Joe Farrington Douglas

Joe Farrington-Douglas

Can long COVID shift attitudes towards chronic fatigue?

5 May 2022

As long COVID shares many of the same symptoms as ME/chronic fatigue syndrome, there’s a chance that society’s approach to chronic illness and fatigue can finally change.

‘What if I never get better?’

This thought must have passed through the fevered minds of many who have caught COVID-19, including the 3 million people in the latest UK weekly estimates. For an unlucky proportion, COVID-19 is developing into chronic symptoms that include fatigue.

The reality of ‘long COVID’ emerged when some people continued to suffer complications and symptoms for weeks, then months, now turning into years. As the majority recover and move on, health, research and wider societal policies must respond humanely to their needs – and those of hundreds of thousands also suffering from long-term fatigue known as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

The Office for National Statistics estimates that 1.7 million people in the UK are currently suffering from long COVID and it is now attracting media and research attention, being seen as a novel issue. Professor Danny Altmann, an immunologist at Imperial College London, told the World Health Organization that health systems could have as many as 10 million to 20 million people with long-term COVID to manage worldwide, with ‘massive ramifications for the lives of those affected and for healthcare planning’.
 

Chronic fatigue syndrome is a recognised condition

Postviral, chronic fatigue is not a new phenomenon. It was a living reality affecting 265,000 in the UK living with ME/CFS prior to the pandemic. Its symptoms are in many respects the same as those of long COVID. It normally starts with a viral infection, but the person does not recover.

It’s extraordinary how many people have a postviral syndrome that’s strikingly similar to myalgic encephalomyelitis/chronic fatigue syndrome. They just don’t get back to normal energy or a normal feeling of good health.

Anthony Fauci MD, Chief Medical Advisor to the President, US, July 2020

I knew a 39-year-old mum of three who caught a virus that made her really ill. Week after week passed with no real recovery, but she had to carry on looking after the family. Our language is full of maxims telling us to master our bodies – ‘mind over matter’, ‘just shake it off’, ‘it’s all in your head’. In this woman’s case, pushing herself led to her health completely breaking down: extreme fatigue, migraines, deterioration in eyesight, profound weakness, brain fatigue.

This woman – my mother – suffered deteriorating postviral ME/CFS. Increasingly, she became bed bound, hardly able to walk, and in pain when sitting up for more than 30 minutes. Although ME/CFS isn’t meant to be fatal, it can wear away the body’s muscle, immune defences and regulatory systems, and eat away at the mind. Mum finally succumbed to heart failure, dying a few months before the pandemic.

 

The science and narrative around chronic fatigue is changing

CFS/ME has been a Cinderella condition, whose sufferers have been told to pick themselves up from ‘yuppie flu’, just as long COVID has often been dismissed as a media-driven myth. Medical advice to undertake ‘graded exercise’ is common, based on guidance that was recently withdrawn following patient advocacy campaigns and criticism of the original research. In fact, exertion can exacerbate disabling fatigue in people with ME/CFS – a symptom called ‘post-exertional neuroimmune exhaustion’ (PENE or post-exertional malaise) in the international consensus criteria. There is emerging evidence that fatigue and PENE also affect over 70% of people with long COVID.

Yet we continue to see the same attitudes today aimed at people who haven’t ‘bounced back’ from COVID. I see this as part of a culture that perceives illness as weak and chronic disease as a failure of willpower. It’s a culture that needs to change. Political, clinical and workplace leaders need to show leadership by taking viral illness and fatigue seriously. Workplace and government sickness policies should allow proper convalescence and the right to disconnect – rather than advising people with post-COVID fatigue to go back to work as soon as possible.

If we develop a treatment for long COVID that can be carried over, we can start treating people who’ve had ME/CFS for the last 20 years and have been left with a life-changing physical illness that they’ve struggled to have accepted as a disease in its own right.

David Strain, Senior Clinical Lecturer at the University of Exeter, UK, February 2021

 

What would a new normal mean for people with long COVID and CFS/ME?

Welfare policies should not treat long COVID or CFS/ME with disbelief, forcing people to fail humiliating tests and interrogations. Care policies should see both as a need requiring long-term support. Healthcare professionals need to be educated and guided by evidence-based management of fatigue, taking a biomedical approach and listening to patient advocates.

The epidemic of long COVID and post-COVID fatigue will remain a dark shadow once the acute pandemic has passed. But this moment in the spotlight is a potential turning point for understanding and respecting illness and chronic fatigue. Research needs to investigate the risks of exertion during viral infection as a possible route to prevention. We must not leave people with long COVID to suffer in the shadows for decades, long after the rest of society has returned to a new normal.

 

The opinions expressed in this blog are those of the author and do not necessarily represent the views of The Health Policy Partnership.
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