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
62
Treatment name(s)

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

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

(Neurontin)
Type
Prescription Drug
How many have tried
31
Treatment name(s)

(Ultram)
Type
Prescription Drug
How many have tried
28
Tried for
pain (25) muscle pain (13)
1 more
Treatment name(s)

(Adderall)
Type
Prescription Drug
How many have tried
24
Treatment name(s)

(Klonopin)
Type
Prescription Drug
How many have tried
21
Tried for
anxious mood (21)
Treatment name(s)

(Elavil)
Type
Prescription Drug
How many have tried
20
Tried for
pain (15) headaches (2)
2 more
Treatment name(s)

(Pamelor)
Type
Prescription Drug
How many have tried
17
Tried for
pain (14) depressed mood (5)
3 more
Treatment name(s)

(Lexapro)
Type
Prescription Drug
How many have tried
15
Tried for
anxious mood (11) depressed mood (8)

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 (24 evaluations)
Side effects
decreased appetite dizziness 31 more
Total evaluations
34
Treatment name(s)

(Cymbalta)
Perceived effectiveness
for myalgic encephalomyelitis/chronic fatigue syndrome (12 evaluations)
Side effects
weight gain dizziness 73 more
Total evaluations
49
Treatment name(s)

(Low Dose Naltrexone (LDN))
Perceived effectiveness
for fatigue (18 evaluations)
Side effects
headaches vivid dreams 12 more
Total evaluations
31
Treatment name(s)

(Neurontin)
Perceived effectiveness
for pain (25 evaluations)
Side effects
drowsiness burning sensation 13 more
Total evaluations
26
Treatment name(s)

(Ultram)
Perceived effectiveness
for pain (14 evaluations)
Side effects
chronic constipation constipation 6 more
Total evaluations
14
Tried for
pain (25) muscle pain (13)
1 more
Treatment name(s)

(Adderall)
Perceived effectiveness
for fatigue (11 evaluations)
Side effects
dry mouth energy crashes 10 more
Total evaluations
14
Treatment name(s)

(Klonopin)
Perceived effectiveness
for anxious mood (7 evaluations)
Side effects
brain fog drowsiness 2 more
Total evaluations
8
Tried for
anxious mood (21)
Treatment name(s)

(Elavil)
Perceived effectiveness
for pain (26 evaluations)
Side effects
constipation tiredness 15 more
Total evaluations
28
Tried for
pain (15) headaches (2)
2 more
Treatment name(s)

(Pamelor)
Perceived effectiveness
for pain (7 evaluations)
Side effects
weight gain agitation with irritability 20 more
Total evaluations
9
Tried for
pain (14) depressed mood (5)
3 more
Treatment name(s)

(Lexapro)
Perceived effectiveness
for anxious mood (10 evaluations)
Side effects
agitation cognitive confusion 10 more
Total evaluations
12
Tried for
anxious mood (11) depressed mood (8)
  • 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 30
20s 485
30s 1602
40s 3608
50s 4543
60s 3139
70+ 848
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 1103
20-29 years 1464
30-39 years 1836
40-49 years 1414
50-59 years 504
60-69 years 65
70+ years 10

Distribution of sex

Sex
Sex Proportion # of patients
Male 1388
Female 12933

Types
Condition Types Proportion # of patients
Chronic fatigue immune dysfunction syndrome (CFIDS) 619
Chronic fatigue syndrome (CFS) 1939
Myalgic encephalomyelitis (ME) 985
Neuroendocrine immune disorder 160
Post-viral fatigue syndrome (PVFS) 333
Systemic exertion intolerance disease (SEID) 26
Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 8405
Not Diagnosed 3841

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