Gez Medinger & Professor Danny Altmann THE LONG COVID HANDBOOK Contents Introduction Chapter 1: What Is Long Covid? Chapter 2: Who Gets Long Covid and Why? Chapter 3: Can Children Get Long Covid? Chapter 4: What Causes Long Covid? Chapter 5: The Pathology of Long Covid Chapter 6: Gender Bias and How to Tackle It Chapter 7: The Impact of Long Covid on Mental Health Chapter 8: How to Help Others Help You Chapter 9: Tips for Managing Symptoms Chapter 10: What about Treatment? Chapter 11: What Does Recovery Look Like? Chapter 12: The Emotional Journey Chapter 13: What’s Next? Conclusion Acknowledgements Notes Resources References Index About the Authors Gez Medinger is an investigative science journalist and patient advocate for Long Covid. He was a film-maker and marathon runner when he became ill with Covid in the early days of the pandemic. When he didn’t recover, Gez put his efforts into researching the novel condition of Long Covid, interviewing some of the world’s leading clinicians and turning his YouTube channel into a huge resource for patients, conducting over a dozen patient-led studies – which have been quoted in the global press, including the New York Times, New Scientist and Men’s Health. In the process he has built a worldwide community and his films currently have over 5 million views. Professor Danny Altmann is a Professor of Immunology at Imperial College London. His key research interests are the immunology of infectious disease including severe bacterial infections, Zika virus, chikungunya virus and SARS-CoV-2. He has also worked on autoimmune diseases including multiple sclerosis and rheumatoid arthritis. During the Covid-19 pandemic he has acted in several advisory roles, including on the House of Commons and House of Lords Science Committees and the Immunology Task Force to the Scientific Advisory Group for Emergencies (SAGE). He spent some years working as the lead on strategy in Infection, Immunity and Population Health at the Wellcome Trust, and has served more than twenty years as editor on medical journals, including Immunology. Introduction In early March 2020, I was in the hills above Los Angeles – getting a suntan, trying to get my second feature film off the ground and training for my fourth marathon. The weather was delightful, my legs were strong, and I was confident of hitting my two hours fifty minutes target in the London Marathon the following month. The only problem was that somewhere in central China a pangolin had partied too hard with a bat, and now a pandemic was brewing.fn1 The world – and my life – was about to change immeasurably. I flew back to London on 6 March, and less than a week later had my first symptom – a peculiar nausea. The following day, chills and stomach upset. All the colleagues I’d shared a meeting room with a few days prior were ill too. There were no tests, so no one could be sure, but Covid was exploding across London. My initial illness wasn’t too severe. I was able to work a few hours a day and felt foolishly and quietly smug that my immune system was obviously better than my colleagues’, who were feverish, coughing and having a general shocker. The London Marathon now looked like it was going to be cancelled, but I was so keen not to lose my hard-won fitness that in the second week of the illness I tried going for short jogs. By this point my colleagues were recovering. I was confident that in a few days I’d be right as rain too. After all, the government was saying that if you didn’t end up in hospital, then your isolation could end after a week, by which point you’d be fit to go back to work. Only I didn’t get better. I kept running – going slowly, telling myself that it was only a matter of time – but the weeks went past and still I felt awful. And then, five weeks in, I felt it: a very specific ‘grizzly’ feeling in my throat and chest that I’d not experienced for twenty-two years. That feeling was the signature symptom of post-viral fatigue syndrome (PVFS), which I experienced for a year after being ill with glandular fever. Oh God no, I thought, I can’t be doing that for another whole year. Not now. So, I decided to make a film for my nascent YouTube channel to examine the potential links between the novel coronavirus and PVFS. Could it be possible that swathes of people would be struck down with a complex, poorly understood and often completely debilitating condition, even after a mild initial Covid infection? I wasn’t sure if anyone would find their way to the film (especially given my paltry subscriber base at the time), but it gained an audience in the tens of thousands immediately – people all around the world, who were crying out for someone to recognise what was happening to them. I thought I’d make only one film on the subject. But then I made another. And why not one more? It’ll be a trilogy, I thought. And now here I am, more than two years and eighty films later. Still not back to where I was at in Los Angeles, running 20km at race pace every day, but able to live a busy life without relapsing every week as I did in the beginning. The vast improvement in my quality of life has been due in large part to making myself Guinea Pig No. 1, incorporating every piece of expert advice and research accumulated on my journey into my own life to aid my recovery. Having made a lot of progress, my goal now is to share the lessons that I, and other recovered long haulers, have learnt – often the hard way. I couldn’t be more pleased to be collaborating on this project with Professor Danny Altmann, one of the UK’s most respected immunologists and an expert on post-viral conditions to boot. Since early in the pandemic, he has been prepared to put his head above the parapet and speak on behalf of patients struggling to get recognition from the medical establishment. Danny is also running a large research project at Imperial College London that is investigating the role of immune system abnormalities and autoimmunity (which describes when our immune system attacks our own cells) in Long Covid, and so is at the very forefront of biomedical understanding of the illness. Between us, we hope to present a spectrum of the knowledge that exists at the time of writing – from the anecdotal experiences that I have observed in the Long Covid community through to my own patient-led studies and the hard science that’s accumulating as more research, trials and publications reach the light of day. Perhaps you’re a Long Covid sufferer yourself, or a family member or partner of someone who is. Or perhaps you’re a clinician seeing patients and looking for a resource that brings everything we know about Long Covid together. This is that resource. Danny and I have tried to make the knowledge, lessons and science herein as accessible as possible, because if anyone knows how difficult it is to absorb information with brain fog, it’s someone with Long Covid. We will break down the key topics into short chapters. Rather than present you with a solid wall of text, I will be your narrator, while Danny will break down the knotty and established science relevant to each topic in separate ‘boxout’ sections, like that below. At the end of most chapters, there is a quick Q&A with Danny and other key contributors, picking up some of the outstanding questions. Like Gez, my introduction to the world of Covid also came in March 2020, when my research team opted to pivot from our ‘day jobs’ investigating infection and immunity to efforts at decoding immunity to severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), the virus that causes Covid. More than two years in, we have all become so expert in the topic that it’s hard to think back to that time of a virtually blank canvas. Although I’ve spent my life researching the molecular immunology of pathways (i.e. how the body’s immune system responds to infection) in a wide variety of bacterial, viral, fungal and autoimmune diseases, here was a new disease about which we knew nothing. Since that period, we’ve worked on Covid immunity pretty much seven days a week, publishing our findings in journals such as The Lancet, Science and Nature. Within a few months, one of my oldest friends who’d been infected early in that first wave gave me a detailed and accurate description of what was to become known as Long Covid. Previously an extremely busy, active person, she felt she’d had the wind knocked out of her, could barely walk around the block and felt constantly fatigued. This was vaguely familiar and alarming. One of the flagship ‘day-job’ projects we’d had to suspend was a collaboration across clinical sites in Brazil, which aimed to establish why so many patients infected with the mosquito-borne chikungunya virus go on to develop a chronic, disabling illness that can drag on for years. One of our next papers, published in the British Medical Journal, was a kind of manifesto for the route forward to understand Long Covid. I’d always been quite motivated about the need to communicate about research with the public, press and policymakers. This communication began to seem really critical in a time of uncertainty and panic. No one wants to come across as a smart alec or mansplainer, but here was a situation in which you couldn’t turn on the TV or radio without a politician expounding on ‘antibodies’ or ‘herd immunity’, topics that I’d lived and breathed from the first day of my PhD studies at the age of twenty-one. My diary began to fill up with daily sessions with journalists, TV crews, politicians and patient groups. During one of these sessions, I met Gez making one of his films. We’ve kept in close touch ever since, often exchanging news of the latest research findings. The Long Covid story is remarkable in the sense that the medical agenda has been driven entirely by patients themselves and their communication across social media platforms. I’ve met terrific, medically articulate people through those groups and acquired from them a crash course in living with this disease that now informs all our research. With that in mind, my aspiration here is to do right by people with Long Covid in trying to offer an honest and accessible distillate of all I’ve learnt and anything that could be helpful. The price I pay for this is that, while Gez’s narrative will often come across as dramatic and exciting, I’m cast in the role of ‘Professor Boring’, as the voice of the medical establishment. It’s a role I’m content to take if it offers useful illumination. It will be self-evident from this book that Long Covid research is in its embryonic stage, sitting at an interface between the patient advocates and the medical research professionals. In that context it’s hopefully useful that this book has two distinct voices from those different perspectives. The two views can inevitably become polarised at times. Gez has his role in drawing together the lived experience of the sufferers including their search for therapeutic answers. It is this clamour for answers that will in time wend its way into formal research studies. My career has drummed into me the paramount need to ignore anecdotes in favour of a laser-focus on the statistically-powered, controlled trial. That is, when hearing about ‘evidence’ in Long Covid, I set the bar in exactly the same place as if I were asked to peer review it for Nature or The Lancet. This means that sometimes Gez and I will not agree. I don’t endorse every statement he makes, and vice versa. Long Covid has yet to achieve consensus so we see this breadth as a plus. It also means that my formality may sometimes annoy you – you may find that the hypothesis or treatment that seems