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
80
Treatment name(s)

(Cymbalta)
Type
Prescription Drug
How many have tried
69
Treatment name(s)

(Neurontin)
Type
Prescription Drug
How many have tried
41
Treatment name(s)

(Ultram)
Type
Prescription Drug
How many have tried
36
Tried for
pain (31) muscle pain (16)
1 more
Treatment name(s)

(Low Dose Naltrexone (LDN))
Type
Prescription Drug
How many have tried
29
Treatment name(s)

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

(Elavil)
Type
Prescription Drug
How many have tried
24
Tried for
pain (19) headaches (2)
2 more
Treatment name(s)

(Adderall)
Type
Prescription Drug
How many have tried
22
Treatment name(s)

(Norco)
Type
Prescription Drug
How many have tried
19
Tried for
pain (19) headaches (1)
Treatment name(s)

(Pamelor)
Type
Prescription Drug
How many have tried
18
Tried for
pain (15) depressed mood (5)
3 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 (29 evaluations)
Side effects
brain fog decreased appetite 36 more
Total evaluations
40
Treatment name(s)

(Cymbalta)
Perceived effectiveness
for myalgic encephalomyelitis/chronic fatigue syndrome (14 evaluations)
Side effects
weight gain dizziness 79 more
Total evaluations
60
Treatment name(s)

(Neurontin)
Perceived effectiveness
for pain (34 evaluations)
Side effects
drowsiness weight gain 17 more
Total evaluations
36
Treatment name(s)

(Ultram)
Perceived effectiveness
for pain (16 evaluations)
Side effects
chronic constipation constipation 7 more
Total evaluations
17
Tried for
pain (31) muscle pain (16)
1 more
Treatment name(s)

(Low Dose Naltrexone (LDN))
Perceived effectiveness
for fatigue (17 evaluations)
Side effects
headaches vivid dreams 11 more
Total evaluations
29
Treatment name(s)

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

(Elavil)
Perceived effectiveness
for pain (28 evaluations)
Side effects
constipation tiredness 18 more
Total evaluations
30
Tried for
pain (19) headaches (2)
2 more
Treatment name(s)

(Adderall)
Perceived effectiveness
for fatigue (10 evaluations)
Side effects
dry mouth energy crashes 9 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 (19) headaches (1)
Treatment name(s)

(Pamelor)
Perceived effectiveness
for pain (6 evaluations)
Side effects
weight gain agitation with irritability 20 more
Total evaluations
8
Tried for
pain (15) depressed mood (5)
3 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?


Age
Age Proportion # of patients
<20 34
20s 495
30s 1639
40s 3641
50s 4473
60s 3076
70+ 786
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 1102
20-29 years 1472
30-39 years 1836
40-49 years 1416
50-59 years 506
60-69 years 65
70+ years 10

Distribution of sex

Sex
Sex Proportion # of patients
Male 1373
Female 12838

Types
Condition Types Proportion # of patients
Chronic fatigue immune dysfunction syndrome (CFIDS) 612
Chronic fatigue syndrome (CFS) 1900
Myalgic encephalomyelitis (ME) 956
Neuroendocrine immune disorder 160
Post-viral fatigue syndrome (PVFS) 329
Systemic exertion intolerance disease (SEID) 11
Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 8419
Not Diagnosed 3853

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