Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

We’re all in this for good.

By sharing your stories and data, you will:
  • help each other live better and uncover the best ways to manage your health today
  • help researchers shorten the path to new treatments tomorrow

How much good can your data do? A whole lot, as co-founder Jamie Heywood explains in this video.

What is Myalgic Encephalomyelitis/Chronic Fatigue Syndrome?

Chronic Fatigue Syndrome which may also be known as Myalgic Encephalomyelitis (ME) is characterized by persistent or recurrent fatigue, diffuse musculoskeletal pain, sleep disturbances, and subjective cognitive impairment of 6 months duration or longer.

What is it like to have Myalgic Encephalomyelitis/Chronic Fatigue Syndrome?

Common symptoms
How bad it is
What people are taking for it

What do patients take to treat Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and its symptoms?

Treatments reported by members
Perceived effectiveness
Overall rating of side effects
# of Evaluations

These charts show data from ME/CFS patients’ latest treatment evaluations
Last updated:

  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

Who has Myalgic Encephalomyelitis/Chronic Fatigue Syndrome on PatientsLikeMe?

  • 11,045patients have this condition
  • 22new patients joined this month
  • 2,706say ME/CFS is their primary condition

Age Proportion # of patients
<20 71
20s 556
30s 1,622
40s 3,002
50s 3,122
60s 1,385
70+ 214


Distribution of females vs. males

91% Females
9% Males
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 758
20-29 years 1,020
30-39 years 1,180
40-49 years 919
50-59 years 325
60-69 years 36
70+ years 6

Condition Types Proportion # of patients
Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) 65
Chronic Fatigue Syndrome (CFS) 171
Myalgic Encephalomyelitis (ME) 108
Neuroendocrine Immune Disorder 15
Post-Viral Fatigue Syndrome (PVFS) 30
Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 5,659
Not Diagnosed 3,735

These charts show data from ME/CFS patients who have completed their condition history
Last updated: