Myalgic encephalomyelitis/chronic fatigue syndrome

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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, insomnia, fatigue, and pain) regardless of condition.
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Treatments taken by people with 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
148
Treatment name(s)

(Cymbalta)
Type
Prescription Drug
How many have tried
121
Treatment name(s)

(Elavil)
Type
Prescription Drug
How many have tried
74
Tried for
Pain (47) Insomnia (46)
4 more
Treatment name(s)

(Ultram)
Type
Prescription Drug
How many have tried
69
Tried for
Pain (60) Muscle pain (29)
1 more
Treatment name(s)

(Neurontin)
Type
Prescription Drug
How many have tried
59
Treatment name(s)

(Norco)
Type
Prescription Drug
How many have tried
35
Tried for
Pain (35) Headaches (1)
2 more
Treatment name(s)

(Desyrel)
Type
Prescription Drug
How many have tried
35
Tried for
Insomnia (30) Depressed mood (3)
3 more
Treatment name(s)

(Klonopin)
Type
Prescription Drug
How many have tried
34
Tried for
Anxious mood (33) Insomnia (3)
1 more
Treatment name(s)

(Low Dose Naltrexone (LDN))
Type
Prescription Drug
How many have tried
28
Treatment name(s)

(Effexor XR)
Type
Prescription Drug
How many have tried
28
Tried for
Depressed mood (26) Pain (3)
3 more

Data from patients with myalgic encephalomyelitis/chronic fatigue syndrome, who reported starting treatments within the last 5 years.
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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 (59 evaluations)
Side effects
Weight gain Dizziness 90 more
Total evaluations
80
Treatment name(s)

(Cymbalta)
Perceived effectiveness
for myalgic encephalomyelitis/chronic fatigue syndrome (62 evaluations)
Side effects
Nausea Dizziness 81 more
Total evaluations
113
Treatment name(s)

(Elavil)
Perceived effectiveness
for Pain (55 evaluations)
Side effects
Drowsiness Dry mouth 36 more
Total evaluations
81
Tried for
Pain (47) Insomnia (46)
4 more
Treatment name(s)

(Ultram)
Perceived effectiveness
for Pain (30 evaluations)
Side effects
Dizziness Fatigue 15 more
Total evaluations
38
Tried for
Pain (59) Muscle pain (28)
1 more
Treatment name(s)

(Neurontin)
Perceived effectiveness
for Pain (40 evaluations)
Side effects
Weight gain Sleepiness 30 more
Total evaluations
49
Treatment name(s)

(Norco)
Perceived effectiveness
for Pain (11 evaluations)
Side effects
Abdominal bloating Abdominal cramps 9 more
Total evaluations
12
Tried for
Pain (35) Headaches (1)
2 more
Treatment name(s)

(Desyrel)
Perceived effectiveness
for Insomnia (10 evaluations)
Side effects
Affects memory Anxious mood 4 more
Total evaluations
13
Tried for
Insomnia (30) Depressed mood (3)
3 more
Treatment name(s)

(Klonopin)
Perceived effectiveness
for Anxious mood (9 evaluations)
Side effects
Loss of balance Apathy 6 more
Total evaluations
13
Tried for
Anxious mood (33) Insomnia (3)
1 more
Treatment name(s)

(Low Dose Naltrexone (LDN))
Perceived effectiveness
for Fatigue (14 evaluations)
Side effects
Dry mouth Vivid dreams 12 more
Total evaluations
29
Treatment name(s)

(Effexor XR)
Perceived effectiveness
for Depressed mood (19 evaluations)
Side effects
Anxious mood Dizziness 28 more
Total evaluations
22
Tried for
Depressed mood (26) Pain (3)
3 more
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

Data from patients with myalgic encephalomyelitis/chronic fatigue syndrome, who reported starting treatments within the last 5 years.
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Who has myalgic encephalomyelitis/chronic fatigue syndrome on PatientsLikeMe?


Age
Age Proportion # of patients
<20 44
20s 520
30s 1,566
40s 3,297
50s 3,816
60s 2,332
70+ 483
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 971
20-29 years 1,258
30-39 years 1,496
40-49 years 1,180
50-59 years 417
60-69 years 46
70+ years 7

Sex

Distribution of sex

90% Female
10% Male

Types
Condition Types Proportion # of patients
Chronic fatigue immune dysfunction syndrome (CFIDS) 527
Chronic fatigue syndrome (CFS) 1,653
Myalgic encephalomyelitis (ME) 826
Neuroendocrine immune disorder 144
Post-viral fatigue syndrome (PVFS) 290
Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 6,733
Not Diagnosed 3,850

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