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
93
Treatment name(s)

(Cymbalta)
Type
Prescription Drug
How many have tried
76
Treatment name(s)

(Neurontin)
Type
Prescription Drug
How many have tried
42
Treatment name(s)

(Ultram)
Type
Prescription Drug
How many have tried
40
Tried for
pain (35) muscle pain (17)
1 more
Treatment name(s)

(Klonopin)
Type
Prescription Drug
How many have tried
29
Treatment name(s)

(Low Dose Naltrexone (LDN))
Type
Prescription Drug
How many have tried
28
Treatment name(s)

(Elavil)
Type
Prescription Drug
How many have tried
26
Treatment name(s)

(Adderall)
Type
Prescription Drug
How many have tried
26
Treatment name(s)

(Norco)
Type
Prescription Drug
How many have tried
25
Tried for
pain (25) headaches (1)
Treatment name(s)

(Effexor XR)
Type
Prescription Drug
How many have tried
20
Tried for
depressed mood (20) pain (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 (31 evaluations)
Side effects
brain fog decreased appetite 41 more
Total evaluations
43
Treatment name(s)

(Cymbalta)
Perceived effectiveness
for myalgic encephalomyelitis/chronic fatigue syndrome (18 evaluations)
Side effects
weight gain dizziness 81 more
Total evaluations
64
Treatment name(s)

(Neurontin)
Perceived effectiveness
for pain (34 evaluations)
Side effects
drowsiness sleepiness 18 more
Total evaluations
36
Treatment name(s)

(Ultram)
Perceived effectiveness
for pain (20 evaluations)
Side effects
itching chronic constipation 8 more
Total evaluations
21
Tried for
pain (35) muscle pain (17)
1 more
Treatment name(s)

(Klonopin)
Perceived effectiveness
for anxious mood (9 evaluations)
Side effects
brain fog drowsiness 3 more
Total evaluations
13
Treatment name(s)

(Low Dose Naltrexone (LDN))
Perceived effectiveness
for fatigue (16 evaluations)
Side effects
headaches vivid dreams 10 more
Total evaluations
28
Treatment name(s)

(Elavil)
Perceived effectiveness
for pain (30 evaluations)
Side effects
weight gain constipation 19 more
Total evaluations
32
Treatment name(s)

(Adderall)
Perceived effectiveness
for fatigue (10 evaluations)
Side effects
dry mouth energy crashes 11 more
Total evaluations
13
Treatment name(s)

(Norco)
Perceived effectiveness
for pain (10 evaluations)
Side effects
blurry vision deep itching 4 more
Total evaluations
10
Tried for
pain (25) headaches (1)
Treatment name(s)

(Effexor XR)
Perceived effectiveness
for depressed mood (11 evaluations)
Side effects
anxious mood dizziness 24 more
Total evaluations
11
Tried for
depressed mood (20) pain (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 36
20s 499
30s 1638
40s 3650
50s 4428
60s 2983
70+ 755
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 1098
20-29 years 1471
30-39 years 1829
40-49 years 1418
50-59 years 505
60-69 years 65
70+ years 9

Distribution of sex

Sex
Sex Proportion # of patients
Male 1352
Female 12696

Types
Condition Types Proportion # of patients
Chronic fatigue immune dysfunction syndrome (CFIDS) 604
Chronic fatigue syndrome (CFS) 1871
Myalgic encephalomyelitis (ME) 936
Neuroendocrine immune disorder 159
Post-viral fatigue syndrome (PVFS) 323
Systemic exertion intolerance disease (SEID) 2
Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 8395
Not Diagnosed 3851

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