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
144
Treatment name(s)

(Cymbalta)
Type
Prescription Drug
How many have tried
112
Treatment name(s)

(Ultram)
Type
Prescription Drug
How many have tried
62
Tried for
Pain (54) muscle pain (27)
1 more
Treatment name(s)

(Neurontin)
Type
Prescription Drug
How many have tried
61
Treatment name(s)

(Elavil)
Type
Prescription Drug
How many have tried
52
Tried for
Pain (46) headaches (3)
3 more
Treatment name(s)

(Klonopin)
Type
Prescription Drug
How many have tried
35
Treatment name(s)

(Norco)
Type
Prescription Drug
How many have tried
32
Tried for
Pain (32) headaches (1)
2 more
Treatment name(s)

(Low Dose Naltrexone (LDN))
Type
Prescription Drug
How many have tried
31
Treatment name(s)

(Effexor XR)
Type
Prescription Drug
How many have tried
31
Tried for
depressed mood (29) Pain (3)
2 more
Treatment name(s)

(Prozac)
Type
Prescription Drug
How many have tried
24
Tried for
depressed mood (19) anxious mood (4)
3 more

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 (57 evaluations)
Side effects
weight gain dizziness 77 more
Total evaluations
75
Treatment name(s)

(Cymbalta)
Perceived effectiveness
for myalgic encephalomyelitis/chronic fatigue syndrome (58 evaluations)
Side effects
dizziness nausea 107 more
Total evaluations
111
Treatment name(s)

(Ultram)
Perceived effectiveness
for Pain (28 evaluations)
Side effects
itching anorgasmia 13 more
Total evaluations
34
Tried for
Pain (54) muscle pain (27)
1 more
Treatment name(s)

(Neurontin)
Perceived effectiveness
for Pain (42 evaluations)
Side effects
weight gain sleepiness 29 more
Total evaluations
49
Treatment name(s)

(Elavil)
Perceived effectiveness
for Pain (53 evaluations)
Side effects
rapid weight gain constipation 28 more
Total evaluations
63
Tried for
Pain (46) headaches (3)
3 more
Treatment name(s)

(Klonopin)
Perceived effectiveness
for anxious mood (11 evaluations)
Side effects
loss of balance apathy 6 more
Total evaluations
16
Treatment name(s)

(Norco)
Perceived effectiveness
for Pain (9 evaluations)
Side effects
blurry vision deep itching 5 more
Total evaluations
10
Tried for
Pain (32) headaches (1)
2 more
Treatment name(s)

(Low Dose Naltrexone (LDN))
Perceived effectiveness
for fatigue (20 evaluations)
Side effects
dry mouth vivid dreams 12 more
Total evaluations
35
Treatment name(s)

(Effexor XR)
Perceived effectiveness
for depressed mood (21 evaluations)
Side effects
anxious mood dizziness 27 more
Total evaluations
24
Tried for
depressed mood (29) Pain (3)
2 more
Treatment name(s)

(Prozac)
Perceived effectiveness
for depressed mood (10 evaluations)
Side effects
panic attacks anxious mood 16 more
Total evaluations
14
Tried for
depressed mood (19) anxious mood (4)
3 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.
Last updated:

Who has myalgic encephalomyelitis/chronic fatigue syndrome on PatientsLikeMe?


Age
Age Proportion # of patients
<20 48
20s 510
30s 1,641
40s 3,490
50s 4,058
60s 2,508
70+ 544
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 1,008
20-29 years 1,357
30-39 years 1,661
40-49 years 1,315
50-59 years 460
60-69 years 54
70+ years 8

Sex

Distribution of sex

90% Female
10% Male

Types
Condition Types Proportion # of patients
Chronic fatigue immune dysfunction syndrome (CFIDS) 545
Chronic fatigue syndrome (CFS) 1,693
Myalgic encephalomyelitis (ME) 850
Neuroendocrine immune disorder 148
Post-viral fatigue syndrome (PVFS) 299
Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 7,145
Not Diagnosed 3,906

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