Dr. Paul Garner, UK

The initial battering

In mid-March I developed covid-19. For over 6 months I went through a roller coaster of ill health, extreme emotions, and utter exhaustion. Although not hospitalised, it was frightening and long. The symptoms ebbs and flows, but never goes away. It was difficult to understand and cope with the constantly shifting, bizarre symptoms, and their unpredictable course.

It started off when I felt strange at work. I went home, and nothing much happened for a few days. Then suddenly the heaviness and malaise which rapidly worsened., I had a tightness in the chest, and realised it had to be Covid-19. I was mortified that I might have infected the staff I had worked with for over 20 years. I imagined their vulnerable relatives dying and never forgiving myself. My condition deteriorated. One afternoon I suddenly developed a tachycardia, tightness in the chest, and felt so unwell I thought I was dying. My mind became foggy. I tried to google fulminating myocarditis but couldn’t navigate the screen properly. There was nothing to do. I thought if this is it, so be it. 

A few hours later I woke up, alive, and the tightness replaced by extreme fatigue. Every day, day after day. Sometimes I felt better and became optimistic; after all, the paralytic state had not recurred; but then the next day I felt as though someone had hit me around the head with a cricket bat. The illness went on and on. The symptoms changed, it was like an advent calendar, every day there was a surprise, something new. A muggy head; acutely painful calf; upset stomach; tinnitus; pins and needles; aching all over; breathlessness; dizziness; arthritis in my hands; weird sensation in the skin with synthetic materials. Gentle exercise or walking made me worse—I would feel absolutely dreadful the next day.

The roller coaster

I committed to rest and recovery, but it was not easy. I held two opposite ideas in my head: the need to convalesce, and that I could truncate the recovery by pushing my limits. But it was as if I was being followed by phantom speed cameras. You don’t know the speed limit and you don’t know when the penalties will arrive. You find out that when they do they are harsh, stopping you in your tracks for days. I had to reframe my life practically, psychologically, and spiritually. I learnt that the “busts” can be experienced as a reprint of their entire symptom complex in the acute phase. I had fatigue, headaches and tingling nerves as my main symptom, and that’s what comes back when I overdo it. I learnt that in convalescence after a severe assault, the body goes into protect mode, so if it isn’t getting space to recover, it shuts you down by bringing an embodied memory of the illness. I watched videos with Lorimer Mosely about chronic pain but still could not work out what was happening.

The boom/busts continued. 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

I found the health service advice online not very helpful, although some literature related to managing chronic fatigue syndrome and other post viral conditions helped a little. 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 accommodate the symptoms. Websites and self-help apps may help, but alone are insufficient. A group of four of us formed a pacing group, meet online weekly, and support each other daily.

The fear

By the seventh months I was becoming fearful, battered, uncertain of the future. It felt like being in an abusive relationship, I didn’t know what was happening, when I would feel better, or when I would be attacked again. 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 careful: 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. I was referred by my doctor 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. Indeed, one person told me that this illness was actually “short haul”-and to prepare myself for an illness that might last the rest of my life.

Opening the door to recovery

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 unconscious 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 triggered my brain anf 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. 

Reflecting on life

I am now well. I sometimes feel tired if I there is too much stress at work and to little sleep at home, but then that was happening before: I remember before being ill with covid-19 after 9 hours at work and still not finished I might nap on the floor-I remember telling staff this so they didn’t think I had collapsed.

I have learnt so much. I became well by listening to someone who had recovered from ME/CFS. I knew the virus had gone. I knew the symptoms were real. I believed the symptoms were the result of the brain body regulatory systems being dysregulated from being on high alert for too long; and I believed that what I thought, what my expectations were, and how I managed myself with my thoughts, my activities, my conversations, all influenced my symptoms. Feeling insecure, or suddenly regressing back to the virus having “damaged the body”, simply brought back the symptoms. Once I had put these thoughts aside, I was back on top. Having some agency over the symptoms helped me recover. It’s messy, it takes time and patiente and you need to keep your eye on the goal. People’s paths are varied. What is critical is to set aside that this illness is entirely biomedical. There may be biomedical consequences, and the symptoms are real, but you as a person and your belief in the mind-body connection are key to recovery. You believe you can recover? Then recover you will.