An analysis of interviews with people suffering from long-COVID, published in the British Journal of General Practice, outlines the wide range and persistent nature of symptoms people are experiencing and the demands this makes on their GPs, as well as the need for ongoing support.
People suffering from so-called “long-COVID” have told how they were left almost bed-ridden with fatigue months after their coronavirus infection. The Standard reports that researchers at Keele University have studied people with persistent and long-lasting symptoms following a COVID-19 infection.
The report says that none of those who took part in the interviews had been admitted to hospital during their initial suspected or confirmed coronavirus infection. Half of the participants in the study had not been tested for COVID-19, and of those that were, only one had a positive result.
The wife of one 67-year-old man, who had coronavirus in March, told the study team that her husband was sleeping “20 hours-a-day” at one point in his recovery.
She said: “He’s still sleeping now, five-and-a-half months after, he sleeps an awful lot. Sat up, not lay down, sat up he’s just totally exhausted.” She said: “He’s still sleeping now, five-and-a-half months after, he sleeps an awful lot. Sat up, not lay down, sat up he’s just totally exhausted.”
Another 50-year-old woman, also believed to have had the disease in March, said she initially thought she had recovered after about 15 days, until the fatigue hit. She said: “It was just like I’d been run over. You know I felt, gravity felt like it was applying extra on my limbs. “And I couldn’t seem to manage to do anything, I stopped walking completely.” She said on some days she had been left “bed ridden” by fatigue.
Meanwhile, a 34-year-old woman told researchers that even simple tasks like peeling vegetables required a break. She said: “I have to do a chore, sit down for 15, 20 minutes and then do the next, which frustrates me, it’s like peeling potatoes, I can’t peel the carrots straight afterwards.”
Other participants spoke about not feeling entitled to health care, and the difficulty in finding a GP who believed their symptoms were real. They also raised concerns about never recovering from the disease.
The paper featured analysis of 24 interviews.
Researchers said the availability of tests were limited at the time participants had acute infection. The study found that further research was needed to “better understand recovery trajectories” and to inform and improve the care of patients.
Background: An unknown proportion of people who had an apparently mild COVID-19 infection continue to suffer with persistent symptoms, including chest pain, shortness of breath, muscle and joint pains, headaches, cognitive impairment (‘brain fog’), and fatigue. Post-acute COVID-19 (‘long-COVID’) seems to be a multisystem disease, sometimes occurring after a mild acute illness; people struggling with these persistent symptoms refer to themselves as ‘long haulers’.
Aim: To explore experiences of people with persisting symptoms following COVID-19 infection, and their views on primary care support received.
Design & setting: Qualitative methodology, with semi-structured interviews to explore perspectives of people with persisting symptoms following suspected or confirmed COVID-19 infection. Participants were recruited via social media between July–August 2020.
Method: Interviews were conducted by telephone or video call, digitally recorded, and transcribed with consent. Thematic analysis was conducted applying constant comparison techniques. People with experience of persisting symptoms contributed to study design and data analysis.
Results: This article reports analysis of 24 interviews. The main themes include: the ‘hard and heavy work’ of enduring and managing symptoms and accessing care; living with uncertainty, helplessness and fear, particularly over whether recovery is possible; the importance of finding the ‘right’ GP (understanding, empathy, and support needed); and recovery and rehabilitation: what would help?
Conclusion: This study will raise awareness among primary care professionals, and commissioners, of long-COVID and the range of symptoms people are experiencing. Patients require their GP to believe their symptoms and to demonstrate empathy and understanding. Ongoing support by primary care professionals during recovery and rehabilitation is crucial.
Tom Kingstone, Anna K Taylor, Catherine A O’Donnell, Helen Atherton, David N Blane and Carolyn A Chew-Graham
Full report in The Standard
BJGP Open abstract