People with long Covid feel “forgotten, unheard, disbelieved, isolated”, barrister Anthony Metzer KC told the Covid-19 Inquiry last month on behalf of advocacy groups for people with the condition.
A growing number of people who have secondary illnesses thought to be triggered by long Covid – including an immune disorder called mast cell activation syndrome (MCAS) – say this feeling is especially acute.
I spoke to two young Londoners who, like me, have been diagnosed with long Covid and now MCAS and are starting to feel better, but faced poor treatment by doctors.
In George Cooper’s case, he says one was “so unreceptive to the point where they were actually angry”, and for Elle Gorman, they questioned whether she was “not eating on purpose”.
The National Institute for Health and Care Excellence defines long Covid, or post-Covid syndrome, as symptoms during or after infection that continue for more than 12 weeks and are not explained by an alternative diagnosis.
The BMJ says MCAS “is characterised by recurrent sudden-onset episodes of severe systemic symptoms associated with the release of mast cell mediators“, which can include histamine.
George, 27, from Putney in south-west London, was recovering from glandular fever when he became “really ill” in March 2020 with suspected Covid.
Although there was no testing at all during this time, antibody tests in June of 2020 showed he had been exposed to the virus and, after experiencing months of lingering symptoms, he was diagnosed with long Covid.