[Please note that this article discusses matters that may be upsetting for some readers.]
My name is Sam. I am 50. I am doubly disabled with autism and long Covid. And I also have Postural Tachychardia Syndrome (POTS). In 2019, I was fit and healthy. Now, in December 2023, I am completely broken. I cannot work. I cannot drive. I cannot drink alcohol. I am too ill to walk my dogs. I am too ill to have sex!
Struggling with long Covid
I want to say something critically important at the outset. Long Covid isn’t a static condition. Many people recover. Many people get worse. A few weeks ago, I met a man called Alan. He got long Covid in March 2020. This March he had a mini-stroke, and lost the sight in one eye overnight.
I have had long Covid for three and a half years. I make little videos about my lived experience with the illness. It has an incredibly severe and debilitating symptom: brain inflammation. It is made worse by fatigue.
Recently, I went into Exeter on my own for the first time in a few years. By the time I got home, I was more ill than I usually am. Since returning from Exeter, I’ve been increasingly unwell, making my brain inflammation worse. I think I got dangerously dehydrated too. My body doesn’t tell me when it’s thirsty. I can only ever get anything done on adrenaline which means I probably shouldn’t do anything. And, it’s unsustainable.
Currently, I am struggling. Cooking dinner is a mammoth effort, as is tidying the house. At times, I have given serious thought to killing myself. I am in so much pain of all kinds. I told my wife about things while she was driving us home. I don’t know if she has really processed it. I feel utterly wiped and grateful to be still in one piece at the end of the day. I am not a doctor, but I think it’s an adult version of Paediatric Acute-onset Neuropsychiatric Syndrome (PANS).
They think it’s all over
Everyone is so keen to move on from Covid that they are happy to swallow the lie that Covid is over. I and others like me in the long Covid community know differently. Approximately two million people are disabled with long Covid . We all have had no option but to advocate for ourselves.
On 13 October, Ondine Sherwood of Long Covid SOS testified movingly about her experiences of Covid and long Covid on behalf of the Long Covid Groups. I had nowhere near enough energy to travel up to London to testify. No one from the media showed up to hear their devastating testimonies. We suffer mostly in silence. It is absolutely soul-destroying.
I run an account on X (formerly Twitter). As a long Covid advocate, my neurological symptoms mean that I am forgetting everything, so I am trying to use this to educate people about the severity of my condition. I have 38,000 followers on Twitter including a Hollywood actor and Michael Rosen. Despite the level of engagement that I have, I get no traction with the outside world.
No one seems interested
I assist two of the largest long Covid charities in the UK, Long Covid Support and Long Covid Kids. Some of the world’s leading scientists and doctors who talk about long Covid follow me: Dr Deepti Gurdasani, Dr Claire Taylor, Professor Stephen Griffin, Professor Sheena Cruickshank, and Dr David Joffe. In spite of all this, there’s no cut-through. I am invisible.
On the rare occasions where Covid is mentioned, it’s now talked about in the past tense. Few mention the fact that, even if the Covid variant is relatively mild, one in ten Covid cases turn into long Covid. The World Health Organization is very clear that the Covid pandemic is ongoing and Covid death figures sadly bear this out, but the United Kingdom Health Security Agency (UKHSA) does not permit the under-65s to get a Covid vaccine. Widespread Covid testing in the UK ended in April 2023 and 12 million fewer people than last year (the 50-65 age group) are not eligible for a Covid booster vaccine this autumn.
Despite knowing that Covid is an airborne virus, there is no public health messaging that advocates the use of good quality masks or the importance of clean air. This is despite the fact that many government buildings have been recently fitted with clean air equipment.
Apathy – and where it leads
I wish I could say the general public is less apathetic. I helped the Clinically Vulnerable Families group promote an excellent government petition on bringing back masks in healthcare. A petition that should have attracted 100,000 signatures got just over 10,000. The government response was derisory.
The current Covid strain achieving dominance is JN.1. JN.1 is a cause for concern due to the viral load of the strain. There is currently no public health information campaign warning about rising Covid hospitalisations or deaths. There are no government recommendations for the wearing of good-quality masks (FFP2 or FFP3) or the use of clean air. People were doing a load of socialising leading up to Christmas. What I fear is many more thousands of people will die of Covid, or become severely disabled like me. Information from the media is poor. James Gallagher, reporting for the BBC, quoted Professor Openshaw’s view that “with repeated infection we should build up natural immunity”.
This feels like an incredibly risky strategy. My body simply cannot take another Covid infection.