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NICE rapid response guideline on Long Covid

December 18, 2020

NICE has published its COVID-19 rapid guideline: managing the long-term effects of COVID-19.

Developed jointly by NICE, the Scottish Intercollegiate Guidelines Network and the Royal College of General Practitioners, it “makes recommendations about care in all healthcare settings for adults, children and young people who have new or ongoing symptoms 4 weeks or more after the start of acute COVID-19. It also includes advice on organising services for long COVID.”

Along with other stakeholders, Action for M.E. submitted a written response to the consultation on this guideline, which ran from Friday 23 to Tuesday 27 October. You can read more on our Long Covid page.

We are concerned to see no mention of the likelihood of developing M.E./CFS following Long Covid, despite the fact that there is clear evidence that many people with M.E./CFS developed it following viral infection.

Those who experience M.E./CFS symptoms need specific care and management, such as pacing. If those experiencing post-exertional malaise, a hallmark symptom of M.E./CFS, are treated following this guideline, they may experience a worsening of symptoms.

As this guideline claims to be a living document, we would expect there to be a further consultation and review in due course. Action for M.E. is working with another organisation to ensure patient voices are heard, and will share more about our work on this in the New Year.