Sky's technology correspondent Rowland Manthorpe has suffered with long COVID for more than 18 months, and documented his continued struggle.
To get one thing clear at the start: I've never done a triathlon. I've never climbed a mountain or swum the Channel. I've never been on a hiking holiday. Why am I telling you this? Because normally articles about long COVID start by describing the physical feats that sufferers are no longer able to perform.
Look, the writers say. Once, these people were so healthy they ran ultra-marathons in their spare time. Now they can barely make it to the shops. It's not wrong exactly, but to me it always struck a false note, because when long COVID is leeching my energy, it's not the big things I miss, it's everything else…
Extracts
When I tried to follow a graded exercise guide I found online – the GP just told me to do a bit more every day – it made me feel awful. Instead of building as I'd hoped, my strength was being sucked away. Many long COVID sufferers had similar complaints. Graded exercise therapy was, I learned, incredibly controversial among sufferers of post-viral fatigue, ME, chronic fatigue syndrome and other similar disorders, who believed it made it harder to recover. There was even a name for the way exertion made my symptoms worse: post-exertional malaise…
“I can't emphasise sufficiently how important rest is. Increasingly we're trying to get on with our lives, aren't we, and ignore COVID and ignore COVID infections and reinfections. And part and parcel of that is, oh, just ignore it and, you know, power through it. I can only say, as somebody who spent the last two years thinking about long COVID, that that's really the worst thing you could do.”
Danny Altmann, Professor of Immunology at Imperial College London
Abandoning graded exercise was relatively easy. The GP hadn't given me a schedule, so I didn't have anything to stick to, and after a while I simply gave up. Stopping other kinds of exertion was much harder…
Why weren't there more treatments for the clinics to offer?
When COVID-19 emerged in early 2020, it was an entirely new virus, yet within 12 months scientists had produced three extremely effective vaccines and discovered several excellent treatments. More than two years after patients first began drawing attention to it, there was nothing even remotely comparable for long COVID.
I found an answer when I spoke to Dr Charles Shepherd, honorary medical adviser to the ME Association. In the late 1970s, he was a fit young doctor in his early thirties working long days in Cirencester Hospital, when he caught chickenpox from a patient. The chickenpox went away, but Dr Shepherd never recovered. Instead, he was left with “activity induced fatigue, brain fog, problems with short term memory, concentration, attention span, processing information”, a condition eventually diagnosed as myalgic encephalomyelitis (ME)
The list of symptoms was all too familiar. Forty years apart, Dr Shepherd and I had been struck down by almost identical diseases, and – what was worse – been met with very similar responses. Dr Shepherd was a medical mystery. So was I. In the four decades between our collapses, almost no progress had been made on uncovering the nature of post-viral disease. The reason was not hard to find. “ME was regarded as hysterical nonsense by the medical profession,” said Dr Shepherd, recounting how he'd been ignored and dismissed by his fellow practitioners. Even when grudging acceptance came, it wasn't followed by funding for research.
Sky News analysis found that in the 20 years before the pandemic, there were just 2,007 new scientific publications on ME/CFS. Over the same period, by comparison, there were nearly 45,000 publications investigating the skin condition psoriasis and 114,000 on the topic of Parkinson's. Per sufferer, as the chart below shows, ME/CFS receives a fraction of the research of other similar conditions, despite evidence that it reduces quality of life by a greater amount.
I asked Dr Shepherd: if there'd been sufficient funding for ME/CFS, could we have a treatment for my kind of long COVID? “I think the answer is, yes we could,” he replied. “What we've had is a period of tremendous missed opportunity because of lack of interest, lack of funding.”
