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A definition of the phenomenon commonly known as long Covid has been published today as part of the development of the first UK guideline for health professionals on managing the newly emerging condition.
The National Institute for Health and Care Excellence (NICE), the Scottish Intercollegiate Guidelines Network (SIGN) and the Royal College of General Practitioners, have been tasked by NHS England and the Scottish Government with creating guidance to help clinicians respond to people with enduring Covid-19 symptoms in a consistent and evidence-based way.
They said for the purpose of the rapid guideline, which is due to be published by the end of the year and will be shared internationally, they would using the term “post-Covid-19 syndrome” in place of long Covid.
Post-Covid-19 syndrome would be defined as “signs and symptoms that develop during or following an infection consistent with Covid-19, continue for more than 12 weeks and are not explained by an alternative diagnosis”, according to a guideline scope document released today.
It said post-Covid-19 syndrome “usually presents with clusters of symptoms, often overlapping, which can fluctuate and change over time and can affect any system in the body”.
“This includes but is not limited to the cardiovascular, respiratory, gastrointestinal, neurological, musculoskeletal, metabolic, renal, dermatological, otolaryngological, haematological and autonomic systems, in addition to psychiatric problems, generalised pain, fatigue and persisting fever,” it added.
The findings echo some of the lived experiences of people with ongoing Covid-19 that were laid out earlier this month in a report published as part of the ongoing Living with Covid themed review.
The review, by nurse academic Dr Elaine Maxwell, content lead for the National Institute for Health Research’s Centre for Engagement and Dissemination, highlighted the benefits of developing a “working diagnosis” of long Covid as well as a code for clinical datasets.
However, Dr Maxwell said it was important not to “narrow down the definition too early and potentially exclude many people who are suffering”.
The 12-week period used for the purpose of the guideline had been “developed by consensus and aligns with other related guidance on appropriate follow-up and discharge”, stated the scope report.
Diagnosis of previous Covid-19 infection when considering a case of long Covid could be made retrospectively based on symptoms alone in the absence of a positive test, it added.
Post-Covid-19 syndrome was listed as the final of three Covid-19 stages.
The others were “acute Covid-19 infection” (signs and symptoms of Covid-19 for up to four weeks), and “ongoing symptomatic Covid-19” (signs and symptoms of Covid-19 from four weeks up to 12 weeks).
As much uncertainty still remains about the long-term effects of Covid-19, the definition and upcoming guideline will be subject to continous review and will be updated if required.
Safia Qureshi, director of evidence for Healthcare Improvement Scotland, of which SIGN is a part, said the scope report was a “first and vital stage” in the production of a guideline.
She added: “We understand that long Covid is creating great distress and uncertainty for those affected, and that the NHS requires the best available advice to support people effectively, even as we continue to seek to understand it.”
Paul Chrisp, director of the centre for guidelines at NICE, said post-Covid-19 syndrome was being seen in a “sizeable minority” of people who contract Covid-19.
“This is a new condition and there is still a lot we don’t know about it,” he added.
“Our aim is that the post-Covid syndrome guideline will begin by setting best practice standards of care based on the current evidence but, as our understanding of the condition grows, be adaptable and responsive to new evidence as it emerges.”