Researchers are pointing to a “hidden toll” of the Covid-19 pandemic, saying many patients are reporting debilitating fatigue months after their initial diagnosis.
They say some of the symptoms of what’s currently known as ‘long Covid’ mirror a debilitating condition, seen in other viruses in the past, known as chronic fatigue syndrome or ‘ME’.
The little-known and mysterious illness, myalgic encephalomyelitis, is usually preceded by a viral infection and can last for years.
Sufferers experience what’s known as a 'post-exertional malaise', where a small amount of exercise leaves them bed-ridden for long periods, and can struggle to work or perform everyday tasks.
Otago University professor Warren Tate, who has studied ME since 2011, says the condition matches many of the ‘long haul’ symptoms reported by Covid-19 patients.
He says ME can come on after a “dramatic immune response” where the body fails to recover properly, with symptoms including fatigue, bad sleep, pain, cognitive difficulty, brain fog, allergies, gastro-intestinal effects, and more.
“Normally the clinical case definition for ME/CFS is it has to persist for six months, so we are now just getting to the point where some of the people who caught the Covid virus in March or April are getting to a six month period,” he says.
“It is likely that these people are suffering from, certainly an illness very like ME/CFS, and it may come into a sort of cluster, if you like, of subgroups which could be classified under the ME/CFS name.”
While it’s too early to know if it’s the same thing, many of the symptoms are familiar to ‘long haul’ Covid-19 patients, who are campaigning for the medical profession to take their ailments seriously.
A campaign dubbed the ‘Long Covid SOS’ has been established in Britain, claiming thousands of patients have been experiencing symptoms like exhaustion, brain fog, fever, insomnia, headaches, muscle pain, memory loss, nausea, palpitations, dizziness and an ongoing cough.
Organiser and Covid survivor Lere Fisher says he is still exhausted, despite being diagnosed some six months ago.
“With Covid, and the long haul symptoms that we have, it’s literally hour to hour, which means you can’t plan anything,“ he says.
“You might be fine in the morning but by 12pm you’re knocked out, so every day is a different day. You could arguably say it’s a bit like a cocktail, you just don’t know what it’s going to be on a daily basis.”
His experience is echoed by medical doctor and infectious diseases expert Dr Paul Garner, who also caught Covid 19 back in March, and continues to struggle with everyday tasks six months later.
“I've got the problem with the fatigue, and brain fog, so I can now read a page, until about 2 weeks ago, I really couldn't read anything, it's very disabling illness,” he told 1 NEWS.
“If you overdo things, if you go back to your normal life, or you walk down to the shops too briskly, or you get on a bicycle, it puts your heart rate up, and I'm thrown back to bed for days, I mean it's absolutely extraordinary.”
Both men were reluctant to say they had developed ME, saying it was important not to self-diagnose, but said they recognised many of the symptoms of the condition.
The illness has had a fraught history as it was denied for some time and has met resistance from some doctors in the past, who believed to be a mental or psychological problem.
That element has been studied extensively by New Zealand researcher and the senior lecturer in psychology at Victoria University of
Wellington, Carolyn Wilshire, who says it should be treated as a “significant medical problem”.
“These problems are serious, and they're real, and it not helpful for people to be told that it's all in their head, and they just need to get out more, and exercise and it will all be okay,” she says.
The trained psychologist says ME can be an “extremely debilitating and very long lasting condition”.
“We don't know a lot about how this condition lasts, but many patients continue to experience problems for decades after their initial onset of the symptoms, so there isn't a lot of clear evidence that the problem goes away quickly, certainly not within a year or two years,” she says.
“And most people who show improvement continue to show problems way longer than that, so they may show improvement allowing them to return to function at some level, but they will continue to have symptoms at some level.”
A core issue is that there hasn’t been much research looking into the condition, with the cause still largely a mystery, and no known cure at this stage.
Those who are currently suffering from ME, like Christchurch resident Hannah Read, are all too aware of the toll it can take.
The young woman had to give up her career after developing glandular fever from a viral infection three years ago and now spends most of her time at home.
“I was very much happy where I was in life, and where I was planning to go with my career and my friends, and family, to now not being able to even plan for a week in advance,” she says.
“I have been averaging about 14 hours of sleep a day, which is non-restful, I don't wake up feeling refreshed like most people do.”
She says acceptance is “the most difficult thing” as she now feels like a completely different person, looking back on an old life or “someone else's life entirely”.
Her advice to anyone going through it for a first time was to “be kind to yourself”.
“Reach out to the people who you trust and who can understand your situation,” she says.
“It's okay to not be able to do what you thought you could do, sometimes you don't have control over your body and the way that it functions can deteriorate, but that doesn't make you less of a person.”
With no answers on the horizon, patients are now left to hope that new research is on the way.