‘Barely anybody understands it, but it can steal your life away’

AS health campaigners stood at the steps of Stormont recently, to call for better support services for people with Myalgic Encephalomyelitis (ME), the UH spoke with a local sufferer who was too sick to attend.

From the confines of her hospital bed, rendered voiceless by her illness, Omagh woman, Aileen McCullough, wrote to the us from her darkened room and explained what this merciless condition is capable of doing to those unfortunate enough to develop it.

As well as shedding light on the wretched toll it can take on the body and mind, Aileen also spoke about the need for a new medical approach to the illness and support for those severely affected by it.

“ME is a complex neurological disorder affecting all bodily systems,” began the 41-year-old.

“Its hallmark feature is Post Exertional Malaise (PEM), a worsening of symptoms after minimal physical or cognitive exertion.

“It is terrible, any exertion outside a patient’s already narrow limits can cause the deterioration of symptoms, relapses, disease progression and in worst cases, death. I’m 41 and have lost count of how many friends in our online community we have lost to ME.”

Around 25 per-cent of ME patients are severely affected, meaning their lives are drastically limited by their illness.

“I have more or less missed the last decade. I forget what the town I live in is really like; I almost forget what living is really like. It’s hard being unable to have a day out with your kids.”

On Monday of last week, members of Hope 4 ME and Fibro NI held a silent – but powerful – protest outside Stormont, demanding the government and medical community take action to instate specialist ME services in the North.

Aileen has volunteered with the charity since it began, but has never been well enough to meet her colleagues or the charity members in person.

“I had symptoms of ME since childhood, although this wasn’t diagnosed until my early 20s,” said Aileen. “I had a diagnosis of chronic migraines before I was seven, then I was in a car crash at eight. For a lot of my life, the doctors put my pain and other symptoms down to these things.”

Eventually, though, Aileen received a diagnosis of Fibromyalgia and POTS (an illness that causes your heart rate to increase rapidly after getting up from sitting or lying down), both of which are commonly seen alongside ME.

“After the birth of my first son and the infection that followed, my condition deteriorated and things became worse from that point.”

Since 2020, Aileen has been displaying signs of Mast Cell Activation Syndrome, a condition that causes a patient to experience symptoms akin to those produced by a severe allergic reaction.

Together these conditions have combined to severely reduce what Aileen can do.

“When my health allowed, I had been studying counselling, psychology, working within mental health and playing music.

“As things spiraled, I had to stop working, studying and playing music out, all before my mid 20s.

“I always wanted to get into McCann’s to play with my family, Barry and Niall McCullough and Tiarnan McCusker, but that dosen’t look like it will ever happen.

“I also dreamt that some day I would play with my father’s cousin, Arty McGlynn, but I was always too unwell, and he has since passed away.”

From growing up Irish dancing, playing music and generally being quite active, Aileen now finds it difficult to do even the simplest, least onerous tasks for the first few hours of the day. Severe sensitivity to noise and lights can make a simple conversation difficult or impossible.

Strongly sharing the sentiments of those that rallied outside Stormont, Aileen believes early diagnosis, advice on pacing and better care in her early years could have decelerated her decline.

“Like many with ME, I pushed through my symptoms not realising it was causing my health to deteriorate further. Unaware of PEM, I also followed medical advice to increase exercise – which thankfully is now against medical guidance. But it wasn’t then, and I ended up pushing myself into a wheelchair and hospital bed because of it.

“As I write this now, I am in a completely dark room, lying on an airflow mattress and wearing ear defenders, all in an effort to lessen the impact of trying to type and the consequences that will come after.

“Because of the lack of understanding around my condition, accessing care and support is challenging at best, impossible at worst. This year I have missed heart screening, urgent brain scans and had cancer screening delayed. There is no provision of any service for ME patients in the North.

“We need to change our attitude to ME quickly. The parents of children born with ME today should not have to be worried that their kids will end up like me.”