Severe ME CFS study Norway

Many ME/CFS patients are severely ill and receive inadequate support

Science Norway reports on a study of the effects of ME/CFS on those with more severe symptoms.


The results show that the survey participants had extensive, long-lasting and extremely disabling symptoms. The disease basically puts an end to all forms of normal life activities.

Many of the most seriously ill patients had developed ME/CFS before they turned 15, and many in both groups had been ill for a long time. The majority answered that the illness varied over time or became progressively worse. None of the very severely ill patients, and only a small percent of the severely ill, responded that their condition improved.

However, the survey cannot make conclusions about patients’ chance of improvement or full recovery. For example, it does not pick out ME patients who previously had severe ME but have now improved.

The data comes from an open user survey and therefore cannot provide us with any general information about how many people suffer from severe ME in Norway. Nor do the data tell us anything about whether the results are representative of all patients with severe ME.

Helland confirms that patients might be met by a healthcare system that does not understand their needs and rejects them.

“I think the patients are right in saying that they’re often not taken seriously,” she says.

“There’s still a lot of ignorance out there. The healthcare service is not adapted to patients in this group.”

The results indicate that the healthcare services offered to the participants in the survey were not sufficient. But they also suggest that there are good ways to improve the situation.

“It’s possible to create good arrangements and security for ill patients, but it will require municipalities and the healthcare system to be willing to listen and think in new ways,” writes Schei.

The Norwegian ME Association, which is behind the study, wants ME patients to have fewer and more regular helpers with knowledge of the disease, but also for public nursing home options to be created for the most severely ill.

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