Post-viral illness thrust centre stage

People leave a train at the Victoria tube station as Covid-19 rages in London this week. PHOTO:...
People leave a train at the Victoria tube station as Covid-19 rages in London this week. PHOTO: REUTERS
While Covid-19 has not seriously ravaged the fair shores and lofty heights of Aotearoa, it has spread far and wide in the United Kingdom.

Having lived there since the start of the pandemic, I have seen many friends succumb to the horrid virus. Most of my friends are young, fit and healthy. Unsurprisingly therefore, most have recovered wholly from the illness. But there are those who, previously healthy, remain exhausted months after they contracted coronavirus. Still suffering from spells of dizziness, post-exertion malaise, nausea, aches and pains, and unending tiredness, they try to go about their normal lives.

They’re not the only ones still suffering the impact of coronavirus long after initially developing symptoms. You may have heard of the phenomenon called "long Covid". It’s believed that some 10% of Covid-19 patients develop lasting symptoms. It’s unclear as to what exactly causes this prolonged illness, but some explanations put forward include muscle weakness from prolonged bed rest and reduced oxygen supply to tissues caused by heart or lung damage.

The story of post-viral fatigue and pain is one I am deeply familiar with, having developed ME/CFS (myalgic encephalomyelitis, also known as chronic fatigue syndrome) following a particularly nasty bout of glandular fever in 2014. Indeed, Dr Anthony Fauci has issued multiple warnings about the risk of Covid-19 patients developing ME/CFS. As with ME/CFS patients, Covid "long-haulers" experience fatigue, headaches, a racing heart, joint and muscle pain, brain fog and sleep problems. I can’t help wondering whether the underlying pathology of long Covid and ME/CFS is the same. I am not however an expert in immunology or infectious diseases.

Yet while long Covid and ME/CFS are so similar, if not identical, the response to both illnesses couldn’t be more different. In England, for example, 40 clinics are being set up for long-Covid patients, and research funding for the illness is large and free-flowing. Yet it took four years for me to receive a diagnosis of ME/CFS, after being airily dismissed by countless doctors as merely suffering from depression or laziness.

I agree with Prof Christopher Norton, writing for the Guardian, who states that "for decades ME/CFS sufferers were ignored, dismissed as hysterical and generally failed by large sections of the medical community and the NHS". Despite affecting around 15million people worldwide, ME/CFS has been largely disregarded by the medical and scientific spheres. I have no doubt that every single ME/CFS patient at one point or another has been informed by a medical professional that their disease is "all in their head".

It was only in 2015 that the Academy of Medicine of the National Academy of Science in the United States published a comprehensive report that ruled ME/CFS was not psychologically based, and that sufferers of the disease deserved serious medical consideration. Despite the official recognition of ME/CFS, there is little medical and social care support for sufferers, and very little public research funding.

This is not to say that we haven’t had superheroes devoting their life and career to studying ME/CFS. Dunedin’s own Emeritus Pro Warren Tate has long fought for ME/CFS to be recognised and taken seriously by health professionals and social agencies.

An article titled "Confronting the pathophysiology of long Covid" in The BMJ examines the additional complications and uncertainties of this illness. For one, many of the risk factors for severity of acute Covid-19, such as "age, male gender, obesity and ethnicity, do not explicitly appear to enhance the chance of long Covid".

Moreover, there appears to be little correlation between the severity of the acute disease and long-term outcomes. The authors also predict that many sufferers of long Covid had such mild symptoms of the disease initially that they "did not access a PCR test, and so have no formal health record evidence of Covid-19".

I wonder whether long Covid will be treated any differently from ME/CFS in the long run. I hope the former continues to be taken seriously by the medical establishment, and that sufferers are not provided with dangerous misinformation that I and so many other ME/CFS sufferers have received.

Regardless of whether long Covid and ME/CFS are the same illness or not, high-quality and ambitious research is necessary into post-viral lingering diseases. We need to tackle the question of why some people recover swiftly and easily from Covid-19 and other viral illnesses, whereas others do not. How can we best help those afflicted with post-viral illnesses? How might we establish recognised criteria for a working diagnosis of long Covid? What are the risk factors? How might we better facilitate access to appropriate healthcare and social support services?

I firmly believe that ME/CFS sufferers have much wisdom to offer long-Covid patients. We, who have lived with debilitating pain, fatigue, nausea, aches and the like for years, might be able to offer advice regarding coping strategies, available support systems and access to healthcare services.

Covid-19 is not a mere flu or mild, short-term illness. You might not die from Covid-19. But you might be irrevocably damaged and suffer from significant long-term health complications. Is complacency a risk worth taking?

Jean Balchin, a former English student at the University of Otago, is studying at Oxford University after being awarded a Rhodes Scholarship.

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