Tracey Spicer’s slow road to recovery from the ‘living death’ of long COVID

Last January, author and journalist Tracey Spicer caught COVID. Her recovery was slow – and then in February, her symptoms came back with a vengeance.

For months, she endured a “living death” with long COVID, dragging her “corpse-like body” around the house. She had a tiredness that sleep could not ease and a pain in her chest that often felt like a looming heart attack. She was in and out of a wheelchair.

On Tuesday, when I called Spicer, the excitement in her voice was palpable. “I’m genuinely feeling 80 per cent better,” she told me.

Tracey Spicer, seen here in a photo from 2018.Credit: Janie Barrett

She can hold long conversations on the phone again. Her blood tests, for so long in the red, are back in the black.

So much of what I’ve written about long COVID in the past has been dark: lack of funding, lack of treatment.

Spicer’s story is one of hope. And it has important things to tell us about the course of this disease and how to approach treating it.

“There is a light at the end of the tunnel,” she says. “It does not necessarily mean you’ll feel like this for life. Because honestly, it feels like a living death – and to know you’re not going to feel like this forever is priceless.”

Spicer’s recovery hasn’t been linear. “More like a squiggle,” she says.

It took her at least six months to find a treatment approach that worked for her. Even then, it wasn’t until September that she started to feel a little better.

Then, just as she was beginning to have some hope, the symptoms closed in again. Overexcited by her recovery, she’d pushed herself too hard. Two steps forward, one step back.

“It is immensely frustrating,” she says.

“Then, a week before Christmas, I just started feeling really phenomenal. And I just started going up exponentially from there.”

Does long COVID simply naturally improve over time? Maybe. Doctors report seeing this in clinics; data suggests symptoms decline by 12 months in children. The picture for adults is much more mixed: other post-viral infections such as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) can be lifelong.

Spicer cites two cornerstones to her recovery: rest and pacing. Not the type of rest we all do, but “radical rest”.

She spent the first six months at home, watching TV, unable to do anything else. “That does not really rest you cognitively and emotionally,” she says. She learned she had to turn off the TV, lower light and sound – “cut the over stimulation” of her nervous system. She meditated regularly.

And she paced herself. This approach, strongly advocated by the ME/CFS community, involves very, very slow progress towards full function. A bit of work, and then five minutes of meditation, over and over again.

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Spicer led a busy life before long COVID. One of the hardest things, she says, was learning to slow down, to accept that she would need a break in the middle of cooking vegetables for lunch. “It’s almost impossible,” she says. “You have to treat it like a job.”

Like many with long COVID, she – in close consultation with her doctors – experimented with a variety of medications before settling on a regime that worked for her.

There is no silver bullet, she says. She thinks they worked for her, but likely wouldn’t for many others, such is the range of presentations from the disease.

Regular readers of Examine might ponder why I’m focusing so much on Spicer’s story. Her experience is a single data point, not a robust clinical trial. What happened to her might not happen to others. And she doesn’t know for sure if it truly was the treatments that cured her. “Honestly, like most post-viral illness, the most powerful medicine is simply time,” she says.

Anecdotes are so persuasive they tend to influence our decision making in unhelpful ways. Normally, I am deeply sceptical of them and I encourage you to be as well.

Why make an exception? Two reasons: first, people with long COVID need stories of hope.

Second, long COVID is unusual because we’re dealing with a disease without a lot of medical literature. Our failure to properly fund post-viral illness research and care has left a huge vacuum.

This means much of the expertise in caring for people with long COVID has accrued among sufferers themselves and those living with post-viral illnesses. Indeed, patient-researchers just published a huge review of long COVID in Nature Microbiology.

Given the treatment and evidence vacuum, to ignore this type of first-hand knowledge seems wrongheaded.

Of course, advocates and scientists wisely caution that people should run everything past their doctors first, as there are horror stories about those who made themselves worse by relying on unproven information.

So what’s next for Spicer? I ask, and she laughs: she’s not yet sure what to do with her newfound energy, but she hopes to continue to campaign for more attention to be paid to long COVID and other post-viral illnesses.

“Honestly, governments have let us down,” she says. “They feel like they simply cannot afford to admit how big long COVID is, or the health system will buckle.”

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