Myalgic encephalomyelitis/chronic fatigue syndrome

We’re all in this for good.

By sharing your stories and data, you will:
  • help each other live better and uncover the best ways to manage your health today
  • help researchers shorten the path to new treatments tomorrow

How much good can your data do? A whole lot, as co-founder Jamie Heywood explains in this video.

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.
Last updated:

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
90
Treatment name(s)

(Cymbalta)
Type
Prescription Drug
How many have tried
73
Treatment name(s)

(Neurontin)
Type
Prescription Drug
How many have tried
42
Treatment name(s)

(Ultram)
Type
Prescription Drug
How many have tried
36
Tried for
pain (31) muscle pain (17)
1 more
Treatment name(s)

(Klonopin)
Type
Prescription Drug
How many have tried
29
Treatment name(s)

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

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

(Adderall)
Type
Prescription Drug
How many have tried
23
Treatment name(s)

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

(Effexor XR)
Type
Prescription Drug
How many have tried
19
Tried for
depressed mood (19) pain (1)

Data from patients with myalgic encephalomyelitis/chronic fatigue syndrome, who reported starting treatments within the last 5 years.
Last updated:

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 (31 evaluations)
Side effects
brain fog decreased appetite 42 more
Total evaluations
43
Treatment name(s)

(Cymbalta)
Perceived effectiveness
for myalgic encephalomyelitis/chronic fatigue syndrome (15 evaluations)
Side effects
weight gain dizziness 79 more
Total evaluations
61
Treatment name(s)

(Neurontin)
Perceived effectiveness
for pain (35 evaluations)
Side effects
drowsiness sleepiness 18 more
Total evaluations
37
Treatment name(s)

(Ultram)
Perceived effectiveness
for pain (17 evaluations)
Side effects
chronic constipation constipation 7 more
Total evaluations
18
Tried for
pain (31) muscle pain (17)
1 more
Treatment name(s)

(Klonopin)
Perceived effectiveness
for anxious mood (10 evaluations)
Side effects
brain fog drowsiness 3 more
Total evaluations
14
Treatment name(s)

(Low Dose Naltrexone (LDN))
Perceived effectiveness
for fatigue (16 evaluations)
Side effects
headaches vivid dreams 10 more
Total evaluations
28
Treatment name(s)

(Elavil)
Perceived effectiveness
for pain (30 evaluations)
Side effects
weight gain constipation 19 more
Total evaluations
32
Treatment name(s)

(Adderall)
Perceived effectiveness
for fatigue (9 evaluations)
Side effects
dry mouth energy crashes 8 more
Total evaluations
12
Treatment name(s)

(Norco)
Perceived effectiveness
for pain (10 evaluations)
Side effects
blurry vision deep itching 4 more
Total evaluations
10
Tried for
pain (22) headaches (1)
Treatment name(s)

(Effexor XR)
Perceived effectiveness
for depressed mood (10 evaluations)
Side effects
anxious mood dizziness 23 more
Total evaluations
10
Tried for
depressed mood (19) pain (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.
Last updated:

Who has myalgic encephalomyelitis/chronic fatigue syndrome on PatientsLikeMe?


Age
Age Proportion # of patients
<20 35
20s 496
30s 1636
40s 3655
50s 4440
60s 3015
70+ 768
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 1100
20-29 years 1471
30-39 years 1831
40-49 years 1417
50-59 years 506
60-69 years 65
70+ years 9

Distribution of sex

Sex
Sex Proportion # of patients
Male 1360
Female 12744

Types
Condition Types Proportion # of patients
Chronic fatigue immune dysfunction syndrome (CFIDS) 608
Chronic fatigue syndrome (CFS) 1880
Myalgic encephalomyelitis (ME) 944
Neuroendocrine immune disorder 159
Post-viral fatigue syndrome (PVFS) 325
Systemic exertion intolerance disease (SEID) 6
Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 8405
Not Diagnosed 3851

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