We need to listen to communities of people who have recovered from illness, says Paul Garner
I loved my job, had good friends, and felt as high as a kite on life. Then I got covid-19, and nothing prepared me for what happened next. As the illness developed, I felt so unwell I thought I was dying. The roller-coaster that followed lasted for months, with sudden waves of illness and malaise, like being hit by a cricket bat. I had a foggy head, acutely painful calf, upset stomach, tinnitus, aching all over, breathlessness, dizziness, arthritis in my hands, weird sensation in my skin, extreme emotions, and utter exhaustion and body aches throughout. I had ringing in my ears, intermittent changes to my heartbeat, and dramatic mood swings. After three months I was unable to be out of bed for more than three hours at a stretch. My arms and legs were permanently fizzing. I wondered: was the virus still there? Or did I have ME/CFS?
In those first few months, I found little in the medical literature that helped me deal with the symptoms. I found that I needed to be careful not to overdo things or the illness would echo back. Leaflets from ME/CFS advocacy groups had advice about not overdoing it. I learnt that the exhaustion I experienced after trying to exercise at week seven is termed “post exertional malaise” and is a key symptom of ME/CFS. I read that if I pushed myself, the raised heart rate would make me ill. I decided that dominating the virus did not work. I needed to accommodate it for a while.
While pacing made sense initially, I became obsessive as the months passed in an attempt to avoid my symptoms. I started unconsciously monitoring signals from my body. I sought precipitating causes. I became paralysed with fear: what if I overdid it? I retreated from life. I started telling my friends that long covid was a metabolic disease that had damaged my mitochondria. I wasn’t depressed, but mentally low, and relapses were more common. Then an article in Nature linked me personally to ME/CFS. I fulfilled the Canadian Consensus Criteria for CFS/ME. Seven months after the initial covid-19 I was referred to a CFS/ME specialist. The ME community sent me unsolicited emails about mast cell deactivation, biological causes of my illness, and told me to rest.
I knew the symptoms were real, but somehow these pure biomedical explanations felt wrong. While waiting for the appointment, I cast around my international network of medical evidence specialists for help. I was put in touch with a PhD candidate in psychology from Norway who had completely recovered from post viral fatigue syndrome (CFS/ME) years ago and offered to share the recovery story. The story was very similar: no previous illness, no psychological problems, only long-lasting debilitating symptoms after an infection. I was asked, “are you open to the idea that you can have an impact on your symptoms with your conscious mind?” I thought back to an earlier experience in my 30s with being able regulate my tinnitus after quinine, and said yes, straight away.
This opened the door that led to my recovery. I learnt that our primitive and unconscious defence mechanisms against injury and infection in the brain and other parts of the body sometimes get disturbed, giving false fatigue alarms. A vicious cycle is set up, of dysfunctional autonomic responses being stimulated by our subconscious. These neural tracks become established like tyre tracks in mud. I learnt that I could change the symptoms I was experiencing with my brain, by retraining the bodily reactions with my conscious thoughts, feelings, and behaviour. Over the following weeks, with support, I learnt how to do this. I suddenly believed I would recover completely. I stopped my constant monitoring of symptoms. I avoided reading stories about illness and discussing symptoms, research or treatments by dropping off the Facebook groups with other patients. I spent time seeking joy, happiness, humour, laughter, and overcame my fear of exercise. I started slowly with some graded physical activity on a bicycle. Within two weeks I surprised myself with an hour of Military Fitness training in Sefton Park with my friends. I was overjoyed, with all the great memories of running around the park with my friends. I began to build back my strength.
After a couple of months, my recovery was tested. I developed acute dengue fever while on holiday. The acute illness settled, I returned home, but multiple stresses meant the chronic fatigue symptoms recurred: the muggy headaches, aching muscles, and severe exhaustion. I now knew that I wasn’t physically ill, and with some friendly reminders I knew what to do. One afternoon, I felt as though I had been drugged, and felt so heavy I thought I could not raise my arms from the bed. I knew the symptoms were real, but I needed to distract my brain from them. So I thought, let’s do it: I will either die or recover, I got out of bed and went to Sefton Park to join a military fitness session. It was fabulous, and the exercise pushed the aches and fatigue aside. I slept well and felt better the following day. I was back on track.
I know ME/CFS is associated with a variety of viruses and possibly other factors too, and recognise that the postviral syndromes have a wide spectrum of clinical manifestations. My experience may not be the same as others. I feel that I have looked down the barrel of the ME/CFS gun and disarmed it. I believe that we can unwittingly reinforce, as Pavlov has shown, the dysfunctional autonomic tracks in the brain set up by a virus long gone.
I write this to my fellow covid-19 long haulers whose tissues have healed. I have recovered. I did this by listening to people that have recovered from CFS/ME, not people that are still unwell; and by understanding that our unconscious normal thoughts and feelings influence the symptoms we experience.
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.