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, fatigue, pain, and stress) 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
138
Treatment name(s)

(Cymbalta)
Type
Prescription Drug
How many have tried
109
Treatment name(s)

(Ultram)
Type
Prescription Drug
How many have tried
61
Tried for
pain (53) muscle pain (27)
1 more
Treatment name(s)

(Neurontin)
Type
Prescription Drug
How many have tried
56
Treatment name(s)

(Elavil)
Type
Prescription Drug
How many have tried
49
Tried for
pain (43) headaches (3)
3 more
Treatment name(s)

(Klonopin)
Type
Prescription Drug
How many have tried
35
Treatment name(s)

(Low Dose Naltrexone (LDN))
Type
Prescription Drug
How many have tried
32
Treatment name(s)

(Norco)
Type
Prescription Drug
How many have tried
29
Tried for
pain (29) headaches (1)
2 more
Treatment name(s)

(Effexor XR)
Type
Prescription Drug
How many have tried
28
Tried for
depressed mood (26) pain (3)
2 more
Treatment name(s)

(Prozac)
Type
Prescription Drug
How many have tried
23
Tried for
depressed mood (18) anxious mood (4)
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 (45 evaluations)
Side effects
weight gain depressed mood 66 more
Total evaluations
64
Treatment name(s)

(Cymbalta)
Perceived effectiveness
for myalgic encephalomyelitis/chronic fatigue syndrome (57 evaluations)
Side effects
dizziness nausea 102 more
Total evaluations
110
Treatment name(s)

(Ultram)
Perceived effectiveness
for pain (28 evaluations)
Side effects
itching anorgasmia 13 more
Total evaluations
34
Tried for
pain (53) muscle pain (27)
1 more
Treatment name(s)

(Neurontin)
Perceived effectiveness
for pain (39 evaluations)
Side effects
weight gain sleepiness 24 more
Total evaluations
46
Treatment name(s)

(Elavil)
Perceived effectiveness
for pain (51 evaluations)
Side effects
constipation drowsiness 27 more
Total evaluations
61
Tried for
pain (43) headaches (3)
3 more
Treatment name(s)

(Klonopin)
Perceived effectiveness
for anxious mood (13 evaluations)
Side effects
drowsiness loss of balance 6 more
Total evaluations
18
Treatment name(s)

(Low Dose Naltrexone (LDN))
Perceived effectiveness
for fatigue (21 evaluations)
Side effects
dry mouth vivid dreams 12 more
Total evaluations
36
Treatment name(s)

(Norco)
Perceived effectiveness
for pain (10 evaluations)
Side effects
blurry vision deep itching 5 more
Total evaluations
10
Tried for
pain (29) headaches (1)
2 more
Treatment name(s)

(Effexor XR)
Perceived effectiveness
for depressed mood (19 evaluations)
Side effects
anxious mood dizziness 27 more
Total evaluations
22
Tried for
depressed mood (26) pain (3)
2 more
Treatment name(s)

(Prozac)
Perceived effectiveness
for depressed mood (9 evaluations)
Side effects
panic attacks anxious mood 15 more
Total evaluations
13
Tried for
depressed mood (18) anxious mood (4)
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 49
20s 520
30s 1,698
40s 3,613
50s 4,247
60s 2,673
70+ 587
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 1,052
20-29 years 1,411
30-39 years 1,743
40-49 years 1,381
50-59 years 485
60-69 years 60
70+ years 8

Sex

Distribution of sex

90% Female
10% Male

Types
Condition Types Proportion # of patients
Chronic fatigue immune dysfunction syndrome (CFIDS) 559
Chronic fatigue syndrome (CFS) 1,725
Myalgic encephalomyelitis (ME) 864
Neuroendocrine immune disorder 152
Post-viral fatigue syndrome (PVFS) 305
Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 7,505
Not Diagnosed 3,931

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