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NORD and #RareDiseaseDay on Feb. 29, 2024 #ShowYourStripes

Hip

Senior Member
Messages
17,976
I don't think this will apply to ME/CFS, as this illness is a little too common, affecting about 1 in 500 (and since COVID its probably now affecting about 1 in 200). Whereas a rare disease is defined in Europe as affecting no more than 1 person in 2,000.
 

Cipher

Administrator
Messages
1,001
I don't think this will apply to ME/CFS, as this illness is a little too common, affecting about 1 in 500 (and since COVID its probably now affecting about 1 in 200). Whereas a rare disease is defined in Europe as affecting no more than 1 person in 2,000.

It might be even more common according to the latest numbers from the CDC (1 in 77):
  • In 2021–2022, 1.3% of adults had myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
NOTES: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome was based on a yes response to the following two survey questions, “Have you ever been told by a doctor or other health professional that you had Chronic Fatigue Syndrome (CFS) or Myalgic Encephalomyelitis (ME)?” and “Do you still have Chronic Fatigue Syndrome (CFS) or ME?” Confidence intervals were calculated using the Korn–Graubard method for complex surveys. Estimates are based on household interviews of a sample of the U.S. civilian noninstitutionalized population.
As the prevalence estimates in this report are based on a doctor’s diagnosis, adults who are undiagnosed are not included in this analysis. True prevalence estimates may be higher, as previous studies suggest that many people with ME/CFS are undiagnosed (1).
https://www.cdc.gov/nchs/products/databriefs/db488.htm
 
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Faith2007

Senior Member
Messages
122
Location
Montana, USA
Thanks for the statistics you two. I read this before posting https://www.rarediseaseday.org/hero...nd-widely-misunderstood-neurological-disease/ I had never heard of my illness before I got it, and have never spoken to anyone who knew what I was talking about when I told them what I had outside of disability sites or an ME/CFS doctor's office, except for a few people in the medical profession, though my health limits my activities outside of home. This is about getting more publicity and showing support for people with ME/CFS and rare diseases in general.
 
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