ME and long Covid
"The term 'long Covid' is commonly used to describe signs and symptoms that continue or develop after acute Covid‑19. It includes both ongoing symptomatic Covid‑19 (from 4 to 12 weeks) and post‑Covid‑19 syndrome (12 weeks or more)."
This description is taken from the National Institute for Health and Care Excellence (NICE) rapid guideline for Covid-19: managing the long-term effects of Covid-19, first published in December 2020 and most recently updated in January 2024.
There are some striking similarities between the symptoms of long Covid and the symptoms of ME/ CFS. So far, there is no evidence to suggest that they are the same thing. We must be careful about drawing assumptions that drive care and treatment. What we are seeing with long Covid is that some people recover relatively quickly, some appear to have a delayed recovery and others seem to have no recovery or get worse.
From many, many years of experience, the ME community knows what helps with managing post-exertional malaise – pacing and rest and NOT recommending that people push through it.
There is a real opportunity for research which could help both people with Long Covid and those with post-viral conditions like ME. We have the potential opportunity to understand what’s delaying or preventing recovery and what is restoring health. Our job is to ensure that this opportunity is not lost, that the neglect of people with ME stops and that we finally see the investment in research, treatments and care that every single adult and child with ME and their families deserve.
Please also see
- the World ME Alliance (Action for ME is a founding member) on comorbidities with ME, including long Covid
- a review of current literature (published in 2023 in Nature) highlighting key findings, the overlap with other conditions, the variable onset of symptoms, long COVID in children and the impact of vaccinations
- UK parliamentary questions on research funding for ME/CFS and long Covid raised in October 2024.
