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
150
Treatment name(s)

(Cymbalta)
Type
Prescription Drug
How many have tried
123
Treatment name(s)

(Elavil)
Type
Prescription Drug
How many have tried
75
Tried for
Pain (48) Insomnia (47)
4 more
Treatment name(s)

(Ultram)
Type
Prescription Drug
How many have tried
70
Tried for
Pain (61) Muscle pain (30)
1 more
Treatment name(s)

(Neurontin)
Type
Prescription Drug
How many have tried
60
Treatment name(s)

(Desyrel)
Type
Prescription Drug
How many have tried
36
Tried for
Insomnia (31) 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)

(Norco)
Type
Prescription Drug
How many have tried
34
Tried for
Pain (34) Headaches (1)
2 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 (58 evaluations)
Side effects
Weight gain Dizziness 95 more
Total evaluations
80
Treatment name(s)

(Cymbalta)
Perceived effectiveness
for myalgic encephalomyelitis/chronic fatigue syndrome (62 evaluations)
Side effects
Nausea Weight gain 81 more
Total evaluations
112
Treatment name(s)

(Elavil)
Perceived effectiveness
for Pain (57 evaluations)
Side effects
Drowsiness Dry mouth 36 more
Total evaluations
83
Tried for
Pain (48) Insomnia (47)
4 more
Treatment name(s)

(Ultram)
Perceived effectiveness
for Pain (29 evaluations)
Side effects
Dizziness Fatigue 15 more
Total evaluations
37
Tried for
Pain (61) Muscle pain (30)
1 more
Treatment name(s)

(Neurontin)
Perceived effectiveness
for Pain (41 evaluations)
Side effects
Weight gain Sleepiness 32 more
Total evaluations
50
Treatment name(s)

(Desyrel)
Perceived effectiveness
for Insomnia (10 evaluations)
Side effects
Affects memory Anxious mood 4 more
Total evaluations
13
Tried for
Insomnia (31) Depressed mood (3)
3 more
Treatment name(s)

(Klonopin)
Perceived effectiveness
for Anxious mood (10 evaluations)
Side effects
Loss of balance Apathy 6 more
Total evaluations
14
Tried for
Anxious mood (33) Insomnia (3)
1 more
Treatment name(s)

(Norco)
Perceived effectiveness
for Pain (9 evaluations)
Side effects
Abdominal bloating Abdominal cramps 9 more
Total evaluations
10
Tried for
Pain (34) Headaches (1)
2 more
Treatment name(s)

(Low Dose Naltrexone (LDN))
Perceived effectiveness
for Fatigue (12 evaluations)
Side effects
Dry mouth Vivid dreams 12 more
Total evaluations
27
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 46
20s 520
30s 1,561
40s 3,293
50s 3,793
60s 2,310
70+ 479
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 968
20-29 years 1,254
30-39 years 1,488
40-49 years 1,168
50-59 years 412
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) 524
Chronic fatigue syndrome (CFS) 1,643
Myalgic encephalomyelitis (ME) 824
Neuroendocrine immune disorder 144
Post-viral fatigue syndrome (PVFS) 291
Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 6,706
Not Diagnosed 3,845

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