’s psychosomatic.
In fact, many of the people who took part in three focus groups for the research project – run jointly NUIG and patients from the Irish ME/CFS Association – shared similar experiences of not being taken seriously or believed by their GPs, of doctors and nurses admitting to not knowing much about ME and, worse, being told they were lazy or looking for attention.
Participants in the study, which began before the pandemic when people could meet physically, said they were years – three on average – waiting to be diagnosed. Even after being diagnosed, they found it difficult to secure social welfare payments.
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is poorly understood, and routine diagnostic tests and biomarkers are unavailable.
Until this latest study, there had been no data on the economic impact of ME/CFS in Ireland but the material now collated suggests that there is a wide range of costs. These include the wider societal costs in the form of the health service; lost productivity and the impact on informal carers; and the sufferers’ own personal loss of work or a career.
This research, carried out by Orla and her fellow lead researcher, Dr John Cullinan, Senior Lecturer of Economics in NUIG, will inform an ongoing programme that aims to quantify the economic burden of ME/CFS in Ireland and raise awareness of the illness among healthcare providers and policymakers.
For more, read this week’s Connacht Tribune.
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