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 Medical advice to undertake ‘graded exercise’ is common, based on guidance that was recently withdrawn following patient advocacy campaigns and criticism of the original research.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.