“Has covid-19 gone?” My first thought every morning for six months. A few weeks ago, I was jubilant. The muscle aches had evaporated, my head was clear. I announced this to Rachael, a friend who knows chronic fatigue well. “Fantastic, Paul. You have found your baseline.” Crestfallen, I realised this was not the end; it was the end of the beginning.  

The beginning, a “near death” experience with covid-19 that I described earlier, was like a grenade had exploded in my hands. Dazed, deaf, and befuddled, I spent weeks wondering, where has the shrapnel lodged? Are some fragments still fizzing? In my heart? Is my brain still infected? Why was I stumbling for words?

I knew I needed to pace. My head was foggy, I lost my symptom diary spreadsheet, I forgot to measure screen time. I sought professional help, I wanted feedback, practical advice. I was desperate, tired, grumpy. I wanted someone to help me pace and thought occupational health could refer me to a specialist service. Instead, I was told I needed a course of cognitive behaviour therapy (CBT). 

Did I? I turned to Cochrane, the first stop for reliable current medical thinking and evidence. “CBT facilitates the identification of unhelpful, anxiety‐provoking thoughts, and challenges these negative automatic thoughts and dysfunctional underlying assumptions”. Crickey, I thought. Having recently suffered a 3-day relapse after a 10-minute bicycle ride, I peeked at the Cochrane review of “Exercise therapy for chronic fatigue syndrome:” the conclusion was that patients benefit, feel less fatigued, and that there is no evidence that exercise worsens outcomes (although I understand this review is being updated). 

This wasn’t helping me. I don’t blame Cochrane—it is an edifice I have helped create—but these reviews represent for me a serious disconnect between mainstream medicine and my own experience, although I am no specialist in this area. I turned to other narratives. I read about “boom and bust” cycles, but they didn’t help me, they sounded like a publishing house for dysfunctional love affairs. Charles Shepherd at the ME Association helped with explanations of the delayed payback with post-exertional malaise. This helped work out why I felt worse on some days, but not always—there is still a random element. Jennie Jacques, Open Medicine Foundation Ambassador, gave me good advice, and has written an excellent narrative online about how to pace. Convalescence is, as explained on the Leicester RICOVR/CRESTA videos, a full-time job. 

I was poorly compliant with my own rules though. Eventually, Peter, a friend and mentor who has phoned me every day for five months, gave a brilliant analysis that helped me crack it: “stop trying to dominate the virus; you need to accommodate it.” Peter was right. I wanted to beat it, but I was failing. The virus was still in charge. I had to do a deal with covid-19. I found national narratives, such as our prime minister’s repeated rhetoric that “we will beat this virus” unhelpful. I started on a path of learning to accommodate it. And that’s how I found my baseline. 

I believe there are thousands of people with long haul covid-19 who are overdoing it and making themselves ill with these relapses, across the whole spectrum of conditions. Many have fatigue, and overreaching causing relapse seems common. NICE guidelines from 2007 emphasise an individualised approach, and this is correct. We need people around us that listen and treat us with kindness, as we learn how to learn how to accommodate the illness. Websites and self-help apps may help, but alone are insufficient. A group of four of us have formed a pacing group, meet online weekly, and support each other daily. It really helps.

I agree we need research, but we urgently need guidance right now. The guidance should not be contingent on the research being completed. The guidance should be developed rapidly and updated in real time. I would favour a rehabilitation Tsar co-ordinating this, linking across specialists, generalists and patients within large networks. Others have done this already: witness the ICU/NHS Nightingale teleconference, with online specialists presenting, and inferences and observations made on the spot and circulated that day in an email that was amazing, influential, and widely disseminated.

For people with covid-19 who have experienced other people doubting the veracity of your symptoms, etch this experience in your memory for ever. If you are a man, remember women experience this more than you; if you are a doctor, remember people with ME/CFS have experienced this for decades; and if you are an employer, remember employees will be nervous about saying how they are, and will assume that you will disbelieve them.

I thought this was going to be a short illness. I wrote my first opinion piece after six weeks of unrelenting illness, and am now writing at six months, with an illness that resembles ME/CSF. What will I write in six years? Will I be better, with memories of a dystopic world when I became infected as part of a government strategy to develop herd immunity? Or will I be reflecting wistfully on my lovely life that vanished one day in March 2020?

Paul Garner, professor at the Liverpool School of Tropical Medicine. He is Director of the Centre for Evidence Synthesis in Global Health and co-ordinating editor of the Cochrane Infectious Diseases Group.

Twitter: @PaulGarnerWoof

Competing interest: None declared

Thanks to Peter, Rachael, Jennie, Charles, and my pacing buddies; my supportive team at work, and my understanding employer. 

Editor’s note: This article was amended on 6 September. The Cochrane review was originally noted as “exercise treatment for chronic fatigue.” This has been corrected to “exercise therapy for chronic fatigue syndrome.”