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
53
Treatment name(s)

(Cymbalta)
Type
Prescription Drug
How many have tried
51
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
30
Treatment name(s)

(Adderall)
Type
Prescription Drug
How many have tried
25
Treatment name(s)

(Ultram)
Type
Prescription Drug
How many have tried
23
Tried for
pain (20) muscle pain (11)
1 more
Treatment name(s)

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

(Klonopin)
Type
Prescription Drug
How many have tried
19
Tried for
anxious mood (19)
Treatment name(s)

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

(Cannabidiol CBD oil)
Type
Other
How many have tried
15
Tried for
pain (12) anxious mood (8)
4 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 75 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 (26 evaluations)
Side effects
drowsiness burning sensation 13 more
Total evaluations
27
Treatment name(s)

(Adderall)
Perceived effectiveness
for fatigue (11 evaluations)
Side effects
dry mouth complete exhaustion 11 more
Total evaluations
14
Treatment name(s)

(Ultram)
Perceived effectiveness
for pain (10 evaluations)
Side effects
fatigue headaches 2 more
Total evaluations
10
Tried for
pain (20) muscle pain (11)
1 more
Treatment name(s)

(Elavil)
Perceived effectiveness
for pain (9 evaluations)
Side effects
constipation tiredness 14 more
Total evaluations
11
Tried for
pain (14) headaches (2)
2 more
Treatment name(s)

(Klonopin)
Perceived effectiveness
for anxious mood (6 evaluations)
Side effects
brain fog drowsiness 2 more
Total evaluations
7
Tried for
anxious mood (19)
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)

(Cannabidiol CBD oil)
Perceived effectiveness
for pain (6 evaluations)
Side effects
Total evaluations
8
Tried for
pain (12) anxious mood (8)
4 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 33
20s 466
30s 1709
40s 4116
50s 5707
60s 3914
70+ 1082
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 1105
20-29 years 1474
30-39 years 1840
40-49 years 1421
50-59 years 507
60-69 years 66
70+ years 8

Distribution of sex

Sex
Sex Proportion # of patients
Male 1481
Female 15656

Types
Condition Types Proportion # of patients
Chronic fatigue immune dysfunction syndrome (CFIDS) 634
Chronic fatigue syndrome (CFS) 1998
Myalgic encephalomyelitis (ME) 1020
Neuroendocrine immune disorder 164
Post-viral fatigue syndrome (PVFS) 350
Systemic exertion intolerance disease (SEID) 43
Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 8428
Not Diagnosed 3845

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