Providing information

People need good information after acute COVID-19 so they know what to expect and when to ask for more medical advice. This could help to relieve anxiety if people do not recover in the way they expect. Evidence from patient experience and the panel’s own experiences supported this, particularly because symptoms can fluctuate and there are so many different symptoms reported. Information may be provided by the person’s GP or community services, or by secondary care for people who were in hospital. 

For the November 2021 update, the panel heard expert testimony that absence from or poor performance at work or education was associated with poor outcomes for people with ongoing symptomatic COVID-19 or post-COVID-19 syndrome. The panel agreed that it is important for people to contact a health professional if they are struggling with returning to work or education after acute COVID-19 to ensure they receive support with any continuing symptoms.

The panel discussed whether there were any symptoms in particular that people should look out for that that may suggest they have ongoing symptomatic COVID-19 or post-COVID-19 syndrome. They agreed that there was no new evidence in this area and that the list of possible symptoms is too long to give people helpful advice on which symptoms to look out for. The panel agreed that people should contact a healthcare professional if they are concerned about any new, ongoing or worsening symptoms. The panel also noted that there is some helpful information on the Your COVID Recovery website that outlines when people should contact their healthcare professional.

Observational evidence (Antonelli et al, 2021; Arnold et al, 2021; Strain et al, 2021) and expert testimony on the safety and therapeutic benefit of COVID-19 vaccines in the context of long-term effects of COVID-19 were inconclusive for the outcomes of duration and change in symptoms, quality of life and mental wellbeing. The population included people with existing long-term effects of COVID-19 and people infected after vaccination who reported symptoms of 28 days or longer since vaccination.

The expert panel agreed that the findings could not justify a positive recommendation for COVID-19 vaccination to treat the long-term effects of COVID-19, nor a negative recommendation against this intervention in the absence of evidence of harm. 

However, the panel recognised the safety and effectiveness of vaccines in preventing acute infection and the importance of the national COVID-19 vaccination programme to protect all people, particularly those who are at highest risk from serious illness or death from COVID-19 or at risk of transmitting infection. Therefore, the panel emphasised the need to encourage patients with long-term effects of COVID-19 who have not been vaccinated to have the vaccination to reduce the risk of a further SARS CoV-2 infection, but to explain the uncertainty about the effect of vaccination on ongoing symptomatic COVID-19 and post-COVID-19 syndrome.

SIGN, RCGP and NICE's patient booklet on Long COVID provides accessible information for people who have had acute COVID-19 and have ongoing signs and symptoms.