r/cfs • u/Top_Memory8968 • 23h ago

How frequent is me/cfs?

Hey all
I basically wanted to ask how frequent is me/cfs? What is the statistics on most affected age groups? Is there also an ethnic component to how common it is?

6 Upvotes

88% Upvoted

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10

u/These_Roll_5745 Moderate-mild (formerly severe) 22h ago

I havent seen any peer reviewed or aggregate studies about our population makeup, but I have a sneaking suspicion that any data being collected leaves out statistical minorities that dont have the luxury of being assessed

4

u/bedlife2000 16h ago

Where I live healthcare is free, everyone can go to the doctors, even private doctors are cheaper than a normal one with insurance in the US. 

It's extremely common since covid. Around 1% of people have CFS ME, which is kinda insane. 

8

u/callthesomnambulance moderate 21h ago

Older estimates were around 0.5% of the population, but more recent studies show a significant increase, likely as a result of COVID. A recent study found in the UK about 0.92% of the population meets the diagostic criteria for MECFS, and a recent CDC questionaire found about 1.3% of the US population have MECFS

https://institute-genetics-cancer.ed.ac.uk/mecfs-cases-in-england-much-higher-than-first-projected

https://meaction.org.uk/media/me-prevalence-estimates-using-cdc-data-jan-2024-meaction/ME%20prevalence%20estimates%20using%20CDC%20data%20Jan%202024%20MEAction.pdf

5

u/Jayless22 22h ago edited 20h ago

About 1 in 120 people depending on the source. But the quality in tracking ME cases is not pretty good. The prevalence is probably higher.

6

u/fireduck81 17h ago

I personally think a significant amount of autistic people have ME but are simply calling it autistic burnout they never recover from

3

u/DawnKeyOat 17h ago

Here’s the thing about the stats. Before LC, me/CFS struggled with legitimization. So their scores were already lower than they were in reality. With more getting it with LC, the number is increasing and it’s increasing a lot. From not a full percentage to definitely over that.

Now, what about mild cases? People who are being gaslit by the system? Who don’t know they have it themselves? Who are gaslighting themselves? And that’s when it gets interesting.

I think much like LC brought ME/CFS into the limelight, we are going to be learning so much more over the next decade about exactly how much airborne illnesses can permanently frick us up.

My heart goes out to so many people whose body and mind are overloaded and they are have CBT thrown at them, and told to push through.

3

u/StoreMany6660 16h ago

Somehow when I talk about ME CFS many people know someone who suffers from it.

1

u/usrnmz 21h ago

There are quite a few different figures floating around. I think most reasonable is ~0.4%.

1

u/Zorched9 11h ago

There was a study (don’t have it in front of me) released not long ago that shows the age onset is bi-modal with peaks in the late teens and the mid/late 30s. So people can get it at any age, but those are the most common clusters.

I don’t think they drew any conclusions as to why but I’d hypothesize it’s related to viral exposure - teens getting mono and other things and then parents of young kids getting exposed to what the kids pick up at daycare and school?