ME/CFS

What research knows about ME/CFS comes from people who live with it. Here is how many do, what records they usually have, and what sharing yours is worth.

Living with it

0.89%

Prevalence of chronic fatigue syndrome/ME

source

New diagnoses

25.8 per 100,000 person years

Incidence of diagnosed CFS/ME in Norway, 2008 to 2012

source

How rare

Common

about 89 in 10,000 people

source source

What patients usually have

The records behind ME/CFS

Primary care review of care and support plan, adults
Doctor's letters
at least once a year
guideline
Review of care and support plan, children and young people
Doctor's letters
at least every 6 months
guideline
Exclusion blood tests (vitamin D, vitamin B12 and folate levels, 9am cortisol)
Lab results
as clinical judgement decides
guideline

What sharing it is worth

$74

per licence for a complete story and one year of these records, $74 to $871

Value your own data

Your health story$23how
Doctor's lettersx3$8.40how
Lab resultsx1$0.24how
Richness premium (3 kinds of data linked)x2.33how

A benchmark from published prices, not a promise: contributors earn a share each time a licence includes their data. How the benchmark works · What health data sells for

Share your story about ME/CFS All conditions

ME/CFS

What research knows about ME/CFS comes from people who live with it. Here is how many do, what records they usually have, and what sharing yours is worth.

Living with it

0.89%

Prevalence of chronic fatigue syndrome/ME

source

New diagnoses

25.8 per 100,000 person years

Incidence of diagnosed CFS/ME in Norway, 2008 to 2012

source

How rare

Common

about 89 in 10,000 people

source source

What patients usually have

The records behind ME/CFS

Primary care review of care and support plan, adults
Doctor's letters
at least once a year
guideline
Review of care and support plan, children and young people
Doctor's letters
at least every 6 months
guideline
Exclusion blood tests (vitamin D, vitamin B12 and folate levels, 9am cortisol)
Lab results
as clinical judgement decides
guideline

What sharing it is worth

$74

per licence for a complete story and one year of these records, $74 to $871

Value your own data

Your health story$23how
Doctor's lettersx3$8.40how
Lab resultsx1$0.24how
Richness premium (3 kinds of data linked)x2.33how

A benchmark from published prices, not a promise: contributors earn a share each time a licence includes their data. How the benchmark works · What health data sells for

Share your story about ME/CFS All conditions