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.

What is it like to have 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:

What do patients take to treat Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and its symptoms?

You’ve tried
Treatment name(s)
Type
How many have tried
How many evaluations
Treatment name(s)

(Cymbalta, Cymgen, Yelate) 1 more
Type
Prescription Drug
How many have tried
374
How many evaluations
188
Treatment name(s)

(Lyrica, Provelyn)
Type
Prescription Drug
How many have tried
364
How many evaluations
207
Treatment name(s)

(Conzip, Dolol, Dolzam) 23 more
Type
Prescription Drug
How many have tried
208
How many evaluations
105
Treatment name(s)

(Anexsia, Lorcet 10/650, Lorcet Plus) 13 more
Type
Prescription Drug
How many have tried
131
How many evaluations
55
Treatment name(s)

(Amineurin, Amitriptyline Troche, Anapsique) 10 more
Type
Prescription Drug
How many have tried
128
How many evaluations
79
Treatment name(s)

(APO-Gabapentin, DOM-Gabapentin, Epleptin) 7 more
Type
Prescription Drug
How many have tried
107
How many evaluations
67
Treatment name(s)

(APO Clonazepam, Clonex, Clonotril) 7 more
Type
Prescription Drug
How many have tried
96
How many evaluations
40
Treatment name(s)

(Ambien, Ambien CR, Edluar) 11 more
Type
Prescription Drug
How many have tried
73
How many evaluations
60
Treatment name(s)

(Apo-Trazodone, Deprax, Desyrel) 8 more
Type
Prescription Drug
How many have tried
64
How many evaluations
28
Treatment name(s)

(APO-Cyclobenzaprine, Amrix, Fexmid) 3 more
Type
Prescription Drug
How many have tried
63
How many evaluations
21
See all 622 treatments
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 for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

You’ve tried
Treatment name(s)
How many have tried
Perceived effectiveness
Side effects
How many evaluations
Treatment name(s)

(Cymbalta, Cymgen, Yelate) 1 more
How many have tried
374
Perceived effectiveness
Side effects
Nausea Weight gain 108 more
How many evaluations
188
Treatment name(s)

(Lyrica, Provelyn)
How many have tried
364
Perceived effectiveness
Side effects
Weight gain Dizziness 144 more
How many evaluations
207
Treatment name(s)

(Conzip, Dolol, Dolzam) 23 more
How many have tried
208
Perceived effectiveness
Side effects
Constipation Headaches 49 more
How many evaluations
105
Treatment name(s)

(Anexsia, Lorcet 10/650, Lorcet Plus) 13 more
How many have tried
131
Perceived effectiveness
Side effects
Constipation Drowsiness 15 more
How many evaluations
55
Treatment name(s)

(Amineurin, Amitriptyline Troche, Anapsique) 10 more
How many have tried
128
Perceived effectiveness
Side effects
Dry mouth Drowsiness 31 more
How many evaluations
79
Treatment name(s)

(APO-Gabapentin, DOM-Gabapentin, Epleptin) 7 more
How many have tried
107
Perceived effectiveness
Side effects
Dizziness Sleepiness 43 more
How many evaluations
67
Treatment name(s)

(APO Clonazepam, Clonex, Clonotril) 7 more
How many have tried
96
Perceived effectiveness
Side effects
Drowsy in a.m. Constant brain fog 14 more
How many evaluations
40
Treatment name(s)

(Ambien, Ambien CR, Edluar) 11 more
How many have tried
73
Perceived effectiveness
Side effects
Diarrhea Grogginess 29 more
How many evaluations
60
Treatment name(s)

(Apo-Trazodone, Deprax, Desyrel) 8 more
How many have tried
64
Perceived effectiveness
Side effects
dizziness like jet lag, vagueness in head with increasing intensity. Dry mouth 7 more
How many evaluations
28
Treatment name(s)

(APO-Cyclobenzaprine, Amrix, Fexmid) 3 more
How many have tried
63
Perceived effectiveness
Side effects
Drowsiness Blurry vision 13 more
How many evaluations
21
See all 622 treatments
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 68
20s 566
30s 1,673
40s 3,173
50s 3,295
60s 1,534
70+ 245

Gender

Distribution of females vs. males

91% Females
9% Males
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 815
20-29 years 1,094
30-39 years 1,281
40-49 years 1,003
50-59 years 356
60-69 years 38
70+ years 6

Types
Condition Types Proportion # of patients
Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) 209
Chronic Fatigue Syndrome (CFS) 721
Myalgic Encephalomyelitis (ME) 407
Neuroendocrine Immune Disorder 54
Post-Viral Fatigue Syndrome (PVFS) 120
Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 5,993
Not Diagnosed 3,749

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