How information could support the fight against post-COVID syndrome 

In the early days of the pandemic, much of the effort of the health and care services was focused on people with severe symptoms of Covid-19, many of whom required hospitalisation. Initial data indicated that approximately 80% of cases were deemed to be mild, with people expected to make a full recovery, as they would from seasonal flu or a common cold. But over the past few months it’s become increasingly clear that not all ‘mild’ cases of Covid-19 resolve themselves easily as previously thought.  

According to recent data, up to one in 10 people under 50 can suffer with symptoms for longer than a month, with patients reporting a vast and wide-ranging array of ongoing symptoms. For others who make a recovery relapses are common, with an increase in reported fatigue and breathlessness on a long-term basis. Many of those who became unwell early in the first wave are still feeling the effects of the disease now, and it’s something scientists are still trying to understand. 

While patients have informally named the condition ‘long covid’ and set up social media support groups, new guidelines developed by NICE, the Scottish Intercollegiate Guidelines Network (SIGN) and the Royal College of General Practitioners (RCGP) define the condition as post-COVID syndrome. This will become a recorded diagnosis when a person has the signs and symptoms that develop during or following an infection consistent with COVID-19 for more than 12 weeks and they are not explained by an alternative diagnosis. The condition usually presents with clusters of symptoms, often overlapping, which may change over time and can affect any system within the body. Many people with post-COVID syndrome can also experience generalised pain, fatigue, persisting high temperature and psychiatric problems. In the most severe cases patients are being seriously debilitated by their symptoms, and are unable to live their day to day lives without assistance. Specialist services are being set up to support people with the condition, but with information about the disease still evolving, there is not always a clear referral pathway for the patients who continue to have symptoms but test negative for post-covid complications, such as organ damage.  

After publishing guidance on COVID terminology earlier this year, the PRSB is now in discussions with NICE, the colleges and NHS Digital about terminology and guidance around post-COVID syndrome so that the data can be recorded and shared between relevant professionals. In the short-term this can help to ensure that patients access the right care where applicable, for example, if neurological damage has occurred. Standardisation of this data may also help to support research into the condition, helping people to get swifter referrals when better information exists, and additional treatment options become available. Information about post-COVID syndrome will also be relevant to professionals providing rehabilitation services, such as physiotherapists and occupational therapists, who can work more effectively with access to a full picture of a person’s health. Ultimately the more standardised information we can record, the more effectively it can be used in both frontline care and research. In a situation where the medical professions are playing ‘catch up’ with. a new virus, the information will become vital to both support patients who are unwell now and those who may contract the virus in future.