A new Norwegian study shows that very few ME/CFS patients return to the workforce after being diagnosed. The findings have sparked debate among both researchers and patients about how ME/CFS is handled in the healthcare system and the workplace.
Emilie Wee, Science Norway
Summary
A new Norwegian study shows that very few ME/CFS patients return to the workforce after diagnosis, sparking debate over healthcare and workplace support.
Researchers found that between 2009-2015, only 40% of the expected ME/CFS cases were registered, with some missing data impacting long-term findings.
The Norwegian ME Association emphasises the need for more research, better treatments, and adaptations in the workforce to accommodate patients' fluctuating capacities.
Dr Charles Shepherd, Hon Medical Advisor MEA, notes that we will be bringing this research to the attention of the Department of Work and Pensions (DWP) amidst the current welfare reform in the UK.
A recent Norwegian study, published in Science Direct, looking at the impact ME/CFS has on individuals earnings was reported on by Science Norway on the 21st March 2025.
Extracts
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.
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.
Karl Johan Tronstad, a professor at the University of Bergen's Department of Biomedicine
Study Limitations
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.
Karl Johan Tronstad, a professor at the University of Bergen's Department of Biomedicine
The workforce is not adapted for ME/CFS patients
As a volunteer in the [Norwegian] 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.
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.
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.
Trude Schei, deputy secretary general of the Norwegian ME Association.
MEA Comment:
This research from Norway provides further confirmation that only a very small percentage of people with ME/CFS are able to continue or return to some form of meaningful employment.
We will be bringing this research to the attention of the DWP in relation to their plans for removal of the Work Capability Assessment probably making it even more difficult for people with ME/CFS to claim any form of long term sickness benefit.
Dr Charles Shepherd,
Trustee and Hon. Medical Adviser to the ME Association,
Member of the 2018-2021 NICE guideline on ME/CFS committee,
Member of the 2002 Chief Medical Officer's Working Group on ME/CFS
Charles Shepherd