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
107
Treatment name(s)

(Cymbalta)
Type
Prescription Drug
How many have tried
80
Treatment name(s)

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

(Ultram)
Type
Prescription Drug
How many have tried
44
Tried for
pain (37) muscle pain (20)
1 more
Treatment name(s)

(Klonopin)
Type
Prescription Drug
How many have tried
32
Treatment name(s)

(Elavil)
Type
Prescription Drug
How many have tried
30
Tried for
pain (26) headaches (2)
3 more
Treatment name(s)

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

(Norco)
Type
Prescription Drug
How many have tried
22
Tried for
pain (22) headaches (1)
Treatment name(s)

(Adderall)
Type
Prescription Drug
How many have tried
21

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 (37 evaluations)
Side effects
weight gain brain fog 48 more
Total evaluations
53
Treatment name(s)

(Cymbalta)
Perceived effectiveness
for myalgic encephalomyelitis/chronic fatigue syndrome (28 evaluations)
Side effects
weight gain nausea 80 more
Total evaluations
74
Treatment name(s)

(Neurontin)
Perceived effectiveness
for pain (37 evaluations)
Side effects
sleepiness weight gain 22 more
Total evaluations
39
Treatment name(s)

(Ultram)
Perceived effectiveness
for pain (22 evaluations)
Side effects
itching chronic constipation 9 more
Total evaluations
28
Tried for
pain (37) 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 (26) headaches (2)
3 more
Treatment name(s)

(Low Dose Naltrexone (LDN))
Perceived effectiveness
for fatigue (19 evaluations)
Side effects
dry mouth vivid dreams 12 more
Total evaluations
34
Treatment name(s)

(Effexor XR)
Perceived effectiveness
for depressed mood (15 evaluations)
Side effects
anxious mood dizziness 25 more
Total evaluations
17
Tried for
depressed mood (22) pain (2)
1 more
Treatment name(s)

(Norco)
Perceived effectiveness
for pain (9 evaluations)
Side effects
blurry vision deep itching 4 more
Total evaluations
9
Tried for
pain (22) headaches (1)
Treatment name(s)

(Adderall)
Perceived effectiveness
for fatigue (7 evaluations)
Side effects
headaches indigestion 7 more
Total evaluations
10
  • 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 45
20s 510
30s 1,656
40s 3,610
50s 4,309
60s 2,812
70+ 661
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 1,070
20-29 years 1,438
30-39 years 1,773
40-49 years 1,386
50-59 years 490
60-69 years 62
70+ years 8

Distribution of sex

Sex
Sex Proportion # of patients
Male 1,313
Female 12,343

Types
Condition Types Proportion # of patients
Chronic fatigue immune dysfunction syndrome (CFIDS) 579
Chronic fatigue syndrome (CFS) 1,792
Myalgic encephalomyelitis (ME) 898
Neuroendocrine immune disorder 154
Post-viral fatigue syndrome (PVFS) 315
Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 8,140
Not Diagnosed 3,830

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