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
57
Treatment name(s)

(Cymbalta)
Type
Prescription Drug
How many have tried
52
Treatment name(s)

(Low Dose Naltrexone (LDN))
Type
Prescription Drug
How many have tried
32
Treatment name(s)

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

(Ultram)
Type
Prescription Drug
How many have tried
25
Tried for
pain (23) muscle pain (12)
1 more
Treatment name(s)

(Adderall)
Type
Prescription Drug
How many have tried
24
Tried for
fatigue (22) depressed mood (3)
2 more
Treatment name(s)

(Klonopin)
Type
Prescription Drug
How many have tried
20
Tried for
anxious mood (20)
Treatment name(s)

(Elavil)
Type
Prescription Drug
How many have tried
19
Tried for
pain (14) headaches (2)
2 more
Treatment name(s)

(Norco)
Type
Prescription Drug
How many have tried
16
Tried for
pain (16) headaches (1)
Treatment name(s)

(Pamelor)
Type
Prescription Drug
How many have tried
15
Tried for
pain (13) 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 (21 evaluations)
Side effects
drowsiness headaches 28 more
Total evaluations
31
Treatment name(s)

(Cymbalta)
Perceived effectiveness
for myalgic encephalomyelitis/chronic fatigue syndrome (10 evaluations)
Side effects
weight gain nausea 74 more
Total evaluations
45
Treatment name(s)

(Low Dose Naltrexone (LDN))
Perceived effectiveness
for fatigue (20 evaluations)
Side effects
headaches vivid dreams 13 more
Total evaluations
32
Treatment name(s)

(Neurontin)
Perceived effectiveness
for pain (24 evaluations)
Side effects
drowsiness burning sensation 12 more
Total evaluations
25
Treatment name(s)

(Ultram)
Perceived effectiveness
for pain (13 evaluations)
Side effects
chronic constipation excessive dry mouth 5 more
Total evaluations
13
Tried for
pain (23) muscle pain (12)
1 more
Treatment name(s)

(Adderall)
Perceived effectiveness
for fatigue (11 evaluations)
Side effects
dry mouth energy crashes 10 more
Total evaluations
14
Tried for
fatigue (22) depressed mood (3)
2 more
Treatment name(s)

(Klonopin)
Perceived effectiveness
for anxious mood (7 evaluations)
Side effects
brain fog drowsiness 2 more
Total evaluations
8
Tried for
anxious mood (20)
Treatment name(s)

(Elavil)
Perceived effectiveness
for pain (10 evaluations)
Side effects
constipation tiredness 15 more
Total evaluations
12
Tried for
pain (14) headaches (2)
2 more
Treatment name(s)

(Norco)
Perceived effectiveness
for pain (7 evaluations)
Side effects
blurry vision deep itching 3 more
Total evaluations
7
Tried for
pain (16) headaches (1)
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 (13) 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?


Age
Age Proportion # of patients
<20 28
20s 467
30s 1591
40s 3614
50s 4696
60s 3302
70+ 942
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 1103
20-29 years 1468
30-39 years 1835
40-49 years 1414
50-59 years 506
60-69 years 66
70+ years 9

Distribution of sex

Sex
Sex Proportion # of patients
Male 1417
Female 13270

Types
Condition Types Proportion # of patients
Chronic fatigue immune dysfunction syndrome (CFIDS) 628
Chronic fatigue syndrome (CFS) 1967
Myalgic encephalomyelitis (ME) 1008
Neuroendocrine immune disorder 161
Post-viral fatigue syndrome (PVFS) 344
Systemic exertion intolerance disease (SEID) 37
Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 8412
Not Diagnosed 3839

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