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
103
Treatment name(s)

(Cymbalta)
Type
Prescription Drug
How many have tried
82
Treatment name(s)

(Neurontin)
Type
Prescription Drug
How many have tried
45
Treatment name(s)

(Ultram)
Type
Prescription Drug
How many have tried
45
Tried for
pain (39) muscle pain (20)
1 more
Treatment name(s)

(Klonopin)
Type
Prescription Drug
How many have tried
33
Treatment name(s)

(Elavil)
Type
Prescription Drug
How many have tried
29
Tried for
pain (25) headaches (2)
3 more
Treatment name(s)

(Norco)
Type
Prescription Drug
How many have tried
26
Tried for
pain (26) headaches (1)
Treatment name(s)

(Low Dose Naltrexone (LDN))
Type
Prescription Drug
How many have tried
26
Treatment name(s)

(Effexor XR)
Type
Prescription Drug
How many have tried
24
Tried for
depressed mood (22) pain (2)
1 more
Treatment name(s)

(Adderall)
Type
Prescription Drug
How many have tried
22

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 (32 evaluations)
Side effects
weight gain brain fog 46 more
Total evaluations
47
Treatment name(s)

(Cymbalta)
Perceived effectiveness
for myalgic encephalomyelitis/chronic fatigue syndrome (26 evaluations)
Side effects
weight gain nausea 81 more
Total evaluations
74
Treatment name(s)

(Neurontin)
Perceived effectiveness
for pain (36 evaluations)
Side effects
sleepiness drowsiness 22 more
Total evaluations
38
Treatment name(s)

(Ultram)
Perceived effectiveness
for pain (19 evaluations)
Side effects
itching chronic constipation 8 more
Total evaluations
20
Tried for
pain (39) muscle pain (20)
1 more
Treatment name(s)

(Klonopin)
Perceived effectiveness
for anxious mood (10 evaluations)
Side effects
brain fog drowsiness 4 more
Total evaluations
15
Treatment name(s)

(Elavil)
Perceived effectiveness
for pain (38 evaluations)
Side effects
weight gain constipation 20 more
Total evaluations
40
Tried for
pain (25) headaches (2)
3 more
Treatment name(s)

(Norco)
Perceived effectiveness
for pain (10 evaluations)
Side effects
blurry vision deep itching 4 more
Total evaluations
10
Tried for
pain (26) headaches (1)
Treatment name(s)

(Low Dose Naltrexone (LDN))
Perceived effectiveness
for fatigue (18 evaluations)
Side effects
headaches vivid dreams 11 more
Total evaluations
30
Treatment name(s)

(Effexor XR)
Perceived effectiveness
for depressed mood (14 evaluations)
Side effects
anxious mood dizziness 24 more
Total evaluations
16
Tried for
depressed mood (22) pain (2)
1 more
Treatment name(s)

(Adderall)
Perceived effectiveness
for fatigue (8 evaluations)
Side effects
dry mouth headaches 8 more
Total evaluations
11
  • 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 42
20s 501
30s 1,659
40s 3,630
50s 4,351
60s 2,894
70+ 692
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 1,079
20-29 years 1,453
30-39 years 1,801
40-49 years 1,399
50-59 years 493
60-69 years 65
70+ years 8

Distribution of sex

Sex
Sex Proportion # of patients
Male 1,331
Female 12,494

Types
Condition Types Proportion # of patients
Chronic fatigue immune dysfunction syndrome (CFIDS) 595
Chronic fatigue syndrome (CFS) 1,836
Myalgic encephalomyelitis (ME) 917
Neuroendocrine immune disorder 156
Post-viral fatigue syndrome (PVFS) 319
Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 8,256
Not Diagnosed 3,838

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