By Christopher Carter, Chief Executive, North Western Melbourne Primary Health Network
For a still-unknown proportion of people, even a mild case of COVID-19 can carry an unfortunate twist in the tale: a new set of symptoms, sometimes severe, that can persist for months. Some, such as brain fog, seem quite common, while some others are rare. Some come and go, others stay for a very long time.
This is known as long COVID, or sometimes ‘post-COVID-19 condition’, and it can be a real problem – not least because doctors and researchers around the world are still struggling to agree on what it is.
Does that sound familiar? Readers might be reminded of another condition, known as chronic fatigue syndrome, or myalgic encephalomyelitis, which produces extreme tiredness and can leave sufferers homebound, even bedbound, sometimes for the rest of their lives.
To make matters worse, for years after reports of the syndrome first emerged in the 1980s, many people – even some doctors – simply refused to believe it was real. It was a psychological issue, they said, or worse, an excuse for malingering.
Today, chronic fatigue syndrome, abbreviated to CFS/ME, is recognised as a devastating illness – although its exact cause remains unknown. There is no cure and precious few useful therapies.
This comparison is particularly pertinent, because, as one medical journal recently put it, a significant number of people with long COVID have symptoms “suspiciously similar” to CFS/ME.
These patients report reduced ability to perform usual daily routines, and extreme tiredness after physical or mental activity. Many also experience sleep problems, loss of memory, and poor concentration.These continue at least for many months, but it is too early to know whether, like pre-pandemic CFS/ME, they may be permanent.
Not everyone who develops long COVID will have chronic fatigue syndrome, of course. Many people report other symptoms, such as shortness of breath, palpitations, or temperature fluctuations. While not unknown in CFS/ME, they are not considered tell-tale signs of the condition.
Of course, a big part of the problem is that there is no universally accepted clinical definition of long COVID yet, because it is still a relatively new thing and most COVID-19 research over the past couple of years has focused on preventing or treating severe disease in the first phase.
The World Health Organisation says long COVID often features “fatigue, shortness of breath, cognitive dysfunction … usually three months from the onset of COVID-19 with symptoms that last for at least two months and cannot be explained by an alternative diagnosis ”. Research is under way around the world, trying to add a bit more meat to those bare bones.
In the meantime, what can you draw from this? The main thing is that if you feel inexplicably tired for several months, a COVID-19 infection a few months earlier, even a very mild one, might be significant. Talk to your GP.
And the other thing is, be kind to yourself. That exhaustion you feel is real.
