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)

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

(Lyrica)
Type
Prescription Drug
How many have tried
50
Treatment name(s)

(Low Dose Naltrexone (LDN))
Type
Prescription Drug
How many have tried
30
Treatment name(s)

(Neurontin)
Type
Prescription Drug
How many have tried
26
Treatment name(s)

(Adderall)
Type
Prescription Drug
How many have tried
23
Tried for
fatigue (22) depressed mood (2)
2 more
Treatment name(s)

(Ultram)
Type
Prescription Drug
How many have tried
21
Tried for
pain (19) muscle pain (9)
1 more
Treatment name(s)

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

(Elavil)
Type
Prescription Drug
How many have tried
18
Tried for
pain (13) headaches (2)
2 more
Treatment name(s)

(Cannabidiol CBD oil)
Type
Other
How many have tried
16
Tried for
pain (13) anxious mood (9)
4 more
Treatment name(s)

(Norco)
Type
Prescription Drug
How many have tried
16
Tried for
pain (16) headaches (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)

(Cymbalta)
Perceived effectiveness
for depressed mood (18 evaluations)
Side effects
weight gain nausea 75 more
Total evaluations
47
Treatment name(s)

(Lyrica)
Perceived effectiveness
for myalgic encephalomyelitis/chronic fatigue syndrome (18 evaluations)
Side effects
weight gain agitation with restlessness 29 more
Total evaluations
29
Treatment name(s)

(Low Dose Naltrexone (LDN))
Perceived effectiveness
for fatigue (20 evaluations)
Side effects
headaches vivid dreams 12 more
Total evaluations
31
Treatment name(s)

(Neurontin)
Perceived effectiveness
for pain (23 evaluations)
Side effects
burning sensation cognitive confusion 12 more
Total evaluations
25
Treatment name(s)

(Adderall)
Perceived effectiveness
for fatigue (11 evaluations)
Side effects
dry mouth complete exhaustion 10 more
Total evaluations
13
Tried for
fatigue (22) depressed mood (2)
2 more
Treatment name(s)

(Ultram)
Perceived effectiveness
for pain (10 evaluations)
Side effects
fatigue headaches 2 more
Total evaluations
10
Tried for
pain (19) muscle pain (9)
1 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)

(Elavil)
Perceived effectiveness
for pain (7 evaluations)
Side effects
constipation tiredness 13 more
Total evaluations
9
Tried for
pain (13) headaches (2)
2 more
Treatment name(s)

(Cannabidiol CBD oil)
Perceived effectiveness
for pain (9 evaluations)
Side effects
Total evaluations
11
Tried for
pain (13) anxious mood (9)
4 more
Treatment name(s)

(Norco)
Perceived effectiveness
for pain (5 evaluations)
Side effects
blurry vision deep itching 2 more
Total evaluations
5
Tried for
pain (16) headaches (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 30
20s 473
30s 1743
40s 4290
50s 6201
60s 4222
70+ 1198
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 1104
20-29 years 1474
30-39 years 1844
40-49 years 1424
50-59 years 509
60-69 years 66
70+ years 8

Distribution of sex

Sex
Sex Proportion # of patients
Male 1504
Female 16775

Types
Condition Types Proportion # of patients
Chronic fatigue immune dysfunction syndrome (CFIDS) 641
Chronic fatigue syndrome (CFS) 2007
Myalgic encephalomyelitis (ME) 1026
Neuroendocrine immune disorder 165
Post-viral fatigue syndrome (PVFS) 353
Systemic exertion intolerance disease (SEID) 47
Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 8437
Not Diagnosed 3845

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