Gez Medinger and Danny Altmann (Cornerstone Press)
鈥淭he reality is really, really hard. And rather than try to put a positive spin on it in this book, I want to call out that reality and let you, the reader, know that if you鈥檙e feeling this way, you鈥檙e not alone.鈥� Gez Medinger, one of the authors of The Long Covid Handbook, describes the anger, grief and frustration felt by those with long covid, a poorly understood condition in which people who have had covid-19 experience debilitating symptoms that persist for three to four months and beyond. Their frustration underlies a major tension, felt in the book, that exists between people鈥檚 need for an explanation and treatment for long covid 鈥� and other conditions with which it appears to overlap, such as myalgic encephalomyelitis or chronic fatigue syndrome 鈥� and science鈥檚 failure, so far, to deliver definitive answers.
Long covid shatters people鈥檚 lives. Symptoms such as fatigue, 鈥渂rain fog鈥�, heart palpitations, joint and muscle pain, fainting, dizziness and allergic reactions means some of those with the condition can鈥檛 work, or even get out of bed. Not knowing when or if they will recover adds to the burden on their mental health. The condition can strike young, healthy adults: Medinger used to run marathons before he got it.
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Initial scepticism from parts of the medical community about the existence and nature of long covid has now transformed into acceptance, and the BMJ has just published an on how to recognise and treat patients. But beyond sympathy and basic help with symptoms, there is little doctors can offer, although covid-19 vaccination can help. Now, Medinger and his co-author Danny Altmann, a professor of immunology at Imperial College London, have joined forces to explore what we know so far and bring it all together in one place.
This is no mean feat, especially if you have long covid, as Medinger still does. His voice is that of the first-hand expert 鈥� someone who has lived experience of the disease and who has been embedded in the long covid community for more than two years. He seeks to make sense of his condition, find ways to improve it and share his findings, both anecdotal anddata-driven, with fellow patients: he has a where he has made 80 videos on the subject. Altmann, meanwhile, is the voice of conventional biomedical science. His role is to explain the complexities of scientific findings and act as wingman and sceptic.
Medinger seeks to make sense of his condition, find ways to improve it and share his findings
Overall, this double act works well. There are chapters on the current thinking around what the mechanism is behind long covid, why some people get it and others don鈥檛, and how their symptoms arise. There is a welcome chapter dedicated to children with long covid, as well as helpful discussion of mental health and how to seek help. The book ends optimistically, describing upcoming research, including a major immunology study led by Altmann that seeks to tackle some of the questions raised in the book.
I am uneasy, however, at the extent to which Medinger relies on anecdotal information, which I would argue includes the patient surveys he has conducted himself, and his tendency, in places, to bat Altmann鈥檚 caveats aside. There is a lot of speculation and some hair-raising stories of how Medinger has taken on the role of human guinea pig and tried treatments despite a lack of reliable clinical data: he was once hospitalised as a result of a severe adverse reaction to the antiparasitic drug ivermectin, for example. But in the absence of effective medical help, I sympathise with his situation.
As Altmann says, with the sudden appearance of a new, common condition and an agenda driven by patients rather than the medical establishment, we are in uncharted territory. The conventional clinical trial is sacrosanct, and for good reason, but he wonders whether science can find faster ways of getting trials done. Just look at how the world produced a covid-19 vaccine within 12 months 鈥� a process that usually takes years. 鈥淚f this book can help to trigger some of those policy discussions about faster routes to trial and licensing, that would be a job well done,鈥� says Altmann. With long covid patients now numbering an estimated 150 million, we need to have those conversations sooner, rather than later.
Claire Ainsworth is a science journalist based in Hampshire, UK
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