We need to talk about Long Covid

I am one of the lucky ones: I made a full recovery

First, a confession. I spent much of the past weekend wondering if I should write this newsletter.

Normally I’m telling you about dark money and hidden influence in our politics. (And there will be more of this coming tomorrow.)

But today’s newsletter was prompted by something very different: the death of Derek Draper, last week, at the age of 56. 

I didn’t know Draper personally. He was a well known face in British political life long before my time. But his death shook me. 

Draper died as a result of Covid. He was hospitalised with the virus in March 2020 and placed in a medically-induced coma. As well as damage to his kidneys and liver, he developed holes in his heart. 

After 374 days in hospital, Draper eventually returned home where he required 24-hour care. He needed to be fed through a tube directly into his stomach and could not breathe properly. He had a heart attack before Christmas and died on January 5.

A few months ago I was at a journalism awards ceremony where Draper’s wife, TV presenter Kate Garraway, spoke. Garraway has been tireless in campaigning for her husband - and for others “battling the system” to secure essential care for Long Covid sufferers. 

Derek Draper’s case was particularly acute, but while Long Covid rarely hits the headlines it is incredibly common. 

An estimated 1.9m people in the UK (2.9 percent of the population) were living with Long Covid last year, defined as symptoms continuing for more than four weeks after a Covid infection. We don’t know how many are suffering from Long Covid today as the Office for National Statistics no longer collects data about Covid infection rates. 

Long Covid can be a very lonely illness. As well as the debilitating fatigue, pain and other symptoms, sufferers are often faced with quizzical looks from health professionals and others that say, often without saying anything, “is there really anything wrong with you?” 

I know this because it happened to me.

My story is pretty typical, except, perhaps, that it has a happier ending than many. 

In late summer 2022, I contracted Covid. The virus hit pretty hard but after a few days I thought I was over the worst of it. I was feeling tired and drained but I returned to work, determined to power through it.

But, for once, I found I couldn’t power through. After 10 minutes looking at a screen - pretty essential for an investigative journalist - my mind was completely fogged. I had constant migraines.

And then, somehow, it got worse. I struggled physically to get out of bed. Even routine tasks - washing and clothing myself - became Herculean efforts. Work became impossible. I went to the doctor. He gave me antibiotics. They made no difference.

Suffocating under the weight of unanswered emails and texts I did something I had never done before: I tweeted about how I needed to take a break.

Other Long Covid sufferers among my friends and contacts realised what I was going through before I did. Many got in touch with invaluable advice, about conserving energy and ‘pacing’. 

As summer turned to autumn, I found an amazing doctor in London. An expert in fatigue illnesses, he told me that there was a “95 percent chance” I would be fine in six months - if I downed tools completely and did “comically little”. 

Normally I would find doing “comically little” nigh on impossible. My usual mode since I began my career in journalism has been working 90mph. But I was so exhausted that all I could do was lie on my couch for days on end, alternating between sleeping, watching old episodes of the Simpsons and listening to the Second Captains podcast. 

I subsisted mainly on microwaved soup, which took the minimum of exertion. I quickly started losing weight. (Which, annoyingly, I just as quickly put back on later.)  

After what felt like an eternity - but was really only a few months, although it did include the entire Liz Truss premiership - I started to improve. I found I could read in short bursts. I could walk 500 metres without needing to take a rest. I could hold conversations. 

By Christmas, I had 75 percent of my strength back. A few months later, I was even stronger still.

Looking back on it now, it almost feels like another lifetime. I am one of the lucky ones: I have made a full recovery. 

Many have not been so fortunate. I know people who almost three years on from a Covid infection struggle to work more than a day or two a week. Some have gone to extremes - such as “blood washing” - in their attempts to find a cure. 

Many have lost their jobs. A person with Long Covid symptoms after seven to 12 months is 40% more likely to be out of work than they were before they had Covid. For those on low incomes and in precarious work the impact is often far, far worse. 

Long Covid has had a huge impact on healthcare workers in particular it seems. In just one year, a single NHS Trust, South London and Maudsley, recorded 2797 days of staff absence due to Long Covid, according to seemingly unpublished Freedom of Information responses on the website WhatDoTheyKnow. (There’s a story for a health reporter in going through all those FOI releases.)

Knowledge about Long Covid in the UK is limited. Part of the problem is a longstanding, misogynistic ignorance of fatigue illnesses. For years illnesses such as ME were often diagnosed as a form of hysteria, with sufferers - predominantly women - dismissed. 

Since Covid, sadly, almost everyone knows someone who has endured fatigue. Yet funding for Long Covid is insufficient. 

Although around 2m people had been living with Long Covid, by the end of 2022 NHS England had invested just £224m in Long Covid services - which is not much more than the NHS contracts doled out to Michelle Mone.  

There are some glimmers of hope. Recent research in the Netherlands found that the muscle cells of Long Covid sufferers change due to the illness. This could be really invaluable for helping design recovery plans that actually work.

Even once it’s over, Long Covid can leave a long tail. As I discovered, while the body might have recovered physically, after a long illness there is still a part of the brain that worries about being able to work, to live, as you once did. 

This newsletter, and the support of so many of you who read it, has really helped to slay some of those demons: or at least, to keep them at bay. And for that I am thankful to every reader.