"The help we have provided to patients through the welfare and healthcare systems has had little rehabilitative effect," says a researcher.
The Norwegian Labour and Welfare Administration requires ME/CFS patients to go through work-oriented measures in order to be granted disability benefits, which is a challenge for many patients.(Photo: Gorm Kallestad / NTB)
In a debate article in the Norwegian newspaper Aftenposten, retired Statistics Norway researchers Bjørn K. Getz Wold and Helge Brunborg point out that an increase in diagnoses could lead to significant costs for society in the form of disability benefits and lost tax revenue.
"Disheartening results"
Annonse
Karl Johan Tronstad, a professor at the University of Bergen's Department of Biomedicine, has researched ME/CFS for several years. He believes the new study provides important insight into the prognosis of ME/CFS patients.
"They see that very few patients recovered enough to return to work, even nine years after diagnosis. These are disheartening results, but unfortunately not very surprising," he says.
Tronstad explains that ME/CFS symptoms range from mild to very severe and that they can fluctuate over time.
"As long as there's no effective treatment, many remain chronically ill. The study suggests that the help patients have received through the welfare and healthcare systems has had little rehabilitative effect," says Tronstad, adding:
"It's possible that better facilitation would have yielded somewhat more positive results, but we also need new forms of treatment."
In Bergen, research is currently being conducted on the possibility of reversing the disease mechanisms behind ME/CFS through targeted treatment, something Tronstad believes is possible.
Karl Johan Tronstad, a professor at the University of Bergen's Department of Biomedicine, fears that the help ME/CFS patients receive through the welfare and healthcare systems is insufficient.(Photo: Torstein Ravnskog / University of Bergen)
Should be interpreted with caution
In the study, the researchers point out that between 2009 and 2015, just over 3,500 cases were registered. This accounted for only around 40 per cent of the expected ME/CFS patients in health registries. In other words, the researchers lacked about 60 per cent of the estimated cases.
"This represents a weakness in the dataset, making the most long-term results require cautious interpretation. However, the short-term findings remain reliable," says Tronstad.
Based on available data and methodological assessments, Tronstad says that the researchers have conducted a thorough and responsible interpretation of the findings.
"They acknowledge the challenge of missing data, discuss potential biases, and justify why they believe their conclusions remain valid," he says.
The workforce is not adapted for ME/CFS patients
The Norwegian Welfare and Labour Administration (NAV) requires that ME/CFS patients undergo appropriate treatment and work-oriented measures in order to be granted disability benefits.
This can be a challenge for many patients, especially since the nature of the illness does not always allow participation in such programmes.
Annonse
"Many patient stories show that those who try to adapt to the job market often experience relapses. The workforce is largely not adapted for people with low and fluctuating work capacity," says Trude Schei, deputy secretary general of the Norwegian ME Association.
Trude Schei, deputy secretary general of the Norwegian ME Association, says that many ME/CFS patients experience not being believed.(Photo: Olav Osland)
As a volunteer in the ME Association, Schei has been able to adjust her work according to her own capacity. She believes that holding a regular job would have been impossible.
"There are days or even weeks when I can't do anything at all. Few employers will hire someone who disappears for long periods due to illness. That makes returning to work difficult, especially if one does not improve," she says.
Both researchers and patient organisations are calling for more research on ME/CFS. Trude Schei also believes greater investment is needed.
"We need more research to understand the disease mechanisms behind ME/CFS and to develop more targeted treatments. The healthcare system should listen more to patients," she says.
Annual cost of 71 million USD
To find answers to the ME/CFS puzzle, the ME Association is raising funds for research through the ME Fund, led by Bjørn K. Getz Wold.
"The research by Kielland and Liu has made it possible to calculate what ME/CFS costs society. These figures show how important it is to invest in research," Wold and Brunborg write in Aftenposten.
According to Wold and Brunborg's calculations, this could amount to an annual burden of NOK 750 million (71 million USD) on the state budget.
"We've not calculated costs in the same way Wold and Brunborg have," says Anne Kielland.
She is one of the Fafo researchers behind the new study.
"We can only acknowledge that our results were disheartening and indicated that the current policy measures for this group have not yielded significant improvements in their ability to regain income capacity," she says.
ME/CFS costs the Norwegian society 71 million USD a year, Bjørn K. Getz Wold and Helge Brunborg write in a debate article in Aftenposten.(Photo: Shutterstock / NTB)
Hope that new research will provide more insight
Karl Johan Tronstad says that ME/CFS has long been a controversial research field, with disagreements over treatment methods and causes.
"A key challenge has been the varying definitions of ME/CFS. Fortunately, leading health research institutions worldwide now agree on stricter diagnostic criteria, which helps create a more consistent and comparable patient group," says Tronstad.
He hopes that new research will offer deeper insight into the biological mechanisms of the disease and pave the way for effective medical treatments.
"Significant research efforts are underway both in Norway and internationally, which gives hope for better treatment options in the future," he says.
However, Fafo researcher Anne Kielland points out that until a truly effective treatment is found, public investments in ME/CFS patients should primarily focus on improving their quality of life.
"As Tronstad points out, there is also a need to explore entirely new treatment methods. Otherwise, the alternative could be very costly for society, as Wold and Brunborg's calculations show," she says.
