Gez Medinger Photo: supplied
One in ten people who test positive for Covid-19 develop Long Covid, immunologist Danny Altmann told RNZ a couple of weeks ago.
His recent book The Long Covid Handbook was co-written with a Long Covid patient - the filmmaker and former marathon runner Gez Medinger.
Gez tells Kim Hill that since developing the condition in 2020 he hasn't been well enough to return to film sets or exercise.
"Nothing has ever given me the level of crushing systemic fatigue that Long Covid has dished up."
Listen to the interview
People at risk of developing Long Covid are often young-to-middle aged, healthy, fit and active. Gez says.
"I collected some data on this and two-thirds of the people in my sample exercised vigorously at least four times a week.
"This was a sample of 2000 people so it's relatively indicative of what the proportion of LC sufferers look like and it does seem like these were people who were very very active. I think only two percent of them weren't active day to day."
These seem to be people who, before developing Long Covid, moved through their lives at break-neck speed, Gez says.
"If you imagine your stress level, your energy level like a car's tachometer, right, you're sort of revving yourself into the red the whole time but you get away with it for long, long periods until a once-in-a-century virus comes along and suddenly the engine explodes ... and then you're in all kinds of trouble.
"Maybe the people that didn't run their lives into the red the whole time can actually find their systems essentially fall over after infection with this novel virus."
At first, Long Covid is a blow not to people's immune systems but to their nervous systems, he says.
"The nervous system basically gets stuck in fight-or-flight as a result of you spending too much time there previously. It now loses its ability to operate and go into rest, digest and heal, which is the parasympathetic [nervous system's function].
"Then the immune system gets switched on and is constantly on. What we're seeing with Long Covid is a hyperactivated immune state, rather than one that's depleted."
Unless a person gets rashes or skin discolouration, Long Covid is an "invisible illness", Gez says, but an inability to exercise is all too real.
Two weeks after testing positive for Covid-19, he went back to running 30-40 kilometres a week.
"I was like 'I'm gonna go really slow, I want to be really careful coming back from a virus' … and I felt terrible after each run."
Two-thirds of Long Covid sufferers Gez spoke to for his survey could identify a specific period of overexertion that seemed to trigger their symptoms - often, like him, in the first two months after they'd tested positive for coronavirus.
Rushing back to cardiovascular exercise so soon is something Gez now regrets: "I might have got away with it if hadn't done that. I might not have developed Long Covid."
Long Covid isn't a condition you can "exercise your way out of", he says, and for many people, it's actually one of the worst things you can do.
Post Exercise Malaise (PEM) - a side effect of Long Covid - manifests differently for every individual but can worsen symptoms, Gez says.
To him, PEM feels like a turbocharged version of the "crushing systemic fatigue" that Long Covid has delivered.
"You don't even have enough energy to watch TV because you can't process that information. Your entire body and your brain is just splattered."
Gez says that now, if he's careful, he can work from home for most of the day.
"But if I've got to go somewhere, the energy cost of that blows everything out of the water and [leads to] a lot of other really unfun symptoms, too. So I'm still sort of some way short of a human being."
Long Covid sufferers range from people who are not quite what they used to be before contracting the virus to people who are bedbound and can't tolerate any form of stimulation, conversation, light or sound.
Photo: Mikhail Nilov / Pexels
Pacing is very important for people with Long Covid, Gez says, particularly those who feel exhausted for a day or two after they exercise (rather than during and immediately after it).
Spoon Theory - in which a person has a certain limited amount of spoons to spend in a day - is a good way to manage your daily energy expenditure, he says.
"Every single activity or everything you do will cost a certain number of those spoons so you have to plan out what you're going to do in your day.
"Taking a shower may take three spoons, preparing dinner might cost two spoons, having a conversation with your mother for an hour might cost you five spoons ...
"Everybody has a different thing that they struggle with that demands energy so you have to learn it yourself."
"You've got to understand what the energy cost of doing any particular activity and be very mindful of that. Don't try and overspend your spoons.
"You kind of build up an idea of what will be sensible and safe and you try not to go too close to the limit."
Because people's experiences of Long Covid are so different, there is not much to recommend treatment-wise, Gez says.
Some people find acupuncture and manual stimulation via The Perrin Technique helpful. Antihistamines alleviate some people's symptoms, he says, while Vitamin B3 and nicotinic acid help a lot of people but not everybody.
He says anything that helps calm the nervous system - including his own YouTube channel - is generally a good idea.
Doctors, who have varying attitudes to Long Covid, aren't yet able to offer much help to people with symptoms other than headaches and rashes, Gez says.
"Theyre still practising in a world that is evidence-based and we don't yet have the body of evidence for x drug that's going to sort this out… it's going to be a little bit of time before doctors are able to offer a huge amount of help.
"If you go in and say 'I'm suffering with this symptom' you may get a better result than if you go in and say 'I've got Long Covid."
Children can develop Long Covid, Gez says, and it can affect their mobility, cognition and communication. He encourages people who think their kid might have it to visit the LC kids website.
While academic research tends to happen at a "glacial pace", he says, the potential overlap between Long Covid and the complex disorder ME/CFS needs further exploration.
He has a "twitch" when people speak of a 'cure' for Long Covid, though.
"I'm not sure we're ever really going to get a magic bullet for it. I think it's about trying to create the right environment for your own body and mind so you can help the body recover.
"That's a better attitude to have towards it than searching for the next magic pill that's going to do the work for you. I don't think we're that lucky, unfortunately."
When Gez contracted Covid-19, he flashed back to being sick with glandular fever for a year while at university.
"I thought 'oh god, I'm feeling the same. I might be looking down the barrel of being sick for another year or more after this."
Three months later, guessing that he wasn't the only person struggling, Gez created his first film about the science of Long Covid.
When he posted it on his YouTube channel, he says thousands of people responded with 'yes, me too'.
"I was slightly surprised by the scale of it but I wasn't surprised it was a thing… and then I went tumbling down the rabbit hole like Alice. And I haven't really come out, to be honest. I'm still in wonderland.'
Gez Medinger has a series of videos about Long Covid on his YouTube channel.
Long Covid Support Aotearoa (LCSA) - a website created by University of Auckland researchers and independent contractors - has a symptoms list and a Facebook support group.
LCSA are seeking New Zealanders with self-reported Long Covid to sign up to their Long COVID Registry and take part in the research project Mātauranga Raranga.
Some of Gez Medinger's recent videos: