What are common symptoms with ME/CFS?

It is important to note that the ME/CFS diagnosis often requires only 4 of these when other probable causes are excluded. Typically it is 6 months of tests to do a full and proper elimination of all of the probable causes. Some MDs are known to drop patients into this category (unprofessionally) instead of having to do full testing.

On some facebook groups, I have seen new ME/CFS patients ask “is XYZ common with ME/CFS” – this attempts to answer this with sources of information gathered from experienced professionals.

It is important to note that symptoms, severity etc changes over time –for each of the four incidence of ME/CFS that I have had, the dominant symptoms were different and in transition to remission, symptoms changed a lot (including new one appearing for short periods!)!

Life is never dull with ME/CFS Symptoms!

extreme physical and mental tiredness (fatigue)

sleep problems, such as insomnia

muscle or joint pain

headaches

sore throat or sore glands that aren’t swollen

problems thinking, remembering or concentrating

flu-like symptoms

feeling dizzy or sick

fast or irregular heartbeats (heart palpitations)

National Health Service (UK)

Greatly lowered ability to do activities that were usual before the ill Worsening of symptoms while standing or sitting upright. This is called orthostatic intolerance

Muscle pain and aches

Joint pain without swelling or redness

Headaches, either new or worsening

Tender lymph nodes in the neck or armpits

A sore throat that happens often

Digestive issues, like irritable bowel syndrome

Chills and night sweats

Allergies and sensitivities to foods, odors, chemicals, or noise

Center for Disease Control (US)

[ ]  Fatigue, characterized as a profound loss of energy
[   ] Worsening of symptoms after physical or mental exertion (post-exertional malaise, or PEM)
[   ] Cognitive function problems
[   ] Attention deficit disorder (inability to concentrate)
[   ] Feeling “spaced out” or “cloudy,” “brain fog”
[   ] Calculation difficulties
[   ] Memory loss
[   ] Spatial disorientation
[   ] Word searching or saying the wrong word
[   ] Sleep disturbance, unrefreshing sleep
[   ] Flu-like malaise, feeling “sick all over”, or “poisoned”
[   ] Sore throat
[   ] Low-grade fever or feeling hot often
[   ] Low body temperature
[   ] Muscle and joint aches with or without “trigger points”
[   ] Headache
[   ] Changes in vision
[   ] Numbness or tingling sensations
[   ] Loss of balance, dizziness
[   ] Unusually vivid dreams, nightmares, or lack of dreams
[   ] Depression
[   ] Anxiety, panic attacks
[   ] Personality changes
[   ] Mood swings
[   ] Difficulty moving the tongue to speak
[   ] Tinnitus (ringing in the ears)
[   ] Paralysis
[   ] Severe muscle weakness
[   ] Difficulty walking
[   ] Blackouts
[   ] Photophobia (light sensitivity), and increased sensitivity to noise, smells, touch
[   ] Alcohol intolerance
[   ] Changes in taste, smell, hearing
[   ] Decreased libido, impotence
[   ] Muscle twitches
[   ] Severe premenstrual syndrome (PMS) or exacerbation of symptoms before and during period
[   ] Weight changes, usually loss followed by gain
[   ] Painful, swollen lymph nodes, especially on the neck and underarms
[   ] Abdominal pain, diarrhea, nausea, gas, irritable bowel
[   ] New allergic reactions to medicines, food, and other substances
[   ] Night sweats
[   ] Heart palpitations
[   ] Uncomfortable or frequent urination
[   ] Rash of herpes simplex or shingles
[   ] Flushing, rash
[   ] Hair loss
[   ] Chest pain
[   ] Dry eyes and mouth (sicca)
[   ] Cough, dry
[   ] Canker sores
[   ] Cold hands and feet
[   ] Shortness of breath
[   ] Temperature and weather sensitivity
[   ] Symptoms worsen when standing up (orthostatic intolerance)
[   ] Seizures, usually petit mal, but sometimes grand mal

American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society

. Most Common Symptoms of ME/CFS
Exhaustion, made worse by physical exercise (100%)
Low-grade fever in early stages (60-95%)
Recurrent flu-like illness (75%)
Frequent pharyngitis (sore throats) (50-75%)
Joint and muscle pain (65%)
Severe muscle weakness (40-70%)
Stiffness (50-60%)
Post-exertional fatigue & flu-like symptoms (50-60%)
Multiple sensitivities to medicines,  foods, and chemicals (40-60%)
Severe nasal & other allergies (often with worsening of previous mild allergies) (40-60%)
Frequently recurring, difficult to treat respiratory infections (40-60%)
Dyspnea (labored breathing or hunger for air) on exertion
Painful lymph nodes (especially on neck and under arms) (30-40%)
2. Neurological Symptoms
Sleep disorders & unrefreshing sleep (50-90%)
Headaches (35-85%)
Visual blurring (50-60%)
Intolerance of bright lights
Parasthesias (numbness or tingling feelings) (30-50%)
Dizziness/ Lightheadedness (30-50%)
Ringing in the ears
Impaired cognition (50-85%)
Attentional difficulties
Calculation difficulties
Memory disturbance
Spatial disorientation
Saying the wrong word
3. Other Symptoms
Worsening of premenstrual symptoms (70% of women)
Nocturia (excessive urination during the night) (50-60%)
Tachycardia (abnormal rapid heart action) (40-50%)
Chest pain (25-40%)
Cough (30-40%)
Weight gain (50-70%)
Nausea, especially in earlier stages (50-60%)
Diarrhea, intestinal gas or irritable bowel (50%)
Intolerance of alcohol
Night sweats (30-50%)
Dry eyes (30-40%)
Dry mouth (30-40%)
Rash (30-40%)
Frequent cancer sores (30-40%)
Herpes simplex or shingles (20%)
Symptoms worsened by extremes in temperature
4. Less Common Symptoms
Mitral valve prolapse
Paralysis
Seizures
Blackouts
5. Psychological symptoms
Depression (reactive or secondary depression)
Anxiety (including panic attacks and personality changes)
Emotional lability (mood swings)
Psychosis

 Massachusetts ME/CFS & FM Association.

Cognitive
difficulties processing information
concentration problems
confusion
difficulties with word retrieval
word mix-ups
short-term memory difficulties
slowness in cognitive processes

Motor (movement) and balance
muscle weakness or paralysis
poor balance, ataxia & tandem gait
clumsiness & tendency to drop things
difficulty in tandem gait
atypical numbness or tingling

Sleep disruption
sleep disturbance – hypersomnia or insomnia
non-refreshing sleep

Visual and auditory[edit | edit source]
photophobia
visual changes or eye pain
double, blurred or wavy vision
dry or itchy eyes
tinnitus – buzzing or ringing in ears
hyperacusis & cocktail party phenomena

Neuropsychological
emotional flattening or personality change
loss of adaptability
anxiety &/or panic attacks
reactive depression
worsening of symptoms with stress

Immune system
new sensitivities to medications, chemicals
tender lymph nodes
recurrent sore throat
recurrent flu-like symptoms

Reproductive
dysmenorrhea
PMS or irregular menstrual cycles
loss of sexual libido or impotence

Respiratory (breathing)
exertional dyspnea (short of breath)
sinusitis
persistent cough & wheezing

Urinary
urinary frequencybladder dysfunction

Circulatory
neurally mediated hypotension
postural orthostatic tachycardia syndrome (POTS)
delayed orthostatic hypotension
dizziness/light-headedness
heart palpitations
fluid retention
extreme pallor
bruising

Digestive
lump in throat
nausea
heartburn
abdominal pain
irritable bowel syndrome

Neuroendocrine
loss of thermostatic stability – low body temperature or diurnal fluctuations
hot flushes
excessive sweating or night sweats
feelings of feverishness
feelings of cold extremities
heat/cold intolerance
anorexia or abnormal appetite
marked weight loss or gain
hair loss

Musculoskeletal
pain in muscles (myalgia)
muscle cramps, particularly in legs
chest pain and pressure
pain in multiple joints (arthalgia)
TMJ

Neurological (nervous system)
persistent fatigue
lack of endurance
migraines or new onset headaches
seizure-like phenomena

Sensory
hypersensitivity to pain
hyper-responsiveness to noxious stimuli
perceptual & dimensional distortions
feeling of burning or swelling
overload phenomena
loss of cognitive map

Canadian consensus criteria (CCC) symptom list

Bottom Line

The model that I use for ME/CFS is a microbiome dysfunction. On my citizen science site, we have found extremely strong associations of some symptoms with specific bacteria shifts.

Review those associations here:
http://microbiomeprescription.azurewebsites.net/Data/EurekaExplorer1