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
57
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
29
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
Tried for
fatigue (22) depressed mood (3)
2 more
Treatment name(s)

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

(Klonopin)
Type
Prescription Drug
How many have tried
20
Tried for
anxious mood (20)
Treatment name(s)

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

(Norco)
Type
Prescription Drug
How many have tried
16
Tried for
pain (16) headaches (1)

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 (21 evaluations)
Side effects
drowsiness headaches 28 more
Total evaluations
31
Treatment name(s)

(Cymbalta)
Perceived effectiveness
for myalgic encephalomyelitis/chronic fatigue syndrome (12 evaluations)
Side effects
weight gain dizziness 74 more
Total evaluations
50
Treatment name(s)

(Low Dose Naltrexone (LDN))
Perceived effectiveness
for fatigue (20 evaluations)
Side effects
headaches vivid dreams 13 more
Total evaluations
32
Treatment name(s)

(Neurontin)
Perceived effectiveness
for pain (24 evaluations)
Side effects
drowsiness burning sensation 12 more
Total evaluations
25
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
Tried for
fatigue (22) depressed mood (3)
2 more
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)

(Klonopin)
Perceived effectiveness
for anxious mood (7 evaluations)
Side effects
brain fog drowsiness 2 more
Total evaluations
8
Tried for
anxious mood (20)
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)

(Norco)
Perceived effectiveness
for pain (7 evaluations)
Side effects
blurry vision deep itching 3 more
Total evaluations
7
Tried for
pain (16) headaches (1)
  • 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 29
20s 472
30s 1595
40s 3584
50s 4580
60s 3177
70+ 897
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 1102
20-29 years 1466
30-39 years 1836
40-49 years 1413
50-59 years 505
60-69 years 66
70+ years 9

Distribution of sex

Sex
Sex Proportion # of patients
Male 1405
Female 13002

Types
Condition Types Proportion # of patients
Chronic fatigue immune dysfunction syndrome (CFIDS) 626
Chronic fatigue syndrome (CFS) 1956
Myalgic encephalomyelitis (ME) 999
Neuroendocrine immune disorder 160
Post-viral fatigue syndrome (PVFS) 342
Systemic exertion intolerance disease (SEID) 34
Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 8407
Not Diagnosed 3839

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