For some sufferers, Covid-19 doesn’t come with an end-by date – it just goes on and on

New Statesman, Dr Phil Whitaker, 08 July 2020.

For #LongCovid sufferers – around 5 per cent of those who catch the disease – debilitating symptoms drag on interminably.

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“Tantalisingly, what I hope will be an eventual research effort into #LongCovid patients may shed some light on other ill-understood conditions associated with a viral trigger, most notably chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME).”

Dr Phil Whitaker

Xanthe and her husband, Paulo, became unwell towards the end of March. Xanthe described classic Covid-19 symptoms: a horrible pressure on her chest, accompanied by a cough, burning pains and shortness of breath, all associated with diarrhoea and fatigue. Paulo’s picture, by contrast, was dominated by nausea, headache and debilitating muscle pain.

Even though their presentations were so different, I confidently diagnosed them both with Covid-19. Two people in the same household, simultaneously unwell at the height of the first wave, one of them with typical symptoms: what else could be going on? I told them to expect recovery within a few weeks.

That was more than 14 weeks ago. Time and again, Xanthe has reconsulted with persisting symptoms. We have had her into our isolation room for an ECG and blood tests, and twice I’ve referred her for review at our local Covid-19 hot hub. At no point has she been bad enough to require hospital care. But she continues to be unwell.

The peculiar thing is the pattern. She will get two or three days with no symptoms but then the exact same cluster recurs. And Paulo is experiencing the same: recurrences of his own symptom pattern, not always coincident with Xanthe’s but, like her, punctuated by periods of a few days where he feels quite well.

I have become like the proverbial cracked record. Yes, I am quite sure this is all to do with Covid-19. No, I don’t know when it is going to resolve – or, indeed, that it definitely will. All I can do is reassure them there is no suggestion of anything more serious going on.

And as more reports have emerged of the same disease pattern, and as sufferers have formed support groups on social media under the “LongCovid” hashtag, I have been able to point them towards information that corroborates their experiences.

This seems to have been sufficient for Paulo, but Xanthe has struggled with the uncertainty. And as the months have gone on, the swings between hope and despair have dragged her down.

She is scared coronavirus is damaging her heart, lungs and bowels in ways I have failed to pick up. She wants to believe my reassurances but she is aware that I simply cannot know what her outlook actually is – the curse of suffering from an entirely new disease.

Alternatively, she worries that what I have labelled Covid-19 might be some other condition entirely, and that valuable time is being lost.

False-negatives?

When NHS antibody tests came on-stream a few of weeks ago, I phoned Xanthe and Paulo. I thought if they both had laboratory confirmation that they’d had coronavirus, it might help Xanthe to contain her understandable anxieties. So it was a shock when they both came back negative.

I had to ring and explain that the diagnosis I had been confidently propounding for the past three months was now in serious doubt. The antibody test was being touted as virtually 100 per cent accurate. There could be the occasional false negative; but two in the same household?

I brought them both in for review, trying to work out what I’d been missing. I couldn’t find anything with either of them. We eventually speculated together as to whether this could represent a folie à deux – whether at the height of first-wave panic they had been experiencing physical symptoms of anxiety, which I’d mislabelled Covid-19, setting in train a shared delusion that they had both fallen foul of the virus.

Two days later, and much higher false-negative rates were being reported in real-world trials of the antibody test. Data emerged from China showing that in most patients, antibody levels plummeted to become undetectable over the first two to three months.

I phoned Xanthe and Paulo. Ignore what I said, I told them. We’re back to playing the waiting game.

Patterns of infection

Six months of this novel pathogen and we’re aware now of at least three distinct patterns:

  • There’s the asymptomatic or trivially unwell, who constitute the vast majority.
  • Then there are the gravely sick cohort – perhaps around 5 per cent of cases – their condition characterised by a hyperinflammatory immune response that proves fatal in so many, and leaves others disabled from lung, kidney, heart or neurological damage.
  • Finally, the #LongCovid sufferers like Xanthe and Paulo – around another 5 per cent of sufferers – who rarely require hospital care, yet whose debilitating symptoms drag on interminably.

One virus, three diseases. The explanation will lie with “host factors” – differences in immune function; susceptibility to infection of lungs and arteries affected by age or prior disease; genetic predispositions as well.

The asymptomatic/trivial group probably repel Covid-19 through subtypes of white blood cells that detect and destroy virally infected cells. Those cellular mechanisms weaken with age, and coronaviruses may have molecular tools to disable them further, in which case the immune system generates an antibody response.

The combined effect of weak cellular and strong antibody immunity seems to result in the hyperinflammatory syndrome of severe Covid. This is what the steroid dexamethasone has recently been shown to dampen dramatically, reducing mortality by a third in the most critically unwell patients.

As for #LongCovid sufferers like Xanthe and Paulo, it feels, intuitively, as though their immune response is at stalemate: neither clearing the virus nor being driven down the hyperinflammatory pathway. There are other possibilities, though, notably that the original infection has been cleared, but the immune response continues to be triggered by factors as yet unknown.

Tantalisingly, what I hope will be an eventual research effort into #LongCovid patients may shed some light on other ill-understood conditions associated with a viral trigger, most notably chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME).

  • Phil Whitaker is a GP and writes the New Statesman’s “Health Matters” column. His books include Chicken Unga Fever: Stories from the Medical Frontline (Salt)

The ME Association Covid-19 and ME/CFS Leaflets

The ME Association has published a range of FREE leaflets about Covid-19, including one that talks specifically about post-viral-fatigue syndrome and how this could lead to a marked increase in the diagnosis of ME/CFS.

You can download each one (or all of them) by clicking the images below, or you will find them in the ME Association Website Shop.

The General LeafletVulnerable Status LetterCovid-19 and PVFS
Reducing Risk InfectionChanges to BenefitsEmployment

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