Chapter 1

Long COVID: What's really going on?

'Poor Alice! It was as much as she could do, lying down on one side, to look through into the garden with one eye.'

Lewis Carroll

Alice's Adventures in Wonderland, p. 13

Case: Iain's story

At the end of January 2023 I burst into tears as I opened the front door of Perrin's Corner and stepped outside. Dr Perrin had just declared it to be 'D-Day'. I was finally discharged. What I hadn't been consciously aware of until the tears gave me away, was that I had spent a long time uncertain that I would ever be well again.

I caught COVID-19 in April 2020. I had a bit of a sore throat and a headache. I hadn't suffered any problems with taste, smell or breathing and felt that I had got off lightly. I was finding my daily duties of caring for my young adult daughter, who suffers with ME/CFS and fibromyalgia, increasingly difficult. I was spending more and more time either in bed or on the sofa. Another daughter couldn't manage to go to work and joined me on the sofa where, on a good day, I got to experience her favourite Netflix shows. On a bad day, even watching TV was too much for me. I couldn't cook, I could read very little, I couldn't go out and see anyone or run errands, even conversation was difficult. I would be knocked out for a few hours if I spoke to my parents on the phone. Eventually, my wife connected the dots and had a conversation with the man treating our youngest for ME. A trip to see Dr Raymond Perrin revealed that I had post-COVID fatigue, as did my eldest and middle daughters.

You may remember that shopping involved queueing and going one way around the shop and scrambling for toilet rolls . and I could be of no help whatsoever. My wife, Michelle, as well as working full time, had to deal with these extended domestic chores, doing all of the cooking and cleaning and massaging three of us every day. She would get up, work online, get our breakfast, go back into her office, stop to get us drinks, lunch, do the shopping, get dinner and then massage us all.

After a few months of being treated with the Perrin TechniqueT in the clinic and at home I saw some improvement and could manage a short daily walk around the block. However, the progress was not in a straight line and I would plateau for several weeks at a time. It would be a joy to manage a few stretches and a longer walk, only to be unable to do them a few days later. I was constantly adjusting how long I thought it might take to get better and when I would be able to do more to support my family. My eldest and middle daughters were both back at work and discharged by Dr Perrin. I was still struggling physically, and the longer it went on, mentally.

Christmas came and went, with me doing next to nothing in the way of buying, wrapping, decorating and cooking.

A year after starting treatment, I remember being able to drive for a couple of hours, taking my daughter and son-in-law across country to a festival. I dropped them off and drove another half an hour to a quieter place to camp. I had to lie down for an hour before putting up my tent. I did nothing that evening. I did nothing the next day, I was so tired. By the time I arrived back to pick up my daughter from the festival, I had needed 48 hours rest for one 2½-hour drive. Despite how drained I felt, it was a huge milestone for me, to have driven for so long.

I have so many memories of sitting in various chairs and on benches, unable to complete a walk or a simple task. I promised some shelves for my now well daughter who had managed to get back to work and move out of home. I remember gathering some tools and wood together outside, then, unable to continue, sitting for a couple of hours in a garden chair before packing it all away again.

Dr Perrin and his colleagues, fellow Perrin TechniqueT practitioners, were a continual support, encouraging me and advising little tweaks and changes I could make along the way to improve my recovery. A year after that exhausting 2½-hour drive, I was well enough to commit to lengthier drives and eventually, in August to October 2022, I helped two friends by driving a support vehicle across the USA, from Philadelphia to Phoenix, while they cycled from New York to Los Angeles. At the beginning of the ride, I would be careful to manage my energy and take rests throughout the day. Six weeks into the ride, I realised I was no longer doing this. At last, I was capable of an average day without wearing myself out.

As I write this in January 2024, a year after I was discharged, I am still hearing, all over the country, of people who have not yet 'got over' COVID-19, but suffer with various ailments, but particularly with exhaustion. As I tell my story I am met with fascination and surprise, and occasionally scepticism. Two of my daughters got long COVID and were better after a few months of the Perrin TechniqueT. It took me a lot longer, a full 2½ years, but I too am better, and I no longer have to concern myself with conserving energy or worry that I won't be able to manage something. For that I am grateful to Dr Raymond Perrin.

Iain Every, Ashton-under-Lyne, UK
Patient of Dr Raymond Perrin

The naming of the disease

I mentioned in the Introduction the paper 'Into the looking glass', which I wrote with colleagues at the beginning of the pandemic in 2020.1 In this paper we named the disease 'Post-COVID-19 syndrome' as that was exactly what we predicted would happen, i.e. after patients had been hit with COVID-19, some would suffer from a long-term collection of symptoms (a syndrome).

According to a paper in October 2020 in the journal Social Science and Medicine2 the terms 'long COVID' - and 'long-haul COVID' - were collectively used by patients themselves in the first months of the pandemic. Patients, many with initially 'mild' illness, used various kinds of evidence and advocacy to demonstrate a longer, more complex course of illness than that originally announced by authorities. 'Long COVID' could actually be the first illness named through patients finding one another on social media platforms. Through various media this name reached formal clinical and policy channels in just a few months, in September 2020, with the paper 'Long-haul COVID' in the journal Neurology.3

The rest, as they say, is history, with at present over 2500 peer-reviewed articles on long COVID published across all sections of medicine since 2020. The term 'long COVID' is not used by all. The purists in the medical world use the more scientific term 'post-acute sequelae SARS-CoV-2 infection' or 'PASC'.

Defining long COVID

The National Institute for Health Care Excellence (NICE) in the UK has classified the condition into two types:4

1. Ongoing symptomatic COVID-19 for people with symptoms continuing on for four to 12 weeks, and
2. Post-COVID-19 syndrome for people who still have symptoms for more than 12 weeks.

Long COVID patients have been classified by the International Classification for Diseases (ICD-10-CM) with a specific code: 'Post COVID-19 Condition, unspecified' (UO9.9)5 and ICD-11 code (RA02).6

The World Health Organization (WHO) defines long COVID as:7

'a syndrome that occurs in individuals with a history of probable or confirmed SARS-CoV-2 infection, usually 3 months from the onset of COVID-19 with symptoms that last for at least 2 months and cannot be explained by an alternative diagnosis. Common symptoms include fatigue, shortness of breath and cognitive dysfunction but also others'.

The Centers for Disease Control and Prevention (CDC) in the US define it as 'new, persistent or evolving symptoms that are present four or more weeks after the initial infection'.8

But by far the simplest definition is stated in The Long COVID Handbook by Gez Medinger and Professor Danny Altman:

'long COVID is a long-term consequence of SARS-CoV-2 infection lasting beyond the initial 'acute' phase affecting multiple bodily organs and systems causing a huge variety of symptoms and of varying severity and duration, potentially relapsing and remitting over time'.9

The Office of National Statistics (ONS) in the UK estimated 1.9 million people living in private households in the UK (2.9% of the population) were already experiencing long COVID symptoms three years after the epidemic hit the UK (March 2023).10

Alas, at the time of writing this book, patients with long COVID suffer the same stigmas and barriers to proper healthcare as was, and still is, the case for many patients suffering from ME/CFS. The problem...