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)

(Low Dose Naltrexone (LDN))
Type
Prescription Drug
How many have tried
43
Treatment name(s)

(Lyrica)
Type
Prescription Drug
How many have tried
5249

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)

(Low Dose Naltrexone (LDN))
Perceived effectiveness
for myalgic encephalomyelitis/chronic fatigue syndrome (5 evaluations)
Side effects
emotional distress insomnia 1 more
Total evaluations
5
Treatment name(s)

(Lyrica)
Perceived effectiveness
for myalgic encephalomyelitis/chronic fatigue syndrome (2 evaluations)
Side effects
headaches
Total evaluations
2
  • 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?

  • 16 new patients joined this month
  • 4288 say ME/CFS is their primary condition

Age
Age Proportion # of patients
<20 13
20s 325
30s 1283
40s 3471
50s 6128
60s 5218
70+ 1993
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 1097
20-29 years 1471
30-39 years 1836
40-49 years 1421
50-59 years 512
60-69 years 70
70+ years 8

Distribution of sex

Sex
Sex Proportion # of patients
Male 1559
Female 16995

Types
Condition Types Proportion # of patients
Chronic fatigue immune dysfunction syndrome (CFIDS) 666
Chronic fatigue syndrome (CFS) 2080
Myalgic encephalomyelitis (ME) 1069
Neuroendocrine immune disorder 171
Post-viral fatigue syndrome (PVFS) 364
Systemic exertion intolerance disease (SEID) 68
Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 8425
Not Diagnosed 3840

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