Galway man Gavin Connolly (27) has been suffering with myalgic encephalomyelitis since 2013. He and his carer, mum Edna, talk about the devastating impact of the disabling and complex illness
At 20 years of age, Gavin Connolly had his whole life ahead of him. He was studying engineering at NUIG and the world, after graduation, was his to explore. But, due to contracting a debilitating condition, seven years later, he is living at home with his parents and needs round-the-clock care after being diagnosed with a rare condition, myalgic encephalomyelitis (ME). May 12 is ME/CFS and Fibromyalgia International Awareness Day and the Galway man is keen to share his story so others can learn what the early symptoms look like.
“I woke up one morning in August 2013, feeling fluey with a bad sore throat and very swollen glands,” he says. “I went to the GP the next day and a blood test confirmed glandular fever, but I wasn’t concerned as I’d heard that most people seem to get over it quickly. But how wrong I was, because while some symptoms cleared up after a few weeks on steroids, an overwhelming fatigue remained and I found that performing tasks, which would normally be very easy, even reading, left me feeling exhausted and at times, unable to move.”
Gavin, who was in his second year of college at the time, continued to feel unwell and after several more visits to his GP, he tried to return to college. But it soon became clear that he couldn’t function, so he decided that he would defer his course as he believed he would be better after a few months of rest. However, his condition didn’t improve.
“My blood tests never showed anything out of the ordinary, which we now know is pretty normal for ME, and I remember my GP saying that I clearly had PVF, post viral fatigue, which could last up to a year,” he says. “I was referred to a consultant who started me on graded exercise therapy (GET) and cognitive behavioural therapy (CBT), which I now understand can cause setbacks.
“Over the years, I tried many alternative treatments including herbal medicines, biodynamic therapy, bioenergy, acupuncture, endorphin release therapy, vitamin B12 injections, CBD, antivirals, a nutritionist and more. The years kind of blur together so it is hard to recall everything. I do remember trying to return to college part-time in 2018 and managing my fatigue pretty well. But I had to stop my work placement as I had begun to get nausea and stomach cramps which set me back a lot and caused me to feel sick all the time.”
Gavin underwent more tests, including a colonoscopy but nothing was detected until a couple of months after his 25th birthday when he met a UK specialist who diagnosed ME. “After meeting this doctor from the UK, I was eventually put on the right track and it took nearly another six months to get my medication right, but it solved my nausea, a symptom which is quite common for ME patients” he says.
“By the time I got the diagnosis of ME, I had been ill for over five years, so it didn’t shock me. My mum had done the research and knew the symptoms, so we expected that outcome. We were just hoping that the doctor could give me proper ongoing treatment, and he did for nearly a year until we finally saw a neurologist in Galway who without hesitation, confirmed the diagnosis and now manages my daily symptoms and is constantly trying new medication for the chronic pain and migraine. However, I have never got any treatment for the root cause of ME.”
Although he was glad to finally have a diagnosis, life has been very hard for Gavin for the past seven years. “Constantly managing chronic pain and dealing with brain fog and memory loss is part of my normal now,” he says. “I can’t remember a time before I was ill. I’ve lost touch with the majority of my old school friends, but my family (mum: Edna, dad: Finbarr and siblings Ryan and Heather) have been invaluable, and I have a small group of mates who have stood by me, supporting me through this, despite, at times my not being fit to even reply to their text messages.
“My world has become so small. I live between a room with a recliner and a bedroom, going back and forth, I struggle sometimes to connect with what’s going on in the outside world. I can count on two hands the number of people, outside family, that I’ve interacted with over the last few years. And because I struggle to remember a time before ME and live day-to-day, I find it hard to imagine what a healthy life would be like. This is my new normal.”
Gavin believes that more understanding and awareness of ME is needed to help people like himself to get diagnosed early, which may positively impact their outcome. “There needs to be much greater empathy from the medical profession,” he says. “I want us to be believed and listened to, and therapies such as GET and CBT should not be recommended to us.”
“I would like to see people get an early diagnosis of ME, to avoid irreparable harm in the early months and years and to be informed about correct management strategies,” adds his mother, Edna. “To do this, we need an ME specialist consultant and those currently in practice to be re-educated to provide the evidence-based care which is informed by illnesses like ME.
“The Irish healthcare service and government needs to invest in the already established evidence-based research which is ongoing abroad and engage their expert knowledge to advice on an Irish ME policy so that as well as treating symptoms, we investigate the root cause.”
Edna is Gavin’s primary carer and says his life has been altered beyond recognition since developing the condition. “Gavin was always a very bright child, with a sharp wit,” she says. “He was an excellent swimmer and the two of us did a scuba diving course abroad together when he was 15. He also loved music and had a full drumkit in his bedroom as a teenager.
“But now, life has stopped. ME has changed everything for him. His siblings and his dad are triathletes, but he can’t walk around the garden. Before the illness, the world was his oyster — and that was gone in the blink of an eye. When I can see his younger siblings fulfilling their dreams, a big piece of my heart is broken as I can’t help him. I’m silent but screaming inside in frustration at the abandonment by the Irish healthcare system, and even though we now have some medics who listen to us, it has taken years and we fought hard to get here. It’s an uphill battle, yet now seven years on, not once has a doctor or healthcare person acknowledged that this must be a hard life for Gavin and our family, that they wish they could do more.
“There is no sense of outrage that there is no cure, just a general agreement that we must sit back silently in an ME-induced lockdown and accept that this is it, no Irish investment, no acknowledging that the ME community exits, out of sight, out of mind.”
Gavin is house-bound, and the family spend most of each day looking after his symptoms, alleviating his pain and administering bed massages and ice packs. But they are determined to try to raise awareness for the condition and Edna is currently undertaking a walking challenge in a bid to raise funds to help with much-needed research.
“I am fundraising for the research fund of Irish ME/CFS Association, mainly OMF (Open Medicine Foundation) research, in partnership with Dr Ron Davis and Stanford University team, where some very hopeful research is taking place,” she says. “I also hope to raise much-needed awareness on similarities between ME and long Covid, by getting our story out there.
“I have already walked over 500km in a four-month period. I started on December 12, 2020, and will continue until International ME/CFS Awareness Day on May 12, 2021, for my son Gavin and other ME sufferers. I have raised more than €9,000 and hope this increases as it is a very underfunded illness.
“In my opinion, the government and medical community have failed Irish ME families. People are sent home to research their own treatments, or worse, given incorrect advice with irreparable consequences. It is inhumane and my concern is that some long Covid patients could end up treated just as badly. We, as a nation, must effectively plan for a post-viral future.”
According to a spokesperson for the HSE, there is no clinical programme specific to ME but assessments, tailored to individual patient needs, are carried out in primary care setting by GPs. Specialised input may be required when considering differential diagnoses,” the HSE says. “Assessment and interventions can involve multiple speciality areas, depending on the individual’s specific needs and treatment is initiated based on the individual’s symptoms.
“Treatments relate to individual patient’s needs, ranging from, neurology, rheumatology, psychology, pain specialists, endocrinology, immunology, cardiology, rehabilitation medicine or occupational therapy. And there is currently no one centre specialising in this disorder.”
For more information visit imet.ie. To donate to Edna’s challenge visit idonate.ie/aMothersWalkforMECFSresearch
⬤ ME is an acquired complex disorder affecting multiple systems of the body.
⬤ It has been formally classified by the WHO as a neurological disorder in the International Classification of Diseases since 1969.
⬤ To date, there is no known specific medical diagnostic test to determine or confirm a correct diagnosis of ME nor is there any specific treatment which works for all sufferers.
⬤ The Canadian Consensus Guideline outlines that, for consideration of a diagnosis of ME, symptoms should persist for at least six months and include: fatigue, pain, sleep dysfunction, post-exertional malaise.
⬤ It should also have at least one of these symptoms:
⬤ Autonomic manifestations (e.g. lightheaded-ness, nausea)
⬤ Neuroendocrine manifestations (sweating etc.)
⬤ Immune manifestations (tender lymph nodes, sore throats etc.)