If you stupidly and unnecessarily contracted the COVID-19 related illness, because you stupidly refused to wear protective gear or isolate yourself and because you wanted to stupidly ‘get on with your life’ as though nothing was happening (or you stupidly allowed someone else with the same attitudes to infect you), or, like the doctors in the story below, you were obliged to bravely tend to others with the illness and subsequently fell under its terror yourself, there is a strong possibility that you will suffer the consequences of your stupid (or brave) actions for the rest of your very likely curtailed life. You have only yourself and your stubborn stupidity or perhaps your unwarranted commitment of loyalty to your profession, to blame for your condition. I have no sympathy for you whatsoever.
Me? I have not, for the most part, left my home (where I live alone) for the past six months or more, for longer than an hour a week and only to do basic shopping at a place not frequented by the masses. I am prepared to continue doing that for as long as it takes, because I know that if I ever (at my age) contract the disease, I am a goner.
This story, shared in full below, if it is not too late for you, may encourage some to take this matter more seriously. (If you want images, you need to check out the link to the original story)
“COVID-19 effects can be persistent and serious say doctors suffering ‘long COVID'” – Australia’s ABC News, by Natasha Mitchell for Science Friction (an ABC Radio National program), published 23 October, 2020.
Nathalie MacDermott is no stranger to deadly diseases.
She’s worked on the front line of the Ebola epidemic in Liberia, Cholera in Haiti, and this year, treating children critically ill with COVID-19 in London.
But now she’s fighting on a more personal front line.
Dr MacDermott is suffering serious, ongoing symptoms after contracting COVID-19 back in March.
When her feet went numb while driving, she knew something was seriously wrong.
Then came the searing pain in her back, radiating down her arms and legs, when she walked up stairs.
“I am no longer able to walk more than a few hundred metres. My legs just aren’t strong enough.”
“The further I try to go, the more that my feet start to kind of scuff and drag along the ground,” the paediatric infectious diseases physician says.
Dr MacDermott had an MRI scan which appeared normal but is still undergoing tests. She and her doctors suspect coronavirus — or inflammatory processes triggered by the virus — have attacked her nerve cells and affected the function of her spinal cord.
Push to #CountLongCOVID
Dr MacDermott is one of a growing number of previously healthy people who identify as having ‘long COVID’, a bewildering array of symptoms that continue months after the initial, acute signs of infection.
“The concept of long COVID has been dismissed … even in the medical sphere,” she says.
But now Dr MacDermott is part of a group of UK doctors affected by persistent symptoms of suspected or confirmed COVID-19, who are calling for more research, better monitoring, and medical support.
They’ve joined a growing chorus on social media and in online support groups campaigning for health authorities to #CountLongCovid, and to take the plight of self-described #LongHaulers seriously.
Dr Amy Small was a committed runner and a picture of good health before long COVID struck her.
“I have seen too many cases of people not being listened to, and their symptoms and concerns not being validated,” Amy Small, a 39-year-old GP in Edinburgh who has been struggling with COVID-19 symptoms since April, says.
“I’ve seen heartbreaking stories of people losing their jobs.”
One estimate suggests more than 10 to 20 per cent of people infected with coronavirus have ongoing symptoms in subsequent months — according to data collected by the COVID Symptom Study app in the UK.
“Anyone, it seems, can potentially get ongoing long COVID symptoms,” Dr MacDermott says.
Overlap with chronic fatigue syndrome
Striking parallels are emerging with another disabling condition, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), which has similar symptoms, and also receives a mixed response from the medical profession.
ME/CFS is a chronic and relapsing condition which can occur after a viral infection. The illness is characterised by extremely debilitating fatigue, “brain fog”, muscle aches and pains, memory problems, headaches, and unrestful sleep.
There is some crossover too with another condition called fibromyalgia, in which people experience ongoing musculoskeletal pain all over their body.
As a patient himself now Dr Ian Frayling hopes to help research into long COVID.
Those suffering with long COVID also speak of crushing fatigue, brain fog, and muscle aches and pains.
“You struggle to even think about thinking about something,” Ian Frayling, a genetic pathologist and medical practitioner in Wales who contracted COVID-19 in March, says.
“[It was] the worst five or six days of my life. There was this cough that was like no other.”
Dr Frayling describes the months since as like living with a “cyclical chronic fatigue syndrome”.
Some days he feels okay, but then he crashes. He struggles with language, breathlessness, disrupted sleep, tachycardia (excessive heartbeat), and a debilitating exhaustion.
“I could be desperately short of breath…just packing bags in the supermarket, for heaven’s sake.”
The symptoms can flip from hour to hour.
Long COVID research could help those with ME/CFS
Dr Small said many in the ME/CFS community are connecting with her on Twitter, hopeful that any research done on long COVID may also help them.
“They have been gaslighted by medics for a long time [and] told that their symptoms are psychological,” she says.
“Chronic fatigue syndrome and all of the related syndromes that go alongside that population have been deeply let down by medicine.
“[But some with ME/CFS ask] ‘why are you so special with your long COVID when we’ve had this for years and no one’s believed us?’.
“I think we have so much to learn from each other, and a lot to gain from working together.”
Difficult to diagnose
As with ME/CFS and fibromyalgia, long COVID is proving difficult to diagnose because of the confusing range of symptoms.
In April, Dr Small experienced the classic symptoms of COVID-19 — fever, extreme breathlessness and falling oxygen levels, a splitting headache, body aches, and then a persistent cough.
Her husband and 2 small children experienced COVID-19 symptoms too. But in the six months since, Dr Small is still experiencing recurrent fever, elevated temperatures, dizziness, and other perplexing symptoms.
When she tried to go back to work at her Edinburgh clinic in June, she got a shock.
“I was feeling a bit better physically … [but] … that afternoon I started to feel a fatigue that I’ve never experienced. Just doing a half day’s work using my brain left me bed-bound for about 10 days.”
These doctors got coronavirus, now they’re battling ‘Long COVID’
“My speech was slurring. I couldn’t find my words. I had a day when I couldn’t speak.”
“It is a really terrifying experience.”
New symptoms continue to keep surprising Dr Small. In August, she suddenly lost her sense of smell.
“I don’t understand how it’s affecting our bodies.”
Like others, Dr Small wonders whether her immune system has been triggered to respond as if she still has the active coronavirus.
“This is something that just needs so much more research and investment,” she says.
Dr MacDermott agrees.
“The medical profession has an inclination, when it can’t explain something, or when initial basic tests appear normal, [to] dismiss things as being anxiety related or psychosomatic.”
Research needed to make sense of long COVID mystery
Long COVID doesn’t appear to discriminate by age or health status — even those who experienced mild or asymptomatic COVID initially are reporting prolonged symptoms.
“We’re now discovering that many … actually have got evidence of underlying organ damage secondary to COVID that’s only now being picked up,” Dr MacDermott says.
“It simply wasn’t possible to be seen in an outpatient department until fairly recently.”
If people had mild symptoms of infection the message early in the pandemic was to isolate and recover at home.
“Those who weren’t hospitalised with the illness were just sort of left to get to get on with it,” Dr MacDermott says.
This has meant many have suffered in isolation. Others have banded together in their thousands online to drive a patient-led movement calling for their symptoms to be taken seriously by medicine.
There is now mounting interest in their plight.
For example, the UK’s National Institute for Health Research is using patient testimonies to investigate long COVID. One suggestion is the condition could in fact be multiple syndromes, including post-intensive care syndrome and post-viral fatigue syndrome.
“Given the volume of people affected by long COVID in a short space of time, and the likely link to an infection with COVID at some stage, I hope that means it’s much harder to dismiss this,” Dr MacDermott says.
Dr Frayling is struggling to understand his symptoms, but he feels like he has got off relatively lightly compared to others he’s heard about.
“Their breathing [is] affected in a much more serious manner. They have permanent changes to their lungs. Some people have permanent changes to the conduction pathways in their hearts,” he says.
“There’s all sorts of other things going on.”
The respiratory system, heart and cardiovascular system, the brain and nervous system, the kidneys, and the gut all appear to be affected differently in different people.
“We need to realise it’s a spectrum of disease, and it is also a multi-system disease,” Dr MacDermott says.
Avoiding a second pandemic
There are other signs that people with long COVID are being listened to.
The National Health Service in England has set up a new Long COVID taskforce and announced that specialist clinics will be available to people with ongoing health problems from coronavirus, including those who weren’t hospitalised or didn’t receive a positive COVID test but who meet the clinical case definition for infection.
Dr Frayling is concerned about a second pandemic — of long COVID — one that is silent, disabling, and difficult to diagnose.
“In terms of the total health burden, that will way exceed whatever acute COVID did to us by the time a vaccine comes on.”
Dr Small, active in the British Medical Association and the busy mother of two, is worried about whether she’ll be able to continue working as a busy GP.
“I worry about the future. I worry about the impact on every aspect of my life,” she says.
“It’s absolutely heartbreaking to see a four-year-old look at his mum and think, ‘oh, I must help Mommy’.”
It’s changed the way she sees her role as a doctor too.
“As a GP prior to all of this, I was pretty sceptical of things.
“I certainly had sympathy for conditions like fibromyalgia, but I didn’t have the empathy that I have now. I didn’t understand it. I really didn’t get it.
“If I could go back and speak to myself as a GP prior to all of this, I would have been a much better doctor then, and I will hopefully be a much better doctor now.”
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