I have had long Covid for three years. Even though I have made huge progress I still suffer most days with chronic pain in my joints, a rolling sense of vertigo, fatigue and brain fog. To look at me you might think I'm fine, but it is achingly painful that I can't physically manage the activities I used to enjoy…
BBC News, by Lucy Adams
Extracts
“Prof Carson compares those who suggest Long Covid is “all in the head” to people who believe the earth is flat.”
The truth is I have found ways to manage my symptoms but I'm afraid I don't have the answers. Three years on, I wanted to check if I had missed any big discovery, so I went back to some of the experts involved in the Panorama from July 2021.
Dr Elaine Maxwell, author of the first and second review of long Covid for the National Institute for Health Research (NIHR), tells me there is no single medical treatment or drug that can cure the condition quickly and effectively.
“There is no magic bullet,” she says. “But we are seeing research that shows the long Covid clinics in England are helping people live with their symptoms. We would like to find a cure but in the interim there are lots of long-term debilitating conditions that we know a lot about how to manage.”
Dr Maxwell says experts have not learnt much more about “causal mechanisms” of long Covid since the summer of 2020. “We still haven't got the evidence to say it is a single thing with a single cause nor a single treatment,” she says.
Immunologist Professor Danny Altmann, at Imperial College London, has been looking at the theory that for some people long Covid is an auto-immune condition, that the body is attacking itself. He has early indicators of blood biomarkers but no conclusions and no treatment.
“I would say bear with us,” he says. “We are honestly trying. Our research is going really well. We have got lots of clues, but we haven't got the answers. The consensus is not clear at all.” Dr Altmann reassures me: “You have not missed the big answer.”
Dr Maxwell says: “It is clear that people who have been vaccinated have a reduced incidence of long Covid and the number of people developing long Covid seems to be going down.
“The difficulty with that is that there is a group of you who got Covid very early on and still have symptoms and yet the attention and policy has moved away from it. There is a lot of speculation about what long Covid is, especially amongst patient advocacy groups, and the narrative has become polarised.”
Prof Alan Carson, of Edinburgh University, tells me he does not need to see biomarkers in the blood to know the symptoms people are experiencing are absolutely real, genuine and “appalling”. “As a doctor if you need a biomarker or a screening test to show abnormalities after two hours of listening to a patient about their symptoms, then you are clearly in the wrong job,” he says.
Prof Carson compares those who suggest long Covid is “all in the head” to people who believe the earth is flat. He was the first person who could explain in a way that I understood what was happening to me and how the communication systems between my brain and other organs in my body had gone awry…
Since I wrote that first piece for the BBC, I have been contacted by hundreds of people with long Covid and ME (Myalgic encephalomyelitis), another condition which has what Prof Carson refers to as “constellations” of symptoms.
Lucy Adams