Estimated incidence of CFS/ME in Norway between 2016-2018, Hilland and Anthun, 2022

[Midnattsol]

Subtitle: "A register study"

Abstract (translated by me):
Chronic fatigue syndrome/myalgic encephalopathy (ME/CFS) is a complex and chronic illness that is associated with a considerable reduction in quality of life for patients. In this study we estimate the incidence rate of ME/CFS in the Norwegian population between 2016-2018.

Patient data has been collected from the Norwegian Patient Registry (NPR). The population is defined by all patients treated in the specialist health services diagnosed with ME/CFS between 2016-2018.

We find that 5556 new patients were diagnosed with ME/CFS in the period between 2016-2018. The incidence rate was 36.1 per 1000 000 person years. Of these, 4347 were women, which means that the incidence rate of women relative to men was 3.7. We find that the occurence of ME varies by age, and we find two age-tops in the groups 15-19 and 35-39 years old. We find a higher incidence for the total population, compared to earlier Norwegian research.

Edit: Forgot the link. The study is in Norwegian.
https://septentrio.uit.no/index.php/helseforsk/article/view/6535

 

[rvallee]

Seems unrealistic considering that most are never officially diagnosed. And in fact it's not just diagnosed, but seen in healthcare services:

The population is defined by all patients treated in the specialist healthcare service who have been diagnosed with ME/CFS between 2016-2018

That's still a lot of people, and likely an undercount. And that's not incidence, that's new incidence, among the small % who ever get diagnosed and seen somewhere where they actually record those cases. There go those twin peaks again, but it's impossible to trust the reliability of the data.

I don't think that the fact that this is constantly happening has really sunk in, there's always been this idea, dating back decades, that this is a fad and eventually the number of cases would drop down to zero. It's the inability to accept that this is caused by infections that breaks everything, a nearly identical conceptual error as the belief that bacteria can't survive stomach acid long enough to cause ulcers.

 

[Midnattsol]

I was diagnosed in 2017, but I was not in contact with specialist healthcare services due to ME then, as already by 2017 was that primary care should do the diagnosis. I don't remember when the rules changed (this is an issue because some pwME will get told by NAV/disability and welfare that their diagnosis from a GP is "not good enough" and to see a hospital doc, but the hospital denies access to such a doctor since "diagnosis was set according to official guidelines" already).

I'd have to read the study to see how this was accounted for, but a bit too tired.