Denmark’s long COVID patients feel abandoned by pandemic response

When Pia Krabbe Larsson acquired sick within the early days of the COVID-19 pandemic, it felt like a foul flu, however she was again at work 10 days later. Then the complications began, adopted by crushing fatigue.

By July 2020, Larsson was successfully bedridden and took a depart of absence from her job as a house nurse in Farum, Denmark. She by no means went again.

After visiting a number of docs, Larsson, 44, was finally identified with myalgic encephalomyelitis/persistent fatigue syndrome (ME/CFS), a critical postviral situation that impacts the nervous system and has been linked by some researchers to lengthy COVID.

“It’s a troublesome time,” mentioned Thomas Clifford Larsson, Pia’s husband. “However she’s my spouse [and] we’re household. And also you do issues for household you’ll not do for another folks.”

The Larssons are removed from alone. The Institute for Well being Metrics and Analysis estimates that as of 2021, about 29,940 Danes had developed lengthy COVID lasting at the very least three months – and as 2022 involves an in depth, the toll is probably going even larger.

That’s regardless of a typically lauded pandemic response.

In September 2021, Denmark turned the primary European Union nation to elevate all COVID-19 restrictions, citing its excessive vaccination charge and compliance with public well being steerage.

Authorities briefly reinstated some measures throughout the Omicron-driven surge in early 2022 and launched a fall booster jab marketing campaign in September for high-risk Danes forward of an anticipated winter wave.

However now, as many of the nation strikes on from the pandemic, Danes with lengthy COVID, or “senfølger,” say they really feel left behind.

“Many people are simply bored with lengthy COVID not being recognised by the well being system in Denmark,” mentioned Katja Pedersen, one other one who has been coping with long-term signs after COVID-19 however who has struggled to get a prognosis.

“We expertise that there’s no assist to get from the docs or our well being system, so there may be not a lot combating spirit left.”

Lengthy COVID is a nebulous illness that may current with a spread of signs.

Analysis printed this summer time in Nature Communicationsdiscovered that even amongst non-hospitalised COVID-19 sufferers in Denmark, a “appreciable proportion” had lingering signs as much as a 12 months later, together with bodily and psychological exhaustion, issue concentrating, reminiscence issues and bother sleeping.

Denmark has arrange a handful of specialized clinics for sufferers with lengthy COVID.

Early on, they centered on creating referral tips for docs and hospitals the place these sufferers had been more likely to present up, mentioned Dr Jane Agergaard, who treats lengthy COVID sufferers as an affiliate infectious illnesses professor at Aarhus College Hospital.

“Now we have numerous sufferers nonetheless,” mentioned Agergaard. “The factor is, it is very tough to have a illness that you simply’re not in a position to diagnose with sure medical assessments.”

A number of sufferers mentioned they’ve struggled to get an official prognosis and remedy. Dorthe Witzell, 57, mentioned she’s been grappling with mind fog, ache and fatigue since getting COVID-19 in December 2020.

“I’ve seen a really nice variation of how the system has been working,” Witzell mentioned. “However the end result is identical: They don’t have any solutions.”

The coverage response to any well being disaster requires trade-offs.

All through the pandemic, Danes have been extra involved with the system-level dangers of COVID-19, such because the potential that hospitals may change into overwhelmed, than their particular person danger of getting sick, polling shows.

This spring, 50% of Danish adults mentioned they had been involved about lengthy COVID’s dangers, based on Michael Bang Petersen, a political scientist at Aarhus College who suggested the federal government’s pandemic response.

He mentioned it’s exhausting to say whether or not that share could be larger if authorities had publicly emphasised lengthy COVID extra – or if the authorities would prioritise lengthy COVID extra if Danes had been extra anxious.

“There may be alignment between the response and the perceptions of the vast majority of Danes,” Petersen mentioned.

The query now could be whether or not the Omicron variant, which led to Denmark’s greatest COVID-19 wave but final winter and any rising variants will result in a rise in lengthy COVID sufferers – and if that’s the case, how extreme their signs will probably be.

In letting Omicron rip, Danish authorities assumed that as a result of the variant typically precipitated milder sicknesses, the following burden of lengthy COVID would even be smaller. A preprint examine from the Statens Serum Institut signifies that the wager has paid off, with a decrease danger of lingering signs related to Omicron than the Delta variant.

However fewer lengthy COVID sufferers doesn’t imply zero, mentioned Anders Hviid, appearing head of SSI’s epidemiology division and the examine’s lead researcher.

“There nonetheless are extra signs than you’d anticipate, months after you’ve got been contaminated.”

In all, lengthy COVID sufferers mentioned the shortage of communication from the highest has hampered their capacity to make their struggles identified to the Danish public and to push for higher remedy.

They mentioned they need worldwide analysis on lengthy COVID to be shared extra extensively, for docs to study extra about signs and rising therapies and for extra assist from their workplaces.

“I need corporations to be extra conscious of what we’re truly coping with,” mentioned Eva Schomacker Munnecke, 54, an workplace supervisor who’s struggled to work full-time since growing lengthy COVID. “It is exhausting to be the one to have to elucidate this unexplainable factor.”

The difficulty isn’t going away anytime quickly. The World Well being Group is urging European nations to take lengthy COVID significantly, given its anticipated toll on international well being and economics within the years to return.

“We’re saying, dangle on a minute, this isn’t completed but, we have nonetheless acquired hundreds of thousands of people who find themselves probably struggling for a protracted time period,” mentioned Catherine Smallwood, senior emergency officer for the WHO’s European area.

In Denmark and all over the world, lengthy COVID sufferers will probably be ready. They don’t have any different selection.

“When an individual dies, you will have a interval of disappointment it’s a must to undergo to simply accept the scenario that by no means will be the identical,” Witzell mentioned. She sees parallels with lengthy COVID: “It is not a illness that kills you, however it takes your life away.”