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?

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

Common symptoms reported by people with myalgic encephalomyelitis/chronic fatigue syndrome

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

Reports may be affected by other conditions and/or medication side effects. We ask about general symptoms (anxious mood, depressed mood, fatigue, pain, and stress) regardless of condition.
Last updated:

Treatments taken by people for myalgic encephalomyelitis/chronic fatigue syndrome

Treatment name(s)
Type
How many have tried
Tried for
Treatment name(s)

(Lyrica)
Type
Prescription Drug
How many have tried
5201
Treatment name(s)

(Cymbalta)
Type
Prescription Drug
How many have tried
6129
Treatment name(s)

(Low Dose Naltrexone (LDN))
Type
Prescription Drug
How many have tried
42

Data from patients with myalgic encephalomyelitis/chronic fatigue syndrome, who have ever reported treatments, ordered by their reporting frequency during the last 5 years.
Last updated:

Compare treatments taken by people with myalgic encephalomyelitis/chronic fatigue syndrome

Treatment name(s)
Perceived effectiveness
Side effects
Total evaluations
Tried for
Treatment name(s)

(Lyrica)
Perceived effectiveness
for myalgic encephalomyelitis/chronic fatigue syndrome (17 evaluations)
Side effects
agitation with restlessness anxious mood 24 more
Total evaluations
23
Treatment name(s)

(Cymbalta)
Perceived effectiveness
for myalgic encephalomyelitis/chronic fatigue syndrome (5 evaluations)
Side effects
headaches weight gain 54 more
Total evaluations
14
Treatment name(s)

(Low Dose Naltrexone (LDN))
Perceived effectiveness
for myalgic encephalomyelitis/chronic fatigue syndrome (5 evaluations)
Side effects
emotional distress insomnia 1 more
Total evaluations
5
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

Data from patients with myalgic encephalomyelitis/chronic fatigue syndrome, who have ever reported treatments, ordered by their reporting frequency during the last 5 years.
Last updated:

Who has myalgic encephalomyelitis/chronic fatigue syndrome on PatientsLikeMe?

  • 17 new patients joined this month
  • 4191 say ME/CFS is their primary condition

Age
Age Proportion # of patients
<20 20
20s 432
30s 1647
40s 4056
50s 6241
60s 4490
70+ 1332
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 1103
20-29 years 1476
30-39 years 1844
40-49 years 1425
50-59 years 512
60-69 years 68
70+ years 8

Distribution of sex

Sex
Sex Proportion # of patients
Male 1516
Female 16825

Types
Condition Types Proportion # of patients
Chronic fatigue immune dysfunction syndrome (CFIDS) 646
Chronic fatigue syndrome (CFS) 2021
Myalgic encephalomyelitis (ME) 1032
Neuroendocrine immune disorder 165
Post-viral fatigue syndrome (PVFS) 351
Systemic exertion intolerance disease (SEID) 50
Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 8442
Not Diagnosed 3848

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