Rowland Manthorpe, a technology correspondent for Sky, has been afflicted with COVID for over 18 months and has chronicled his ongoing struggle.
I have never competed in a triathlon. I have never climbed a mountain or swum across the English Channel. I have never gone on a hiking vacation.
Why am I sharing this with you? Because most articles about long COVID begin with a description of the physical feats that patients can no longer perform.
Observe, the authors state. Once upon a time, these individuals were so healthy that they ran ultramarathons in their free time. Now, they can barely reach the stores.
It’s not exactly incorrect, but it’s never rung true to me because when long COVID saps my energy, it’s not the big things I miss, but everything else.
Energy to read or watch a television program. Energy to make and execute plans, or to be spontaneous. Energy to peacefully spend time with loved ones. Energy to experience sensations other than crushing fatigue.
Victoria, a teenager I recently met, was diagnosed with long COVID fifteen months ago, just before her twelfth birthday. She uttered in a whisper, “I did not reach the age of 12.” I didn’t get to be 13 either. I just hope I get to be 14.”
What are you most nostalgic for? I asked her. Victoria gave a pitiful shoulder shrug. “Life,” was her response.
Long COVID is an incredibly diverse condition, and in many ways, my experience was vastly different from Victoria’s; however, she nailed it with that single word.
I wasn’t running ultramarathons eighteen months ago, but I had a partner, a two-year-old son, and a demanding full-time job, which was, to be honest, quite enough.
I never felt like I had enough time, and I occasionally complained of being exhausted, but in retrospect, I had an abundance of energy.
It wasn’t just that I could get up in the middle of the night to comfort a crying child and then do live television the next day without too many people noticing. I performed astounding physical and mental feats without even realizing it.
I frequently performed multiple tasks simultaneously at high speed. I focused intensely, sometimes for hours at a time. I was able to complete one task and immediately begin another, even if it was just changing a diaper and taking out the trash.
I went through life with the knowledge that I was generally healthy and that if I became exhausted, sleep would restore me.
All of that ended in March 2021, two months before I was scheduled to receive my coronavirus vaccination.
The change occurred like a lightning bolt from a clear blue sky. I had been under the weather for a couple of weeks – nothing serious, just a persistent cough that I couldn’t shake for some reason. I took a day off from work and continued. On March 19, I awoke to find that everything had changed.
I was so exhausted that I couldn’t think straight, even though I had slept all night. I felt as if I had been awake for days, despite having slept the entire night. When I attempted to text my boss to let him know I wouldn’t be able to make it to work, it took me more than an hour to compose a coherent message.
Eventually, I sent out a brief message of apology. Then I returned to bed, where I remained for three consecutive days. It should have been frightening, but I was too exhausted to be frightened. The need for rest dominated every thought and emotion.
After a few days, I dragged myself out of bed, feeling somewhat revitalized. I thought, anticipating my imminent return to the office, “I’ll just check my email.”
When I opened my inbox, I felt exhausted. It struck, it was so sudden and powerful. Not even words like fatigue could adequately describe it. It was as if someone had reached inside of me and cut the power at the source.
Even with a week of bed rest, I was only able to return to my previous state. It was a harsh introduction to the iron rule that would govern the rest of my life: if I pushed myself too hard, I would pay for it.
A few weeks later, when I spoke with my physician, he advised me to push myself. He suggested I begin gradually increasing my activity levels. He referred to this as “gradual exercise therapy.”
The over-the-phone consultation was not reassuring. The physician seemed uninterested in fatigue and brain fog. He questioned me regarding my response to walking and running. Multiple times, he inquired, “Are you certain you do not have difficulty breathing?”
I didn’t. My issues were predominantly cognitive and not physical. After overcoming the initial wave of exhaustion, I was able to walk to the stores and observe my son in the park. But I was a mental invalid.
I earned a living by writing and speaking, but both activities were now as exhausting as running a marathon. A 15-minute phone call would exhaust me for the remainder of the day. As soon as I attempted to concentrate or concentrate, my energy would escape like air from a punctured tire.
This explanation failed to convince the doctor. Without a specific physical issue, he was unable to refer me for immediate treatment.
What is the status of the long COVID clinics? I asked. I recently read that the government had provided funding to the NHS for specialized treatment centers.
You must have symptoms for three months,” the physician stated. If you’re still having problems, please call me back and I’ll see what we can do.
It seemed so distant that I doubted its relevance, especially since I could work on increasing my stamina. But when I tried to follow a graded exercise guide I found online – the doctor had simply advised me to do a little more each day – I felt terrible. In contrast to what I had anticipated, my strength was being sapped.
Long-term COVID patients exhibited similar symptoms. I discovered that graded exercise therapy was extremely controversial among patients with post-viral fatigue, ME, chronic fatigue syndrome, and other similar conditions, who believed it made recovery more difficult. There was even a term for how exertion exacerbated my symptoms: post-exercise malaise.
Long COVID is an umbrella term that encompasses a dizzying array of symptoms and conditions affecting every organ system in the human body, and it is still unclear whether it is a single disease or a collection of diseases. Nonetheless, a characteristic shared by nearly all symptom groups is this almost allergic reaction to overexertion.
Danny Altmann, professor of immunology at Imperial College London, says, “I cannot emphasize the significance of rest enough.
“Increasingly, we’re trying to move on with our lives and ignoring COVID and COVID infections and reinfections, aren’t we? And part of that is, you know, just ignoring it and pushing through it. As someone who has spent the last two years contemplating long COVID, I can only say that is the worst thing you could do.”
Abandoning graded exercises was fairly simple. The general practitioner had not provided me with a schedule, so I had nothing to follow, and I eventually gave up. Stopping other types of exertion was far more difficult. Possibly if my problems had been physical, I would have found it easier to hold back, but I had to prevent myself from overthinking. How do you accomplish this?
I repeatedly attempted to return to work, but I always ended up in a state of collapse.
My supervisors and coworkers could not have been more supportive and never put me under pressure to do more, but neither they nor I were able to prevent me from overworking.
On one occasion, I was so exhausted from rushing to meet a deadline that I was physically incapable of reading The Tiger Who Came to Tea to my son. Once again, I required recovery time in bed.
Nothing was consistent. Long COVID is a fluctuating disease, so there were days when everything seemed brighter, and each time this occurred, I convinced myself that I was on the mend. Strange as it may seem, I simply was unaware of how bad I truly was. The truth didn’t hit me until nine months later when I had finally recovered enough to discuss my partner’s experience with her.
She told me that I appeared roughly the same on the outside, albeit a bit older and grayer. My mind would shut down, however, whenever she attempted to engage me in a conversation about anything other than the weather. “It was as if you were drunk,” she said, not only because I was incoherent but also because I was unaware of my incoherence.
The majority of studies on the numerous symptoms of chronic COVID classify patients into three distinct categories: cardiovascular, respiratory, and neurological. My brain issues prevented me from recognizing my brain issues. I was so slow that I could not perceive my slowness.
This was a difficult truth to uncover. It pains me more than words can express to consider the burden I’ve placed on my partner, who has handled it with extraordinary patience and fortitude. She, along with tens of millions of other hard-pressed caregivers, is a victim of COVID just as much as I am.
During this time, I expended whatever remaining energy I had pursuing treatments.
I visited an exorbitantly expensive private clinic, where an exhaustive battery of tests determined that I was in perfect health. I experimented with dozens of supplements recommended by social media users and spent one hour per week in a hyperbaric chamber to increase the amount of oxygen in my blood.
After each failure, I felt foolish for pursuing unsupported treatments. However, what else was I supposed to do? There was no evidence to prove or disprove the efficacy of these treatments, as they had never been thoroughly examined. Like every other long-term COVID patient, I was isolated from scientific knowledge and conducting self-experiments.
Eventually, 15 months after my initial symptoms, I was able to obtain an appointment at an NHS long-term COVID clinic, where I hoped to receive authoritative direction. When I arrived, however, they rejected any treatment ideas, stating that there was insufficient evidence to support their use. Instead, they suggested that I concentrate on anxiety management.
This was new news to me. In addition to the stress of my condition, I did not experience unusual anxiety. “Are you suggesting that the issue is in my head?” I asked.
Not at all, replied the doctor. However, anxiety management can be extremely beneficial for this condition. He suggested that I join another waiting list for a few cognitive-behavioral therapy sessions (CBT).
I felt relieved and even elated as I left the clinic, even though it was a tremendous setback. At last, I’d been heard. The NHS finally acknowledged my existence.
Victoria, age 13, felt similarly. Sarah, the child’s mother, recalled, “She walked out with a huge grin.” “And then she simply stated, ‘They believe me. They are aware that I am in pain and that it is real.’ Then, when we got home, we realized that they were powerless. “What is the point of this diagnosis if they cannot do anything about it?”
A few days after my scheduled appointment, I felt the same dread.
No NHS treatment was available, nor was there any hope of one shortly. When I mentioned drugs that had helped other patients, including those being studied in clinical trials, the doctors brushed it off as a placebo effect. No brain scans or tests of mitochondrial function were performed. For individuals with my set of symptoms, all roads led to CBT.
Why were there not more treatments available at the clinics?
When COVID-19 emerged in early 2020, it was a brand-new virus, but within a year, scientists developed three highly effective vaccines and identified several excellent treatments. More than two years after patients first drew attention to long-term COVID, there was nothing remotely comparable.
Dr. Charles Shepherd, the honorary medical adviser to the ME Association, provided me with the answer. In the late 1970s, he contracted chickenpox from a patient while working long hours at Cirencester Hospital as a fit young physician in his early thirties. The chickenpox disappeared, but Dr. Shepherd never fully recovered. Instead, he was left with “activity-induced fatigue, brain fog, problems with short-term memory, concentration, attention span, and information processing,” which was eventually identified as myalgic encephalomyelitis (ME).
The symptom list was all too familiar. Dr. Shepherd and I had been diagnosed with nearly identical diseases forty years apart and, what was worse, had received nearly identical treatments. Dr. Shepherd represented a medical enigma. I was, too.
Almost no progress had been made in uncovering the nature of post-viral disease during the four decades that separated our two collapses.
The reason was not difficult to discern. “The medical community viewed ME as hysterical nonsense,” explained Dr. Shepherd, recalling how he had been ignored and disregarded by his peers. Even when reluctant acceptance was granted, research funding was not forthcoming.
Twenty years before the pandemic, there were only 2,007 new scientific publications on ME/CFS.
During the same period, there were approximately 45,000 publications on psoriasis and 114,000 on Parkinson’s disease.
The chart below demonstrates that per patient, ME/CFS receives a fraction of the research funding of other similar conditions, despite evidence that it reduces the quality of life more than others.
If there had been sufficient funding for ME/CFS, could we have a treatment for my kind of long COVID? I asked Dr. Shepherd.
“I believe the answer is yes,” he responded. We have experienced a period of missed opportunities due to a lack of interest and funding.
Funding has been growing.
The National Institutes of Health estimate that ME/CFS research will receive $17 million per year in 2022 and 2023, a twofold increase; however, as the graph below demonstrates, this is still only 4% of the $472 million that researchers estimate should be allocated annually to match the social burden of the disease.
Money has also been invested in the study of long-term COVID, including the numerous symptoms that are not similar to ME.
However, after a brief acceleration during the pandemic, research has slowed to its usual pace, and funding awards frequently prioritize psychological stimulants over innovative science. (Recently, the National Institute of Health Research awarded £1 million to a study investigating whether weight loss could help long-term COVID.)
It was a relief to comprehend why there wasn’t more treatment available, but my investigation provided me with little solace. Unless a large-scale research initiative is launched, there is little chance that a scientifically-supported treatment will arrive soon for most patients like me. We must make do with the resources available.
Dr. Julie Denning was the individual who eventually rescued me from my lengthy COVID coma.
She was a specialist in vocational rehabilitation – a health coach – provided by my insurance provider. She was employed by the company Working to Wellbeing.
When I learned I would be receiving a health coach, I initially rolled my eyes. I desired medication or treatment, not scheduling advice. “I am an adult,” I thought. “I can manage my own time”
But I was unable. I was unable to stop pushing myself in ways that hindered my recovery. I was unable to break the cycle of energy boom and bust.
Dr. Denning was able.
She acted as a liaison between my supervisors and me, creating a schedule that accommodated my condition rather than the other way around. During the first six months, nothing changed, but Dr. Denning prevented me from losing touch with work and hope. She was a combination of human resources professional, counselor, and nurse.
She taught me to accept my situation above all else. Instead of fighting my illness, I began to adapt to it. I learned how to recognize my brain slowing – a forgotten word, a simple action that has suddenly become confusing – and intervene before the situation deteriorated. The pacing was not simple, but I was learning the art.
With her guidance, I began to gradually improve. I worked half days, then half days consecutively, then two-thirds of a day. Eventually, I was able to undertake the project you are currently reading. It was completed over several weeks with frequent breaks, but it was accomplished. That felt huge.
In the absence of scientifically validated treatments, this is the type of support that long-term COVID clinics may provide, tailored to each of the disease’s numerous symptoms. At present, most do not.
The quality of clinics varies widely across the nation, with some truly being centers of excellence, while the majority offer neither assistance with work nor treatment for more than a few core symptoms.
Dr. Elaine Maxwell states, “A new model is required.” Every day, some people assist those with brain fog. As far as I can tell, none of them are working in the long COVID clinics. The same holds for other disciplines. We are not making the most of the information we possess.” The majority of clinics lack specialists in postural tachycardia or mast cell activation syndromes, for example, despite their well-established link to long COVID.
Dr. Maxwell, the author of two NIHR studies on long-term COVID, desires that the clinics adopt the model of other specialisms and introduce clinical nurse specialists to assume responsibility for patient care, providing immediate practical assistance and directing them to the best help available across the NHS. This type of assistance can be lifesaving for a group that is frequently stressed, fatigued, and not always thinking clearly.
Long COVID patients have access to additional sources of support, such as Long COVID Support and Long COVID Kids, which have been a lifeline for Victoria and her mother Sarah. The first thing people tell us when they join our group is that they don’t feel alone,” says Jo House of Long COVID Support.
However, obtaining simple assistance or recognition from employers, pension funds, or government agencies feels like an uphill battle all too frequently. Despite all the press coverage and testimonies, it often feels as if many individuals still do not believe that long COVID exists.
I am no longer better. I may never get better.
However, I am aware that if I am cautious and work within my limits, I can work, complete tasks, and enjoy time with my friends and family. I can live, as opposed to merely existing.
That may not be all that I desired, but it is something. Everyone deserves the opportunity to acquire something.
