Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

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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
Zolpidem, Clonazepam, Trazodone
Modafinil, Amphetamine-Dextroamphetamine, Rest
Amphetamine-Dextroamphetamine, Journal Writing, Vitamin B12 (methylcobalamin)
Carisoprodol, Tizanidine, Tramadol
Zolpidem, Amitriptyline, Trazodone
Rest, Dextroamphetamine, Bupropion
Duloxetine, Bupropion, Sertraline
Tramadol, Hydrocodone-Acetaminophen, Pregabalin
Alprazolam, Clonazepam, Lorazepam
Tonsillectomy, Airborne, Colloidal Silver
CT Angiography with contrast

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

Treatments reported by members Perceived effectiveness Overall rating of side effects # of Evaluations

(Lyrica)

119

(Yentreve, Cymgen, Yelate, Cymbalta)

99

(Low Dose Naltrexone (LDN), ReVia)

18

(Adderall, D-Amphetamine Salt Combo, Amphetamine-dextroamphetamine ER, Amphetamine Salts)

14
10

(APO-Gabapentin, Gralise, PMS-Gabapentin, Neurontin)

6

(PMS-Methylphenidate, Ritalin LA, APO-Methylphenidate, Methylphenidate 5)

5

(Nuvigil)

5

(Durella, Tradorec XL, Ralivia, Dolzam)

5

(Psychosexual therapy, Psychiatrist and Psychologist, Integrative Counselling, Licensed Social Worker)

4

(Holland & Barrett Vitamin B12, Century 21 Vitamin B-12, SISU Vitamin B12, Betolvex)

4

(Medivitan)

4

(Ran-Citalo, Depramil, Citalec, Co-Citalopram)

2

(Fexmid, APO-Cyclobenzaprine, Tensodox, PMS-Cyclobenzaprine)

0
0

These charts show data from ME/CFS patients’ latest treatment evaluations
Last updated:

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

Who has Myalgic Encephalomyelitis/Chronic Fatigue Syndrome on PatientsLikeMe?

  • 10,900 patients have this condition
  • 32 new patients joined this month
  • 2,608 say ME/CFS is their primary condition

Age
Age Proportion # of patients
<20 74
20s 568
30s 1,656
40s 3,008
50s 3,063
60s 1,273
70+ 198

Gender

Distribution of females vs. males

91% Females
9% Males
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 738
20-29 years 1,002
30-39 years 1,161
40-49 years 904
50-59 years 316
60-69 years 35
70+ years 6

Types
Condition Types Proportion # of patients
Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) 21
Chronic Fatigue Syndrome (CFS) 56
Myalgic Encephalomyelitis (ME) 42
Neuroendocrine Immune Disorder 9
Post-Viral Fatigue Syndrome (PVFS) 11
Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 5,571
Not Diagnosed 3,726

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