List of symptoms in ME CFS

The list of symptoms in ME CFS can be extensive and most patients will not have every symptom possible.

A minimum list of core symptoms of chronic fatigue (CF); post-exertional malaise (PEM); unrefreshing sleep; cognitive impairment; and/or orthostatic intolerance (OI) can diagnose a person with Systemic Exertion Intolerance Disease (SEID), an ME/CFS definition. Other symptoms can be present but a diagnosis of the SEID criterion for ME/CFS requires less symptoms than the Canadian Consensus Criteria (CCC) or the International Consensus Criteria (ICC). The CCC is another ME/CFS definition which includes the core symptoms and neurological, autonomic, neuroendocrine, and immune symptoms, and myalgia to meet its diagnostic criteria. The ICC is for diagnosing the neurological disease myalgic encephalomyelitis (ME) which was defined by the World Health Organization (WHO) in 1969.

It includes the core symptoms and neurological, immune/gastrointestinal/genitourinary impairment, and energy metabolism/ion transport impairment.

Systemic Exertion Intolerance Disease (SEID) symptom list

These are the minimum of core symptoms necessary to be diagnosed with SEID, an ME/CFS criteria. Patients can have more symptoms and they are outlined in the Institute of Medicine report.

These core symptoms are also part of the CCC and ICC criteria below. However, the CCC lists PEM as optional with Post-exertional fatigue. ICC refers to PEM as Postexertional neuroimmune exhaustion (PENE) and instead of CF the term "lack of stamina" is used. ME/CFS and ME patients will always have the core symptoms and the SEID diagnostic criteria can be used to diagnose these patients also. However, the SEID diagnostic criteria cannot speak to the number of symptoms and their severity all ME/CFS and ME patients experience. The IOM report authors who created the SEID diagnostic criteria did include some additional symptoms in chapters 4 and 5.

Core symptoms

• profound fatigue, and
• significant decrease in function, and
• symptoms last at least 6 months, and
• post-exertional malaise (PEM), and
• unrefreshing sleep, and

either

• cognitive impairment

or

• orthostatic intolerance (OI)

Pediatric

Pediatric cases have the same symptoms. However, the CDC notes some differences: orthostatic intolerance (causing dizziness and lightheadedness) is experienced more often, making their other ME/CFS symptoms worse. Sleep problems may be harder to detect; they will experience insomnia, daytime sleepiness, and intense and vidid dreaming. Children and adolescents do not usually have muscle and joint pain but headaches and stomach pain are more common. Dr. David Bell agrees the symptoms for children can be different noting abdominal pain is more common and in teens there can be facial flushing. Although children do not describe having PEM, a hallmark symptom used in diagnosing ME/CFS, they can experience a relapse from exertion, perhaps from just taking the school bus, having to spend prolonged periods in bed.

Children, particularly adolescents, will more likely have an acute illness like the flu or mononucleosis as their onset.

Canadian consensus criteria (CCC) symptom list

The Canadian Consensus Criteria (CCC), an ME/CFS criteria, includes a list of recognized signs and symptoms in the appendix. Only some of these symptoms within the categories below are needed to be diagnosed under the Canadian Consensus Criteria diagnostic criteria. PEM is an and/or option with post-exertional fatigue.

Children and adolescents will have the same symptoms; but the typical presentation of Pediatric Systemic Exertion Intolerance Disease (SEID) is different.

Cognitive

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

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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

• 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 frequency, bladder 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

• Altered sense of taste and/or smell
  
  

International consensus criteria (ICC) symptom list

The International Consensus Criteria (ICC) will diagnose myalgic encephalomyelitis (ME). Not every symptom listed is necessary to diagnose ME but having symptoms within categories is necessary. The ICC refers to "lack of stamina" instead of chronic fatigue.

Post-exertional Neuroimmune Exhaustion (PENE)

Similar to Post-Exertional Malaise, but more clearly and strictly defined. This cardinal feature is a pathological inability to produce sufficient energy on demand with prominent symptoms primarily in the neuroimmune regions. Characteristics are:

• Marked, rapid physical and/or cognitive fatigability in response to exertion, which may be minimal such as activities of daily living or simple mental tasks, can be debilitating and cause a relapse.
• Post-exertional symptom exacerbation: e.g. acute flu-like symptoms, pain and worsening of other symptoms.
• Post-exertional exhaustion may occur immediately after activity or be delayed by hours or days.
• Recovery period is prolonged, usually taking 24 hours or longer. A relapse can last days, weeks or longer.
• Low threshold of physical and mental fatigability (lack of stamina) results in a substantial reduction in pre-illness activity level.

  ---

Neurological

Neurocognitive Impairments

Difficulty processing information: slowed thought, impaired concentration, e.g. confusion, disorientation, cognitive overload, difficulty with making decisions, slowed speech, acquired or exertional dyslexia

Short-term memory loss: e.g. difficulty remembering what one wanted to say, what one was saying, retrieving words, recalling information, poor working memory

Pain

Headaches: e.g. chronic, generalized headaches often involve aching of the eyes, behind the eyes or back of the head that may be associated with cervical muscle tension; migraine; tension headaches

Significant pain can be experienced in muscles, muscle-tendon junctions, joints, abdomen or chest. It is non-inflammatory in nature and often migrates. e.g. generalized hyperalgesia, widespread pain (may meet fibromyalgia criteria), myofascial or radiating pain

Sleep disturbances

• Disturbed sleep patterns: e.g. insomnia, prolonged sleep including naps, sleeping most of the day and being awake most of the night, frequent awakenings, awaking much earlier than before illness onset, vivid dreams/nightmares.
• Unrefreshed sleep: e.g. awaken feeling exhausted regardless of duration of sleep, day-time sleepiness.

Neurosensory, Perceptual and Motor Disturbances

Neurosensory and perceptual: e.g. inability to focus vision, sensitivity to light, noise, vibration, odor sensitivities, taste and touch; impaired depth perception.

Motor: e.g. muscle weakness, twitching, poor coordination, feeling unsteady on feet, ataxia.

---

Immune, Gastro-intestinal and Genitourinary

• Flu-like symptoms may be recurrent or chronic and typically activate or worsen with exertion: e.g. sore throat, sinusitis, cervical and/or axillary lymph nodes may enlarge or be tender on palpitation.

Susceptibility to viral infections with prolonged recovery periods.

• Gastro-intestinal tract: e.g. nausea, abdominal pain, bloating, irritable bowel syndrome (IBS).
• Genitourinary: e.g. urinary urgency or frequency, nocturia.
• Sensitivities to food, medications, odors or chemicals.

  ---

Energy Metabolism/Ion Transportation

• Cardiovascular e.g. inability to tolerate an upright position - orthostatic intolerance (OI), neurally mediated hypotension (NMH), postural orthostatic tachycardia syndrome (POTS), heart palpitations with or without cardiac arrhythmias, light-headedness/dizziness.
• Respiratory e.g. air hunger, laboured breathing, fatigue of chest wall muscles.
• Loss of thermostatic stability: e.g. subnormal body temperature, marked diurnal fluctuation; sweating episodes, recurrent feelings of feverishness with or without low grade fever, cold extremities.
• Intolerance of extremes of tempurature.

  ---

Children's symptoms

Symptoms may progress more slowly in children than in teenagers or adults. In addition to post-exertional neuroimmune exhaustion, the most prominent symptoms tend to be neurological: headaches, cognitive impairments, and sleep disturbances.

• Headaches: Severe or chronic headaches are often debilitating. Migraine may be accompanied by a rapid drop in temperature, shaking, vomiting, diarrhoea and severe weakness.
• Neurocognitive Impairments: Difficulty focusing eyes and reading are common. Children may become dyslexic, which may only be evident when fatigued. Slow processing of information makes it difficult to follow auditory instructions or take notes. All cognitive impairments worsen with physical or mental exertion. Young people will not be able to maintain a full school program.
• Pain may seem erratic and migrate quickly. Joint hypermobility is common.

Note: Fluctuation and severity hierarchy of numerous prominent symptoms tend to vary rapidly and dramatically.

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See also

• Common symptoms
• Rare and uncommon symptoms
• Canadian Consensus Criteria
• International Consensus Criteria
• Institute of Medicine report

Learn more

• International Consensus Primer for medical practitioners
• IOM report - Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
• Canadian Consensus Criteria

References

systemic exertion intolerance disease (SEID) - A term for ME/CFS that aims to avoid the stigma associated with the term "chronic fatigue syndrome", while emphasizing the defining characteristic of post-exertional malaise (PEM). SEID was defined as part of the diagnostic criteria put together by the Institute of Medicine (IOM) report of 10 February 2015.

See systemic exertion intolerance disease.

See myalgic encephalomyelitis.

See chronic fatigue syndrome.

chronic fatigue (CF) - Persistent and abnormal fatigue is a symptom, not an illness. It may be caused by depression, multiple sclerosis, fibromyalgia, chronic fatigue syndrome or many other illnesses. The term "chronic fatigue" should never be confused with the disease chronic fatigue syndrome.

post-exertional malaise (PEM) - A notable exacerbation of symptoms brought on by small physical or cognitive exertions. PEM may be referred to as a "crash" or "collapse" and can last for days or weeks. Symptoms can include cognitive impairments, muscle pain, trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, and others.

See post-exertional malaise.

orthostatic intolerance (OI) - The development of symptoms when standing upright, where symptoms are relieved upon reclining. Patients with orthostatic intolerance have trouble remaining upright for more than a few seconds or a few minutes, depending upon severity. In severe orthostatic intolerance, patients may not be able to sit upright in bed. Orthostatic intolerance is often a sign of dysautonomia. There are different types of orthostatic intolerance, including postural orthostatic tachycardia syndrome (POTS).

See Canadian consensus criteria.

Canadian Consensus Criteria (CCC) - A set of diagnostic criteria used to diagnose ME/CFS, developed by a group of practicing ME/CFS clinicians in 2003. The CCC is often considered to be the most complex criteria, but possibly the most accurate, with the lowest number of patients meeting the criteria. Led to the development of the International Consensus Criteria (ICC) in 2011.

International Consensus Criteria (ICC) - A set of diagnostic criteria, based on the Canadian Consensus Criteria, that argued for the abandonment of the term "chronic fatigue syndrome" and encouraged the sole use of the term "myalgic encephalomyelitis".

See International Consensus Criteria.

World Health Organization (WHO) - "A specialized agency of the United Nations that is concerned with public health. It was established on 7 April 1948, and is headquartered in Geneva, Switzerland. The WHO is a member of the United Nations Development Group. Its predecessor, the Health Organization, was an agency of the League of Nations." The International Statistical Classification of Diseases and Related Health Problems (ICD) is maintained by WHO.

See World Health Organization.

systemic exertion intolerance disease (SEID) - A term for ME/CFS that aims to avoid the stigma associated with the term "chronic fatigue syndrome", while emphasizing the defining characteristic of post-exertional malaise (PEM). SEID was defined as part of the diagnostic criteria put together by the Institute of Medicine (IOM) report of 10 February 2015.

post-exertional neuroimmune exhaustion (PENE) - An alternative term for post-exertional malaise (PEM), used by people who find that the word 'malaise' fails to capture the serious nature of the condition. Used in the Institute of Medicine (IOM) report.

See post-exertional neuroimmune exhaustion.

Institute of Medicine report (IOM report) - A report that was commissioned by the U.S. government and was published by the Institute of Medicine on February 10, 2015. The report was titled "Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness" and proposed the term Systemic Exertion Intolerance Disease (SEID). Among its key findings were that "This disease is characterized by profound fatigue, cognitive dysfunction, sleep abnormalities, autonomic manifestations, pain, and other symptoms that are made worse by exertion of any sort." The report further stated "Between 836,000 and 2.5 million Americans suffer from myalgic encephalomyelitis/chronic fatigue syndrome."

Centers for Disease Control and Prevention (CDC) - The Centers for Disease Control and Prevention is a U.S. government agency dedicated to epidemiology and public health. It operates under the auspices of the Department of Health and Human Services.

See Centers for Disease Control and Prevention.

the condition of being dizzy or on the verge of fainting

lightheadedness the condition of being dizzy or on the verge of fainting

Canadian Consensus Criteria (CCC) - A set of diagnostic criteria used to diagnose ME/CFS, developed by a group of practicing ME/CFS clinicians in 2003. The CCC is often considered to be the most complex criteria, but possibly the most accurate, with the lowest number of patients meeting the criteria. Led to the development of the International Consensus Criteria (ICC) in 2011.

cognition Thought processes, including attention, reasoning, and memory.

See postural orthostatic tachycardia syndrome.

postural orthostatic tachycardia syndrome (POTS) - A form of orthostatic intolerance where the cardinal symptom is excessive tachycardia due to changing position (e.g. from lying down to sitting up).

International Consensus Criteria (ICC) - A set of diagnostic criteria, based on the Canadian Consensus Criteria, that argued for the abandonment of the term "chronic fatigue syndrome" and encouraged the sole use of the term "myalgic encephalomyelitis".

post-exertional neuroimmune exhaustion (PENE) - An alternative term for post-exertional malaise (PEM), used by people who find that the word 'malaise' fails to capture the serious nature of the condition. Used in the Institute of Medicine (IOM) report.

urination at night especially when excessive

nocturia urination at night especially when excessive

myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

cognition Thought processes, including attention, reasoning, and memory.