Patients with Q fever fatigue syndrome (QVS) still suffer from symptoms years after being infected. This is evident from research by the Erasmus Medical Center. More than half of the Q fever patients who took part in the study rate their lives as an unsatisfactory (5.0), 15 years after the first Q fever outbreak.
The Erasmus MC in Rotterdam, commissioned by Q-support, the interest group for Q fever patients in Den Bosch, examines the complaints of almost 450 patients with QVS every four years. The first results that will be released on Saturday show that many patients still face major problems.
And that while the largest Q fever outbreak in the world was about fifteen years ago. In the East Brabant village of Herpen, between 50,000 and 100,000 people contracted the animal bacteria between 2007 and 2010. Researchers compare QVS with lung covid because both diseases involve long-term complaints. They also have in common that the disease spread from animals to humans. Previous research has already shown that 21 patients have died from the bacteria since 2018.
Working less or not working
The research shows that to this day QVS patients have twelve different health complaints. The three most common are fatigue, difficulty concentrating and physical exhaustion. “But we also see complaints such as insomnia and mental complaints in patients,” says Erasmus MC researcher Inge Spronk.
As a result, less than half of the patients have stopped working. A third of those surveyed have reduced their working hours as a result of QVS. The social life of many patients has come to a standstill due to extreme fatigue. This leaves little energy for family, friends and hobbies.
Where the average Dutch person values life with an 8.2, people with QVS give their life a 5.0. In general, patients have little confidence that the complaints will go away over time, only 17% expect this.
“What we do see is that, over time, patients learn to deal with QVS and think in terms of possibilities. That is easier with older patients than with younger patients,” says Spronk.
Care not properly aligned
The study also provides a picture of the care that patients receive and what they think about it. A third of the respondents are dissatisfied with the care they receive.
A much larger part (75%) believes that healthcare providers can better coordinate their treatment because they often suffer from different types of complaints. For half of the patients it is not even clear where they can go with complaints.
ALSO READ: Years after the outbreak, people are still dying from Q fever