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
41
Treatment name(s)

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

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

(Adderall)
Type
Prescription Drug
How many have tried
20
Treatment name(s)

(Ultram)
Type
Prescription Drug
How many have tried
20
Tried for
pain (18) muscle pain (8)
1 more
Treatment name(s)

(Neurontin)
Type
Prescription Drug
How many have tried
19
Treatment name(s)

(Klonopin)
Type
Prescription Drug
How many have tried
17
Tried for
anxious mood (17)
Treatment name(s)

(Cannabidiol CBD oil)
Type
Other
How many have tried
16
Tried for
pain (13) anxious mood (9)
4 more
Treatment name(s)

(Elavil)
Type
Prescription Drug
How many have tried
14
Tried for
pain (11) depressed mood (1)
2 more
Treatment name(s)

(Pamelor)
Type
Prescription Drug
How many have tried
14
Tried for
pain (12) depressed mood (4)
2 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 (18 evaluations)
Side effects
weight gain agitation with restlessness 26 more
Total evaluations
28
Treatment name(s)

(Cymbalta)
Perceived effectiveness
for myalgic encephalomyelitis/chronic fatigue syndrome (6 evaluations)
Side effects
excessive daytime sleepiness (somnolence) headaches 65 more
Total evaluations
32
Treatment name(s)

(Low Dose Naltrexone (LDN))
Perceived effectiveness
for fatigue (17 evaluations)
Side effects
insomnia vivid dreams 14 more
Total evaluations
29
Treatment name(s)

(Adderall)
Perceived effectiveness
for fatigue (10 evaluations)
Side effects
dry mouth complete exhaustion 9 more
Total evaluations
12
Treatment name(s)

(Ultram)
Perceived effectiveness
for pain (9 evaluations)
Side effects
fatigue headaches 2 more
Total evaluations
9
Tried for
pain (18) muscle pain (8)
1 more
Treatment name(s)

(Neurontin)
Perceived effectiveness
for pain (19 evaluations)
Side effects
burning sensation cognitive confusion 11 more
Total evaluations
20
Treatment name(s)

(Klonopin)
Perceived effectiveness
for anxious mood (5 evaluations)
Side effects
brain fog drowsiness 2 more
Total evaluations
6
Tried for
anxious mood (17)
Treatment name(s)

(Cannabidiol CBD oil)
Perceived effectiveness
for pain (9 evaluations)
Side effects
Total evaluations
11
Tried for
pain (13) anxious mood (9)
4 more
Treatment name(s)

(Elavil)
Perceived effectiveness
for pain (8 evaluations)
Side effects
constipation tiredness 12 more
Total evaluations
9
Tried for
pain (11) depressed mood (1)
2 more
Treatment name(s)

(Pamelor)
Perceived effectiveness
for pain (7 evaluations)
Side effects
agitation with irritability anxiety and frustration 20 more
Total evaluations
8
Tried for
pain (12) depressed mood (4)
2 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?

  • 6 new patients joined this month
  • 4176 say ME/CFS is their primary condition

Age
Age Proportion # of patients
<20 27
20s 448
30s 1702
40s 4190
50s 6208
60s 4339
70+ 1261
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 1103
20-29 years 1474
30-39 years 1845
40-49 years 1425
50-59 years 509
60-69 years 66
70+ years 8

Distribution of sex

Sex
Sex Proportion # of patients
Male 1508
Female 16789

Types
Condition Types Proportion # of patients
Chronic fatigue immune dysfunction syndrome (CFIDS) 641
Chronic fatigue syndrome (CFS) 2010
Myalgic encephalomyelitis (ME) 1025
Neuroendocrine immune disorder 165
Post-viral fatigue syndrome (PVFS) 351
Systemic exertion intolerance disease (SEID) 47
Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 8438
Not Diagnosed 3846

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