The Dutch Health Council has urged the ministry of health, welfare and sport to increase clarity around long Covid. Although estimates vary of how many people suffer from it, the council puts it at 400,000 people nationwide, many of whom have severe symptoms.
Whether treatment for people suffering from long Covid should be included in the regular healthcare system remains a question of national debate.
For the patients, long Covid symptoms can include fatigue, sleep problems, shortness of breath and so-called brain fog.
The lingering effects, said the council, have a big impact on people’s lives. Recognising them as such means sufferers’ complaints will be taken more seriously.
“The loneliness and the lack of recognition have been the most difficult part,” said 49-year-old Marie-Charlotte Pezé, who, along with her young daughter, contracted Covid during its first wave in March 2020.
They then developed long Covid symptoms a few weeks later. The complaints were mainly neurological, a long list that included more common symptoms like chronic fatigue syndrome, PEM (Post-Exertional Malaise), POTS (a nervous system disorder manifesting in an increased heart rate or dizziness when going from lying to standing up), brain fog and neuropathic pains.
Speaking to DutchNews, Pezé also described “weirder ones such as anhedonia, palsy, paraesthesia and difficulty urinating.”
But with each vaccine and new infection and flu, her symptoms worsened. After coming down with the flu this January, Pezé got post-viral pericarditis (inflammation of the heart wall) and now suffers from derealisation, a dissociative symptom where the outside world feels dreamlike or distorted.
“Because long Covid prevents my immune system from doing its job, the pericarditis has not entirely gone away, and I had to stop all physical activity,” she said. “The derealisation makes me feel like a computer that has to lower its resolution while it buffers, even when I’m just out having coffee with a friend. It’s a fucking nightmare.”
Pezé is currently on indefinite sick leave and moving towards disability. “It’s so damn awful,” she said. “I was always very active, physically and intellectually, and I love to work. But it’s not possible right now, and I don’t know if it will be again. Career, interrupted.”
The recommendations
While Pezé is all in favour of pouring more funding into research, diagnosis and treatment for the “legions” of people who have chronic diseases and “suffer without any relief,” she says it’s more urgent to fund training for family doctors and create long Covid specialists.
“My ex-GP was an ignoramus who refused to believe long Covid existed and made my life hell for six years by treating every symptom (including my pericarditis) as if I was a hypochondriac,” she says. “I felt so utterly dismissed and abandoned. I carry trauma from that more than anything. It is absolutely awful not to be taken seriously.”
Pezé says she built up her resistance on her own via “enormous effort”, including changing her diet, practicing yoga and meditation and avoiding stress. She only takes medication now for her heart problem, but with new symptoms cropping up since the flu and her pericarditis, she would like to finally be referred to a long Covid specialist, “if such a thing exists in the Netherlands”, she says.
Pezé’s list of symptoms is so complex and baffling that her new GP, while more open-minded than the previous one, is stumped on how to proceed. Pezé is nervous about not being taken seriously again.
About face
The new recommendations into understanding chronic post-acute infection syndromes (PAIS), of which long Covid is one, marks a U-turn from the past two years of government policy.
Broadcaster NOS reported that health minister Sophie Hermans believes the regular healthcare system should be responsible for long Covid patients. But the Dutch Health Council says “the estimated large numbers of people with long COVID and other PAIS cannot simply be absorbed into regular care.”
The ministry says it is studying the council’s advice.
For Pezé, life with her daughter goes on. “I power through all this, I focus on having a good, peaceful, happy life,” she said. “But when I start thinking about what medical professionals have put me through for the past six years, I usually cry.”
“So, yeah, guys, whenever you want to try and find us treatments, it will be appreciated! So many goddamn lives ruined and wasted to this virus and others.”
