British Medical Association news: Long COVID – we’ve been here before
by Jennifer Trueland, 12 February 2021
Long COVID is a new condition, but those who have endured years of ME/CFS can share their common experience – and a long history of being misunderstood
When it was becoming clear that COVID-19 was a serious issue early last year, Nina Muirhead (pictured) had a strong suspicion about what would happen next.
As a doctor who had developed ME/CFS following an attack of glandular fever four years ago, and in common with others in the scientific and ME patient community, she predicted that there would be a sub-set of people who, like her, would still be suffering months or even years after contracting the virus.
‘I wrote to Professor Whitty [England’s chief medical officer] and Sir Patrick Vallance [chief scientific officer] back in March saying there’s going to be a long COVID, and maybe there should be a health warning put out about this – maybe people should be advised of the long-term consequences, maybe we could do a study.
‘But they were so overwhelmed with fighting the big fire [acute COVID], and because ME is so misunderstood by the medical profession, they didn’t have the same end of the binoculars as I do. They didn’t see it coming in the same way.’
Nearly a year on, it’s becoming accepted that long COVID is a serious problem. The Office for National Statistics said in December that an estimated one in five people testing positive for COVID-19 exhibit symptoms for five weeks or longer, with one in 10 exhibiting symptoms for 12 weeks or longer…
Amy Small, a GP in Lothian who has campaigned on long COVID after becoming ill herself, acknowledges that she has learned a lot about management of the condition from the experience of people with ME/CFS.
‘One of the first things I did when I realised that I wasn’t getting better was that I phoned a friend who has had severe ME for several years.
‘I asked her what would you want to know if you were me now, and you could see this coming – what would you do? She suggested pacing first and foremost – learn to pace properly. I had never really understood what pacing was – I thought it was to do what you’re doing, but do it more slowly.
‘But someone on Twitter recommended a book to me called Classic Pacing for a Better Life with ME and that was a real turning point for me.’
h long COVID had found giving up sugar very helpful, and she’s got me on a load of supplements. I said to my husband years ago that if he ever caught me taking turmeric for medicinal purposes, then shoot me,’ she laughs. ‘Boy did I live to regret that. I think my attitude has changed.’
Keeping a symptom diary and consulting a nutritionist have also been helpful – although Dr Small admits that some of the advice would previously have been anathema to her as an evidence-focused medic.
Read more from Dr Nina Muirhead, Dr Charles Shepherd and Dr David Strain, an ME/CFS researcher, now leading the BMA’s COVID response.