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
44
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
30
Treatment name(s)

(Elavil)
Type
Prescription Drug
How many have tried
28
Treatment name(s)

(Low Dose Naltrexone (LDN))
Type
Prescription Drug
How many have tried
27
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
21
Tried for
depressed mood (21) 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 (36 evaluations)
Side effects
sleepiness drowsiness 23 more
Total evaluations
38
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 (8 evaluations)
Side effects
brain fog drowsiness 3 more
Total evaluations
12
Treatment name(s)

(Elavil)
Perceived effectiveness
for pain (37 evaluations)
Side effects
weight gain constipation 20 more
Total evaluations
39
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)

(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 (12 evaluations)
Side effects
anxious mood dizziness 24 more
Total evaluations
12
Tried for
depressed mood (21) 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 501
30s 1639
40s 3655
50s 4406
60s 2957
70+ 734
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 1095
20-29 years 1469
30-39 years 1822
40-49 years 1415
50-59 years 503
60-69 years 65
70+ years 9

Distribution of sex

Sex
Sex Proportion # of patients
Male 1345
Female 12642

Types
Condition Types Proportion # of patients
Chronic fatigue immune dysfunction syndrome (CFIDS) 602
Chronic fatigue syndrome (CFS) 1862
Myalgic encephalomyelitis (ME) 933
Neuroendocrine immune disorder 158
Post-viral fatigue syndrome (PVFS) 322
Systemic exertion intolerance disease (SEID) 1
Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 8372
Not Diagnosed 3848

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