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?

Chronic Fatigue Syndrome which may also be known as Myalgic Encephalomyelitis (ME) 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, insomnia, fatigue, and pain) regardless of condition.
Last updated:

Treatments taken by people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

You’ve tried
Treatment name(s)
Type
How many have tried
Tried for
Check to add this treatment to your profile
Treatment name(s)

(Lyrica)
Type
Prescription Drug
How many have tried
332
Check to add this treatment to your profile
Treatment name(s)

(Cymbalta)
Type
Prescription Drug
How many have tried
329
Check to add this treatment to your profile
Treatment name(s)

(Ultram)
Type
Prescription Drug
How many have tried
180
Tried for
Pain (157) Muscle pain (68)
3 more
Check to add this treatment to your profile
Treatment name(s)

(Elavil)
Type
Prescription Drug
How many have tried
128
Tried for
Insomnia (87) Pain (72)
6 more
Check to add this treatment to your profile
Treatment name(s)

(Vicodin)
Type
Prescription Drug
How many have tried
118
Tried for
Pain (116) Muscle pain (4)
2 more
Check to add this treatment to your profile
Treatment name(s)

(Neurontin)
Type
Prescription Drug
How many have tried
103
Check to add this treatment to your profile
Treatment name(s)

(Klonopin)
Type
Prescription Drug
How many have tried
81
Tried for
Anxious mood (59) Insomnia (13)
4 more
Check to add this treatment to your profile
Treatment name(s)

(Desyrel)
Type
Prescription Drug
How many have tried
67
Tried for
Insomnia (51) Depressed mood (8)
4 more
Check to add this treatment to your profile
Treatment name(s)

(Ambien)
Type
Prescription Drug
How many have tried
64
Tried for
Insomnia (59) Unrefreshing or poor sleep (3)
4 more
Check to add this treatment to your profile
Treatment name(s)

(Flexeril)
Type
Prescription Drug
How many have tried
58
Tried for
Pain (44) Insomnia (4)
5 more

Data from patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, who reported starting treatments within the last 5 years.
Last updated:
You’ve tried this treatment.

Compare treatments taken by people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

You’ve tried
Treatment name(s)
Perceived effectiveness
Side effects
How many evaluations
Tried for
Check to add this treatment to your profile
Treatment name(s)

(Lyrica)
Perceived effectiveness
for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (91 evaluations)
Side effects
Weight gain Dizziness 139 more
How many evaluations
181
Check to add this treatment to your profile
Treatment name(s)

(Cymbalta)
Perceived effectiveness
for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (66 evaluations)
Side effects
Nausea Weight gain 102 more
How many evaluations
172
Check to add this treatment to your profile
Treatment name(s)

(Ultram)
Perceived effectiveness
for Pain (79 evaluations)
Side effects
Constipation Dizziness 46 more
How many evaluations
99
Tried for
Pain (157) Muscle pain (68)
3 more
Check to add this treatment to your profile
Treatment name(s)

(Elavil)
Perceived effectiveness
for Insomnia (62 evaluations)
Side effects
Dry mouth Drowsiness 34 more
How many evaluations
81
Tried for
Insomnia (87) Pain (72)
6 more
Check to add this treatment to your profile
Treatment name(s)

(Vicodin)
Perceived effectiveness
for Pain (38 evaluations)
Side effects
Constipation Drowsiness 16 more
How many evaluations
42
Tried for
Pain (116) Muscle pain (4)
2 more
Check to add this treatment to your profile
Treatment name(s)

(Neurontin)
Perceived effectiveness
for Pain (52 evaluations)
Side effects
Dizziness Weight gain 47 more
How many evaluations
68
Check to add this treatment to your profile
Treatment name(s)

(Klonopin)
Perceived effectiveness
for Anxious mood (20 evaluations)
Side effects
Drowsy in a.m. Borderline Personality Disorder 13 more
How many evaluations
38
Tried for
Anxious mood (59) Insomnia (13)
4 more
Check to add this treatment to your profile
Treatment name(s)

(Desyrel)
Perceived effectiveness
for Insomnia (24 evaluations)
Side effects
dizziness like jet lag, vagueness in head with increasing intensity. Dry mouth 7 more
How many evaluations
30
Tried for
Insomnia (51) Depressed mood (8)
4 more
Check to add this treatment to your profile
Treatment name(s)

(Ambien)
Perceived effectiveness
for Insomnia (48 evaluations)
Side effects
Diarrhea Grogginess 28 more
How many evaluations
49
Tried for
Insomnia (59) Unrefreshing or poor sleep (3)
4 more
Check to add this treatment to your profile
Treatment name(s)

(Flexeril)
Perceived effectiveness
for Pain (17 evaluations)
Side effects
Drowsiness Blurry vision 14 more
How many evaluations
21
Tried for
Pain (44) Insomnia (4)
5 more

Data from patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, who reported starting treatments within the last 5 years.
Last updated:
You’ve tried this treatment.

  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

Who has Myalgic Encephalomyelitis/Chronic Fatigue Syndrome on PatientsLikeMe?


Age
Age Proportion # of patients
<20 71
20s 562
30s 1,683
40s 3,226
50s 3,391
60s 1,611
70+ 256

Gender

Distribution of females vs. males

91% Females
9% Males
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 843
20-29 years 1,120
30-39 years 1,323
40-49 years 1,039
50-59 years 368
60-69 years 37
70+ years 6

Types
Condition Types Proportion # of patients
Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) 274
Chronic Fatigue Syndrome (CFS) 901
Myalgic Encephalomyelitis (ME) 517
Neuroendocrine Immune Disorder 72
Post-Viral Fatigue Syndrome (PVFS) 157
Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 6,142
Not Diagnosed 3,759

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