More than 200 symptoms of long COVID have been identified across 10 organ systems, prompting calls for a UK screening programme.
UCL scientists led the international study, the largest yet into people with long COVID, with a patient-led research collaborative who connected through the Body Politic online COVID-19 support group.
Out of the responses from 3,762 eligible participants in 56 countries, the researchers identified 203 symptoms in 10 organ systems and of these, 66 symptoms were tracked for seven months.
Writing in EClinicalMedicine, they say the most common symptoms recorded were fatigue, post-exertional malaise and cognitive dysfunction while other symptoms included: visual hallucinations, tremors, itchy skin, changes to the menstrual cycle, sexual dysfunction, heart palpitations, bladder control issues, shingles, memory loss, blurred vision, diarrhoea, and tinnitus.
The research team, who have all had or continue to have long COVID, are now calling for the widening of clinical guidelines on assessing long COVID beyond cardiovascular and respiratory function tests to include neuropsychiatric, neurological, and activity intolerance symptoms.
They also suggest that because there are significant numbers with the condition “suffering in silence”, there should be a national screening programme for anyone who thinks they have long COVID.
Senior author Dr Athena Akrami, a neuroscientist at the Sainsbury Wellcome Centre at UCL, said: “While there has been a lot of public discussion around long COVID, there are few systematic studies investigating this population; hence relatively little is known about its range of symptoms, and their progression over time, the severity, and expected clinical course (longevity), its impact on daily functioning, and expected return to baseline health.
“In this unique approach, we have gone directly to ‘long haulers’ around the world in order to establish a foundation of evidence for medical investigation, improvement of care, and advocacy for the long COVID population. This is the most comprehensive characterisation of long COVID symptoms, so far.”
The 257-question survey was open to anyone over the age of 18 who had experienced symptoms consistent with COVID-19, including those with and without a positive SARS-CoV-2 test.
Analysis of survey data was limited to respondents with illnesses that lasted longer than 28 days and whose onset of symptoms occurred between December 2019 and May 2020.
Vast spectrum
They found the probability of symptoms lasting beyond 35 weeks was 91.8%.
Out of all the respondents, 3,608 (96%) reported symptoms beyond 90 days, while 2,454 experienced symptoms for at least 180 days and 233 had recovered.
People who had recovered in less than 90 days had an average of 11.4 symptoms, which peaked at week two. For those who did not recover in 90 days, the average number of symptoms was 17.2 and they peaked at month two.
Respondents with symptoms over six months experienced an average of 13.8 symptoms in month seven. During their illness, participants experienced an average of 55.9 symptoms across an average of 9.1 organ systems.
Relapses were experienced by 89.1% of participants, with exercise, physical or mental activity, and stress as the main triggers, 45.2% reported needed a reduced work schedule and 22.3% were not working at all at the time of the survey.
Dr Akrami said: “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.
“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.
“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.
Serious complications chronicled
“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.”
* A second study, published in The Lancet today, finds that half of patients who received hospital treatment for COVID-19 have developed long-term complications.
Complications were common even in previously healthy young adults, the study of 70,000 British patients found.
Some 24% suffered renal complications and 12% cardiovascular problems, according to the research commissioned by the National Institute for Health Research.
Researcher Dr Thomas Drake, from the University of Edinburgh, said:
“Our research looked at a wide range of complications and found that short-term damage to several organs is extremely common in those treated in hospital for COVID-19. These complications were common in all age groups, not just in older people or those with pre-existing health conditions. People who have complications will often need expert care and extra help to recover from their initial hospital admission.
“We are still studying the participants in our study to understand the long-term effects of COVID-19 on their health. The results from these ongoing studies will be particularly useful, as we found many people who survive COVID-19 and develop complications are from economically active age groups.”
Davis HE, Assaf GS, McCorkell L et al. Characterizing Long COVID in an International Cohort: 7 Months of Symptoms and Their Impact. EClinicalMedicine 16 July 2021
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