When Claire Hastie, a single mother to 3 boys, woke on Mother’s Day in March 2020 finding it hard to breathe, she knew something was wrong.
The 47-year-old British copywriter had been suffering from an inflamed throat for a few days, but as her breathlessness worsened and she developed further symptoms, unlike any she had experienced before, she knew it must be COVID-19.
This was the beginning of an illness from which Claire is yet to recover.
From fit and active to being unable to move
Prior to this time, Claire had been cycling 13 miles a day as part of her commute to work and enjoyed a busy family, work and social life. But following her COVID-19 infection, Claire went on to develop longer-term effects that we now recognize as post-COVID-19 condition or long COVID.
For 3 months, she was bedridden, too unwell to hold a conversation, read, watch television or even listen to music because of the fatigue, sensory overload and inability to process information. She suffered chest pain, heart palpitations and felt chilled to the core. In all, she counted more than 40 symptoms that evolved over several months.
More than once she awoke from her night’s sleep experiencing what she thought might be a stroke, with numbness, pins and needles, and an inability to move.
The whole family affected
Claire’s sons also contracted COVID-19. Her eldest, Thomas, then 15, developed alarmingly discoloured and swollen “COVID toes” that lasted for months, even though he felt fine – which was fortunate, as he had to care for his mum and his 11-year-old twin brothers, James and William.
James had excruciating joint and abdominal pain, with sickness and diarrhoea that continue to recur every month or so, causing him to miss out on school. William had daily nose bleeds, as well as chest pain and fatigue that continue to affect his ability to attend school. A year after contracting COVID-19, he also developed frequent seizure-like episodes involving visual disturbances, pressure in his head and loss of consciousness.
“It is heartbreaking to see your children suffer. Several of my friends have children who have also been affected for more than 2 years. No one knows how to help us. Thank goodness my eldest son has been able to look after us – cooking, cleaning and doing the laundry.”
Getting support from others with the condition
Seven weeks into her illness, Claire set up a Facebook support group for people who, like her, had not recovered in the timeframe indicated by guidelines at that time.
Moderated closely by an international administration team, the group has grown to more than 50 000 people in 100 countries. Members describe the group as a lifeline, and value the social and well-being activities, including the Long Covid Choir, chair yoga, opera breathing and Zoom chats. As a wider organization, Long Covid Support works with policy-makers, researchers and other bodies to help the large numbers of people with the condition.
More than 2 years after becoming ill with COVID-19, Claire has adjusted her life to the new normal. Having been unable to work for more than a year, she is now working reduced hours from home. Fortunately, her employer has been understanding of her condition, enabling her to adapt her role to work around the restrictions it has placed on her life.
A condition that is still poorly understood
So far, more than 200 symptoms have been associated with long COVID, which has made it difficult for the medical profession to diagnose and treat it. This is complicated by the fact that the condition often has a relapsing and remitting pattern.
The exact number of people affected by long COVID is not clear, although studies show that around 10–20% of individuals who caught COVID-19 may experience continued symptoms for weeks to months after their original infection.
Age and severity of original symptoms seem to be irrelevant to the chances of developing long COVID. This means that there are currently millions of people in the WHO European Region struggling with a condition that affects their ability to function, to work and to have a decent quality of life.
Increasing recognition and care for people with long COVID
The scale of long COVID – a long-term condition that will put significant burdens on health systems worldwide for years to come – is only starting to be realized.
WHO/Europe is in the process of partnering with Long COVID Europe, a network of patient-led associations that has been gathering information on the condition and sharing it with interested stakeholders since its foundation last year.
WHO/Europe has also been working with patient groups to define priority areas where action is needed. It is now calling upon governments and authorities to focus attention on long COVID and its sufferers through greater:
- recognition: all services must be adequately equipped, and no patient should be left alone or have to struggle to navigate through a system that is not prepared to, or not capable of, recognizing this very debilitating condition;
- research and reporting: data gathering and reporting of cases, and well-coordinated research with full participation of patients, are needed to advance understanding of the prevalence, causes and costs of long COVID; and
- rehabilitation: this cost-effective intervention is an investment in building back healthy and productive societies.