A new study reports on the many symptoms of long COVID, the condition that continues for weeks or months after a person survived a COVID-19 infection. Patients suffering from long COVID report 203 different symptoms and researchers are calling for changes to clinical guidelines to better assess the condition and support people living with it.
The research, published in Lancet’s EClinicalMedicine, is based on a web survey shared across the Body Politic online COVID-19 support group. The team received responses from 3,762 eligible participants from 56 countries. They identified 203 symptoms affecting 10 organ systems. The changes and effects of 66 of these symptoms were tracked for seven months.
The most common symptom was fatigue, worsening of other symptoms after physical or mental efforts (AKA post-exertion malaise), and brain fog, a nickname for various cognitive dysfunction. But the symptoms were very diverse. Sexual dysfunction, visual hallucinations, tremors, itchy skin, changes to one’s menstrual cycle, heart palpitations, bladder control issues, shingles, memory loss, blurred vision, diarrhea, and tinnitus.
“This is the most comprehensive characterisation of long COVID symptoms, so far,” lead author Dr Athena Akrami, a neuroscientist at the Sainsbury Wellcome Centre at UCL, said in a statement. “For the first time this study shines a light on the vast spectrum of symptoms, particularly neurological, prevalent and persistent in patients with long COVID. Memory and cognitive dysfunction, experienced by over 85% of respondents, were the most pervasive and persisting neurologic symptoms, equally common across all ages, and with substantial impact on work.”
The scientists found that the probability of symptoms lasting over eight months was 91.8 percent. On average, the patients that provided information on their symptoms over at least six months experienced about 56 symptoms out of the 203 recorded in the whole cohort.
Almost 9 in 10 participants experienced relapse, with physical and mental activity, as well as stress, being the main triggers. The researchers call for more to be done to support people suffering from the conditions, as governments are not doing enough. This is not a new development. People suffering from chronic conditions are too often ignored and dismissed, especially women of color, something that became even more pronounced during the pandemic.
“Along with the well-documented respiratory and cardiovascular symptoms, there is now a clear need to widen medical guidelines to assess a far wider range of symptoms when diagnosing long COVID,” Dr Akrami explained. “Furthermore, there are likely to be tens of thousands of long COVID patients suffering in silence, unsure that their symptoms are connected to COVID-19. Building on the network of long COVID clinics, which take GP referrals, we now believe a national programme could be rolled out into communities able to screen, diagnose and treat all those suspected of have long COVID symptoms.”
The study has some limitations. It potentially had a recall bias as the study was retrospective in nature. It also had a sampling bias as the survey was distributed in online support groups for people suffering from long COVID. The team also report that despite efforts in outreach and eight translations of the survey, the demographic was skewed towards English-speaking and white participants.