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This story is from the Anamnesis episode called Heal Thyself and starts at 3:04 in the podcast. It's from Paul Garner, MD, a professor at the Liverpool School of Tropical Medicine and director of the Centre for Evidence Synthesis in Global Health, who works on guideline development for infectious diseases.
I'm 65, and I'm fit and well. When COVID struck, I was enjoying life. I was doing lots of running and cycling. I felt I was titanium-plated in some ways. The disease was traveling very rapidly through the U.K. I was on a conference call talking about COVID in the U.K. when someone on the call said, "This disease is doubling every 3 days. Anybody that feels unwell in the slightest should immediately self-isolate."
I had actually felt a bit strange that morning.
Sick for 11 Months
I went home, thinking, "Well, maybe this is what I should do." I stayed at home and felt a bit strange, but suddenly then on the 4th day I was struck with an illness like I have never experienced before.
I was thrown into bed with absolute exhaustion and sweating. It was like looking down a long tube. It was horrible. I thought I was dying. I was Googling myocarditis and COVID as I lay in the bed. I just sort of passed out, lying down.
Then a couple of hours later I woke up to this most extraordinary illness that went on and on and on. I was ill for a total of 11 months. Utter exhaustion, aches, palpitations, headaches, feeling cold, messed with my mood.
In those first few weeks, there were these constant attacks of this illness. Then it would sort of vanish for a few hours and I was left feeling like a rag doll.
This was all happening while I was watching the news with deaths increasing and ambulances and sirens going on all around. It was a really dystopic world that I felt I was living in.
Every day I woke up and thought, "Today is the day that I'm going to be better." One day I did actually feel quite a bit better and so I did a high-intensity interval training [HIIT] class in my front room for half an hour, which was a mistake. I was thrown back to bed, with the symptoms even worse the next day.
That continued for up to 6 months. I was deaf, I had tinnitus, and pins and needles, and palpitations. Waking up at night with palpitations is terrifying. Fasciculation in the skin; I could see my muscles twitching under the skin. Terrible, terrible headaches like you've never ever had before. I developed difficulty with speaking. I couldn't read. I couldn't always find the words. I kept losing words.
I was seen by a hospital consultant at the time, who was great. I went in expecting lots of tests. My friends had all told me that cardiac problems were common and renal problems, and I should get lots and lots of tests.
He just said, "Paul, you know what? I think you've got a post-viral syndrome." We ended up talking about whether to add ginger to carrot juice for breakfast in the morning. It was a very clever intervention. It took my focus off worrying about my organs and reassuring me that he thought I'd get better.
Being Obsessive Didn't Help
At the same time, the U.K. NHS [National Health Service] advice on how to manage this fatigue was absolutely awful, though. The leaflets were badly written. I actually couldn't read, so they didn't help very much. I had to learn myself that mental, physical, and emotional energy all compound to give you the kickbacks if you overdo it.
There were times then when I was actually only up for an hour or two at a time before I'd have to have a lie-down and give myself a bit of a rest to calm myself down.
Of course, during this time, I was obsessively monitoring. I'm a scientist. Of course, I'm going to be doing this and trying to work out what the triggers were, and what my was doing.
None of it really made sense, but the obsessiveness didn't really help, I think.
A friend brought a cake around and we both had a slice. Then they went and I scarfed the rest of the cake because I hadn't had anything sweet for ages, and I felt dreadfully guilty. Then the next day, I felt awful. I thought, "Oh my goodness, I'm allergic to sugar."
I know as time went on into the 7th month, the night sweats declined and the being beaten up by this virus declined, but I was still unwell. I became convinced there must be some hidden biomedical cause that my mitochondria was somehow crippled.
I felt out of control. I felt full of fear and really fear about whether I would ever get better. I thought, maybe I'll have to retire. Maybe I'll never run again. At the same time, there were all these media stories of catastrophic organ damage and so on in people with long COVID.
Would I Ever Feel Better?
Then, just by chance, through my network, I came across someone who had recovered from very severe ME [myalgic encephalomyelitis]/chronic fatigue syndrome. This person started talking to me. This person was really encouraging and started by telling me that actually she thought I was going to get better -- in fact, I'll probably be better in a few weeks -- and simply the hope helped.
Then this person gave me the explanation of what was happening in my brain and how the brain stress response goes into overdrive, and helped me understand my view of my symptoms. I changed what I thought and how I valued my symptoms. They helped me relax when I found it difficult to find words.
This simple relaxation technique happened once, and I stopped having a problem with word loss.
I used visualization techniques to deal with the fatigue. I stopped monitoring my symptoms. I stopped talking to others about my symptoms and concentrated on other things in life, and planning good things for the future. It was absolutely remarkable how this changing of a worldview, of changing, how calming the response that I got, how quickly my symptoms declined.
Really, I learned so much about how the brain interacts with the mind and the body, and how the symptoms are maintained by this stress and insecurity.
Indeed, after I recovered, I became unwell with dengue, fortuitously. A month after recovering from the dengue, I was suddenly struck down with fatigue like I had been drugged. Like I have taken a Mogadon [nitrazepam]. I could hardly lift my hands from the bed. It was the old illness back.
My helper phoned me and said, "What's been happening, Paul? What's going on? What's happened?" It turned out that the GP had phoned me up a week previously to say my liver function tests were abnormal and which you might expect after dengue. But I had started thinking, "Oh, my goodness. This must be COVID interacting with dengue."
I had actually got a biomedical cause for my symptoms. Just these thoughts had brought the illness back. As soon as that became clear and explained, the symptoms went. It was absolutely extraordinary.
Certainly, the shutdown that one experiences, the autonomic response that happened to me early on in the illness when I did the HIIT class, I can see how that can lead to classical conditioning, which would explain these recurrent kickbacks that I had with when I did a bit too much.
That's my story. I'm much better now. I'm recovered. I have changed my life a little bit. I'm trying to look forward to the future, avoiding stress, and trying to communicate the knowledge that my experience of long COVID is one where the explanation of what was happening to me and understanding that I had some agency, some control, was very important to my recovery.
Check out other stories from the Heal Thyself episode, including "I'm a Neurologist With Alzheimer's" and "Prayer's Place in Treatment."
Want to share your story? Read the Anamnesis Storyteller Tip Sheet and when you're ready, apply here!