UK guidelines for managing long-term effects of COVID-19

Robin Gorna and colleagues¹ state that people with lived experience should have been involved in developing the National Institute for Health and Care Excellence (NICE), the Scottish Intercollegiate Guidelines Network (SIGN), and the Royal College of General Practitioners (RCGP) guideline on managing the long-term effects of COVID-19. The expert advisory panel for developing the NICE–SIGN–RCGP guideline had 23 members who contributed substantial clinician and patient experience to discussions.² Two stakeholder consultations were held and the guideline was adapted in response to feedback from patient-led, health, and care organisations. This adaptation included the addition of a table of commonly reported symptoms.

The panel heard evidence from clinicians and patients who felt that symptoms were not taken seriously. A need for detailed assessment of all symptoms and their overall effect on a patient was emphasised. We stressed the need for timely referral and investigation and for the development of individualised treatment plans. We reject Gorna and colleagues'¹ suggestion that we overly focus on self-management.

The panel's rationale for the term post-COVID-19 syndrome is to reflect that the acute phase of the illness has ended, and that the ongoing illness includes a wide range of symptoms that might not have been evident during the initial infection. Patient feedback raised the concern that the term long COVID implied ongoing infectivity, for which there is no evidence. The panel did not consider that there was adequate existing evidence to propose underlying mechanisms for post-COVID-19 syndrome at this time.

Research recommendations were made relating to the urgent need for mechanistic studies and clinical research into best investigative and treatment approaches. The guideline will be continually updated as such evidence becomes available.

WS is chair of the Independent Advisory Expert panel of the NICE–SIGN–RCGP rapid guideline Managing the Long-term Effects of COVID-19, and is a general practitioner. MH and SO are expert panel members for the NICE–SIGN–RCGP guidelines. SO is also the lay representative for the NICE–SIGN–RCGP guidelines.