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.

How do members experience myalgic encephalomyelitis/chronic fatigue syndrome?

Top 5 symptoms reported by people with myalgic encephalomyelitis/chronic fatigue syndrome*

*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.

Top treatments taken by people for myalgic encephalomyelitis/chronic fatigue syndrome*

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

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

Treatment
Perceived effectiveness
Side effects
Total evaluations
Tried for
Treatment

(Low Dose Naltrexone (LDN))
Perceived effectiveness
for myalgic encephalomyelitis/chronic fatigue syndrome (2 evaluations)
Side effects
Total evaluations
2
Tried for
myalgic encephalomyelitis/chronic fatigue syndrome (10)
Treatment

(Lyrica)
Perceived effectiveness
for myalgic encephalomyelitis/chronic fatigue syndrome (3 evaluations)
Side effects
Total evaluations
3
Tried for
myalgic encephalomyelitis/chronic fatigue syndrome (7)
Treatment

(Cymbalta)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
myalgic encephalomyelitis/chronic fatigue syndrome (1)

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

Who has myalgic encephalomyelitis/chronic fatigue syndrome on PatientsLikeMe?

Age

Age Proportion # of patients
<20 22
20s 281
30s 1,061
40s 2,944
50s 5,711
60s 5,952
70+ 3,006

Distribution of sex

Sex

Sex Proportion # of patients
Male 1,661
Female 17,376

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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
45
Treatment name(s)

(Lyrica)
Type
Prescription Drug
How many have tried
5,237
Treatment name(s)

(Cymbalta)
Type
Prescription Drug
How many have tried
6,162

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 (2 evaluations)
Side effects
Total evaluations
2
Treatment name(s)

(Lyrica)
Perceived effectiveness
for myalgic encephalomyelitis/chronic fatigue syndrome (3 evaluations)
Side effects
Total evaluations
3
Treatment name(s)

(Cymbalta)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
  • 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?

  • 12 new patients joined this month
  • 4,507 say ME/CFS is their primary condition

Age
Age Proportion # of patients
<20 22
20s 281
30s 1,061
40s 2,944
50s 5,711
60s 5,952
70+ 3,006
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 1,096
20-29 years 1,484
30-39 years 1,835
40-49 years 1,422
50-59 years 512
60-69 years 70
70+ years 9

Distribution of sex

Sex
Sex Proportion # of patients
Male 1,661
Female 17,376

Types
Condition Types Proportion # of patients
Chronic fatigue immune dysfunction syndrome (CFIDS) 665
Chronic fatigue syndrome (CFS) 2,090
Myalgic encephalomyelitis (ME) 1,071
Neuroendocrine immune disorder 170
Post-viral fatigue syndrome (PVFS) 367
Systemic exertion intolerance disease (SEID) 72
Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 8,441
Not Diagnosed 3,836

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