Gary Campion (38), from south Belfast, had a career in PR and tour management in London for many years, working with groups like The Saturdays, Girls Aloud, Mel C and Liberty X, before returning to Northern Ireland.
He developed ME following a serious equestrian accident - in which he also suffered a serious leg injury - and was diagnosed by a private doctor four years ago. The condition has seen him go from enjoying working out at the gym five days a week and running the Belfast marathon to suffering from debilitating fatigue and pain.
One of the key symptoms for Gary is extreme pain in the brain. "It is not a headache or migraine," he says, trying to describe exactly how he feels. "It's like my brain is on fire at times. I can't concentrate and I can have trouble finding words mid-conversation - as someone who was a born communicator, it is extremely frustrating at times."
Other symptoms include bodily spasms, problems regulating body temperature and an inability to tolerate light and sound.
"On my worst days, I always say, if you can imagine having the worst hangover of your life along with the worst flu you've ever had and then someone asks you to run a marathon, how would you feel at the end of that?" he asks.
After the symptoms began to appear, doctors embarked on a lengthy diagnostic process, eliminating possibilities such as Parkinsons, MS and fibromyalgia, but it was only after Gary contacted Hope 4ME Fibro NI founder Joan McParland that she put him in touch with ME expert Dr William Weir and the mystery illness was diagnosed.
ME remains a very misunderstood illness and some doctors don't even believe the condition exists - a view that is both controversial and, says those with the condition, extremely frustrating. "I've heard of people going to the doctor and their doctor just throwing antidepressants at them and telling them to go to the gym," Gary says.
What makes it even more challenging is that many sufferers have little faith in the recommended treatments for ME - a combination of Graded Exercise Therapy (GET) and CBT therapy - yet they remain as official NHS recommendations. Meanwhile, the National Institute for Health and Care Excellence (NICE) is reviewing its guidance on the diagnosis and treatment of the condition.
He says he is lucky not to have undergone the full extent of GET, but says it did put him in hospital for three weeks.
"While I was in hospital, one of the doctors told me he didn't know what was wrong and there was nothing he could do. And he said I should enjoy my retirement and start watching Jeremy Kyle. At 33 years of age, that's not a nice thing to hear," Gary says.
He says his GP has been amazing and has been taking advice from Dr Weir. Managing the illness requires a host of measures, from two hour naps to using a gravity blanket, along with a sleep mask and ear plugs, pain medication and supplements, heat packs, and medical massages to deal with the painful muscle spasms.
Coping with the fallout from his illness has been difficult. "Financially I had some money saved from before my accident but once that dried up I had to swallow my pride and apply for disability and sickness benefits ESA and DLA which in itself was challenging, mentally, and emotionally draining," he says.
And trying to get back ti work as been "a major challenge". He says: "I can't work full-time. I didn't work at all for the first few years and I still had the leg injury and pending surgery to contend with."
Gary is thankful that he works part-time as a suit specialist for an understanding employer who allows him to work in four hour shifts to accommodate the illness. "I wouldn't say I have recovered from ME but I've learned how to manage the symptoms and to plan my life/work around a technique called pacing - four hours at work equals two hours nap. If I've got plans with family or friends I need plenty of rest days before to reserve the energy and after days of rest to recharge so to speak.
"It's great to get me out of the house and have some human interaction and a bit of normality. I don't see it as a job so much as something that gets me out for a few hours," he says.
Former school meals supervisor Joan McParland, from Bessbrook, has had ME since 1999 and is the founder of Hope 4 ME & Fibro Northern Ireland. She is married to HGV driver Thomas and they have one son, Stephen (32).
"Overnight, I went from being 100% well to waking up severely disabled," she says. "Sometimes I'd have picked up a tummy bug off the kids at school but this was different. It felt like food poisoning, flu and a tummy bug."
The doctor thought it might be viral labyrinthitis (an inner ear condition) and warned Joan that she could be off sick for six weeks. But she ended up bed-bound for 12 months.
"Calling this disease chronic fatigue syndrome or extreme tiredness is an insult to ME patients and very far removed from what I was experiencing," Joan says.
"I was crawling on my hands and knees to get to the bathroom and my husband used to carry me to the living room to break up the monotony of being bed-bound 24/7 for the first year.
"I was too weak and too nauseated to eat, so I suffered a dramatic weight loss and effectively looked like I was dying - and it most certainly felt like it too. The whites of my eyes had turned yellow, as had my skin, and the most frightening experience was the almost daily periods of transient paralysis, when I couldn't speak or even turn in my bed for hours at a time.
"The onslaught of symptoms included muscle weakness, dizziness, nausea, headaches, fainting, digestion problems, new food and medication allergies, alcohol intolerance, muscle and joint pain, sensitivity to light and noise, an inability to be upright due to orthostatic intolerance and cognitive symptoms including short term memory loss and confusion."
Her doctor suspected it could be ME but, because there was no ME specialist in Northern Ireland, Joan had to be driven to a variety of consultants to investigate her individual symptoms.
She was even advised to go to a psychiatrist and did so: "I learned how to do deep breathing and that was it - I was left none the wiser."
After a year, her symptoms began to abate a little and Joan decided to push through the pain and fatigue and return to work.
"I staggered my way back to work, drinking down bottles of anti-nausea medicine just to try to stay upright. I tried reducing hours, going straight to bed when I got home and spending every weekend in bed until the following Monday morning started again," she recalls.
"The illness finally beat me again and again and, over time and three collapses later, the result was being trapped in my bedroom for the following seven years.
"Those years were spent without a choice of doing anything, except trying to figure out what had gone so horribly wrong that I'd lost my career and social life and, most importantly, I could no longer care for my family."
After her family bought her a laptop, Joan began researching ME, learned about a self-management regime called pacing and began using a heart rate monitor to manage symptoms.
"Over a further three-year period, I very gradually improved enough to be able to be upright for a few hours most days. I quickly learned that if I tried to push outside this small 'energy envelope', I would quickly relapse and end up completely bed-bound again," she says.
"It's the hardest thing in the world to rest when there's so many things in life you want to do, but the consequences to an ME patient are horrific, if you don't listen to what your body is dictating."
In 2011, Joan set up Hope 4 ME & Fibro Northern Ireland which campaigns to address gaps in ME healthcare provision and knowledge in Northern Ireland. ME is still not included in medical training.
The charity is calling on the Health & Social Care Board and Public Health Agency to help circulate a new CPD Accredited ME Training Module, and is completing a booklet on managing ME in a joint project with a group of UK NHS physiotherapists.
"No doctor wilfully goes out to cause harm but ME is an example of why and what happens when science just hasn't caught up," Joan says. Joan says she is optimistic about the new research project.
"It's given us hope that the Medical Research Council is investing money into the physical aspects of the disease, rather than the psychological aspects," she says.
"I'm very optimistic because the Holy Grail for us is a diagnostic marker that will take away all this disbelief - you're constantly trying to prove this disease is real."
Former charity manager Paddy Bateman (40), from Bangor, was diagnosed with ME in 2014 and runs the It's Not All About ME podcast. He is married to Maggie and they have a 10-month-old son, Beckett.
He believes he has been exhibiting symptoms of the illness as far back as his late teens: "I've always been kind of sickly and I would get flu-type symptoms almost every month - you could set your watch by it," Paddy says.
"It's mostly fatigue we're talking, absolute exhaustion and brain fog - not being able to speak, not being able to process any input as well as massive muscle pain."
For some years, Paddy managed to push through in work, driven by nicotine or caffeine, and supported by understanding employers. But he admits the illness badly affected attendance and eventually he could no longer get through a working day.
He was finally able to consult a private doctor and ME was diagnosed. "I remember opening the letter and it stated that I had ME - I was massively relieved. I was like 'all these years I've known something was wrong with me but people kept saying it was fine'," he says.
However, that relief was tempered by the discovery that there was little treatment for the condition.
"I figured if you can give it a name, you can fix it. But giving it a name doesn't really matter all that much," Paddy says.
"When I first got it, I was really vigilant. I tracked it - I had spreadsheets of all these really detailed figures of what I was doing, writing it down and trying to track when I did exercise and whether it was post-exercise fatigue.
"I tried CBT because the doctor told me to and also Graduated Exercise Therapy but neither worked for me. It didn't do anything to alleviate my condition.
"I'm down to the point where I am trying CBT oil and a bed of nails which someone has recommended. I have tried everything else. I haven't found anything but I'm always eager to hear from other people.
"My dream is to get back to work. I loved what I did for a living and I was pretty good at it too. I want to have a normal life. I'm not one for sitting around and being ill, but sometimes I don't have a choice and I am in bed for weeks at a time and not able to move."
Paddy says that when his symptoms abated he tried to push through, doing the Couch to 5K running programme and even running the Rome marathon. But a month later, he was bed-bound once again.
"That is the crazy thing about this illness - I was able to do that, but two to three years later I am back in bed and not able to do very much at all. It's really put my recovery on hold for a long time and has put me in reverse," he says.
Paddy set up the podcast in a bid to understand his illness and is now attracting thousands of listeners from all over the world.
"There is a sense of hope there. I always ask the people on my podcast if they have hope for themselves and they always say yes. It's quite amazing to me, the strength of people who have lost everything else," he says.