The estimates for those with ME/CFS in New Zealand have risen sharply. Danny Rood shares his personal experiences of living with the illness for six years, and what eventually helped improve his quality of life.
Note: The headline of this article has been changed to reflect the official name of the illness ME/CFS.
You may have heard of Myalgic Encephalomyelitis, or chronic fatigue syndrome (ME/CFS), a debilitating and exhausting disease bringing immense tiredness, pain, and the inability to do things you once could. Estimated numbers of ME/CFS patients in Aotearoa have risen from roughly 25,000 to 65,000 in recent years. Having had the illness for six torrid years, I wouldn’t wish it on anyone.
There are many misconceptions about ME/CFS. It’s a very real illness, certainly not “all in your head”. The effects are soul destroying and vary from person to person. Think of it like how your experience with Covid-19 was different but similar to a friend’s. A runny nose for you, a razor sore throat for them, and brain fog for you both. You bounced back in three or four days, they took three or four weeks or even longer, but it was all Covid. For some, ME/CFS has them bed bound, requiring full-time care. For me, it was living in an exhausting, painful, anxious fog combined with a bad case of jet lag. The disease is diagnosed by elimination with no single cause, but the misery is felt intensely.
What is also true for many is recovery is possible, albeit difficult. I am not here to prescribe anything, dismiss people’s experiences, or exude toxic positivity. What I can do is share my story and provide some hope that others may need battling this wretched disease. It is not a case of “you just do this one thing and you’ll recover!”. Yes, I tried supplements. Yes, I tried meditation. Yes, I tried perineum sunning. OK I didn’t do the last one, but you get the idea. Some things, like quitting alcohol and caffeine, were helpful but limited in what they could achieve. I never felt more than 70% of “old me”. On the worst days, I would literally crawl upstairs after a simple task like checking the mail, then spend the day in bed managing pain and exhaustion. Any extra exertion resulted in flare ups, where symptoms would take off. All of this made me quite irritable, anxious, scared, sad, confused, and angry. This smiley guy who would bounce from one thing to another was now a human husk.
The spiral
It was 2017. I was working in a government job I thoroughly enjoyed and did photography on the side. My wonderful friends helped me enjoy life. I was quite fit, cricket in Wellington’s mercurial summers, rugby in moody winters, running, and gym to stay active. The movement continued after hours, socialising and drinking into the wee hours, the candle burning at both ends. Come mid-year, my typically animated self wasn’t quite right. After more than two beers I would get a cold or illness. During one rugby game, I had an easy 10 metre canter to score a try but was dragged down well short. That was weird, I should have scored. Why so sluggish? My eyes were often bleary, and I became fond of naps. Blood tests showed I had had glandular fever, a viral infection caused by the Epstein-Barr virus. It’ll come right, right? Everyone is a legend with hindsight, but I should have rested for a month instead of a week.
Things improved. In October, I had a wonderful hiking holiday in Patagonia. I got stuck into the engagement work for the Zero Carbon Bill, an incredibly rewarding and fascinating time. By mid-December, I knew something was very wrong. The best way to describe it was that I felt like I was melting. My legs were hot and heavy, and I was shattered. The desire to sleep was everlasting. Doctors suggested post-viral fatigue from glandular fever, and a few weeks off over the festive season would help.
It was a 30-minute walk from my Oriental Bay flat to the office. Come January, I couldn’t do it. It was too exhausting, so I chose to preserve energy for work, T20 cricket, and the Milford Track in three weeks. My new routine was to bus in, work eight to 10 hours, bus home, go to sleep for an hour, do nothing, then sleep for eight hours. Repeat. And I was still exhausted and sore. I thought “this sucks, but it’ll go away at some point”.
Day three of the Milford Track sees you tackle the majestic McKinnon Pass; 500m elevation gain followed by a 900m descent. Once that was done I was, to put it lightly, fucked. Completely. One friend doing the track with me said “you look like you’ve been in a war”. Everything hurt. Searing pain engulfed my legs. My mind was a flurry of knots. My breath was racing. The melting sensation returned. Did I need to be lifted out? Somehow, I finished the hike and returned home to the bus-work-nap-nothing-sleep-still exhausted routine.
I limped through 2018, running on fumes. I had developed chronic pain in my thighs, which felt like I had been continually beaten. Painkillers, compression tights, lie downs, and electrolyte drinks made things a little better, but I was still in a lot of discomfort and always exhausted. I couldn’t concentrate properly, like I was jetlagged. Frustration and anger joined the party, which hardly made for good Christmas dinner guests.
Things came crashing down in January. On my brother’s birthday, we headed out for a family dinner. By now, I was so anxious I could barely function. The walls felt like they were closing in. As mothers often do, mine spotted something was off. She asked with concern “Danny, are you OK?” to which I squeaked “no”, burst into tears and bailed outside. I cried in the car, saying “I don’t feel like Danny any more”. A trip to Wellington afterhours and a very kind doctor helped mum and I understand the anxiety attack, and how the body and mind are linked when it comes to health. Your body can hold onto stress you experience, and I had experienced a lot of it. I was nearly 9kg lighter than I was just over a year ago. He suggested I talk to a psychologist, my doctor about anti-depressants, and come up with a proper plan for my wellbeing.
A diagnosis or two
The psychologist and medication certainly helped, but the exhaustion and pain continued. In November 2019, after nearly two years of no answers, a Wellington rheumatologist diagnosed me with Chronic Fatigue Syndrome. Learning that it is a spectrum of sorts, I was not the worst case possible but was certainly in a real battle. I could do more than some but definitely not live a “normal” life. Time in the bush or the ocean was soothing and gave me a minor boost, just enough to manage a few days of hiking once a year. But boy, I paid for it, taking two to six weeks to recover. I needed that time in nature, though. That’s where we evolved, after all. It also let me photograph our natural world. Some joy there, at least.
Fast-forward to 2022, I was managing ME/CFS relatively well with an enjoyable new job in Ōtautahi Christchurch. But I was still battling, and had maxed out at about 70 per cent recovered. I redid the Milford Track, and was sore but smiling as I got off the Mackinnon Pass this time. The five-week flare up afterwards reminded me I had some way to go.
Trending upwards
By mid-2023 I had met a few people who had recovered from ME/CFS. I started to hope. Maybe I could, too? They pointed me to the increased understanding in modern neuroscience and chronic illness. This article helps explain how chronic illness makes the central nervous system not work as it should.
I was a bit sceptical of going on a course about this topic, but what did I have to lose? An improvement to 80% of “old me” would still be a win. For too long, I had been stuck in illness management mode and not recovery mode. I had carved paths in my brain as a stress response, but they were so prominent I became stuck in fight or flight mode. The Body Keeps the Score, after all. My understanding was that if I could close these pathways, and create new ones then this could help improve things.
A combination of things worked for me with big gains from the neuro-linguistics course, which required a lot of work with some confronting moments as well. Neuro-linguistics courses have caused controversy in New Zealand, and yes they are expensive, and have been advised against as a “cure”. So,I am not suggesting that every chronic fatigue sufferer would be magically cured if they paid for this course. But for me, who has lived a life with incredibly high physical and personal expectations of myself, being made to confront those parts of myself and working to reframe my condition proved a helpful tool in my recovery arsenal. Not everyone on the course made the same progress I did, in the same way not all medications, antibiotics or therapy are helpful for everyone.
Calming my body with extensive breathwork, dozens of times a day, also helped. My lifestyle and approach to day-to-day things are very different from the 2005-17 Danny model of go go go. Te Whare Tapa Whā model wasn’t taught in my Pākehā upbringing but is now a foundation. My new thought process for my wellbeing helps identify:
What works? What works for me? What works for me right now?
I’ve stopped trying to perfect everything, knowing eight out of ten is usually good enough. I quit drinking for three years, then dabbled briefly in 2024. I’d be hungover from one beer, so am now nine months sober again with a clearer head and sleeping eight hours regularly. Caffeine is an energy loan shark for me, so that is mostly binned off except for long drives. With careful increments, more therapy, and realising that health isn’t just running times or bench press PBs, I am about 95% recovered.
I would say I have the ME/CFS dregs, a bit like scar tissue. I rarely overexert myself and carefully choose what to value in my life. Progress is not linear. I still have some tough days and need to identify what stressors are causing that. Last month, after 18 months of very carefully increasing mileage (starting at 200 metres), I ran 10km around Hagley Park. It took bang on 60 minutes. Back in 2017, my goal for the Wellington Round the Bays 10km was sub-50 minutes. I was 19 seconds over and furious for a week, blasting myself for it. Now, instead of being furious, I am elated. And in a funny way, grateful for the hip injury I picked up from that run and the physio sessions that come with it. Health is a work in progress, after all.
