List of symptoms in ME CFS
Except for introduction information and SEID criteria symptoms, this page draws symptoms from subpages.
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.
Systemic Exertion Intolerance Disease (SEID) symptom list[edit | edit source]
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[edit | edit source]
- profound fatigue, and
- significant decrease in function, and
- symptoms last at least 6 months, and
- post-exertional malaise (PEM), and
- unrefreshing sleep, and
Pediatric[edit | edit source]
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.
Canadian consensus criteria (CCC) symptom list[edit | edit source]
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[edit | edit source]
- difficulties processing information
- concentration problems
- difficulties with word retrieval
- word mix-ups
- short-term memory difficulties
- slowness in cognitive processes
Motor (movement) and balance[edit | edit source]
- poor balance, ataxia & tandem gait
- clumsiness & tendency to drop things
- difficulty in tandem gait
- atypical numbness or tingling
Sleep disruption[edit | edit source]
Visual and auditory[edit | edit source]
- 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[edit | edit source]
- emotional flattening or personality change
- loss of adaptability
- anxiety &/or panic attacks
- reactive depression
- worsening of symptoms with stress
Immune system[edit | edit source]
- recurrent sore throat
- recurrent flu-like symptoms
Reproductive[edit | edit source]
- loss of sexual libido or impotence
Respiratory (breathing)[edit | edit source]
- exertional dyspnea (short of breath)
- persistent cough & wheezing
Urinary[edit | edit source]
Circulatory[edit | edit source]
- neurally mediated hypotension
- postural orthostatic tachycardia syndrome (POTS)
- delayed orthostatic hypotension
- heart palpitations
- fluid retention
- extreme pallor
Digestive[edit | edit source]
- lump in throat
Neuroendocrine[edit | edit source]
- 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[edit | edit source]
- pain in muscles (myalgia)
- muscle cramps, particularly in legs
- chest pain and pressure
Neurological (nervous system)[edit | edit source]
- persistent fatigue
Sensory[edit | edit source]
- hyper-responsiveness to noxious stimuli
- feeling of burning or swelling
- loss of cognitive map
International consensus criteria (ICC) symptom list[edit | edit source]
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)[edit | edit source]
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[edit | edit source]
Neurocognitive Impairments[edit | edit source]
Difficulty processing information: slowed thought, impaired concentration, e.g. confusion, disorientation, cognitive overload, difficulty with making decisions, slowed speech, acquired or exertional dyslexia
Pain[edit | edit source]
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[edit | edit source]
- 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[edit | edit source]
Immune, Gastro-intestinal and Genitourinary[edit | edit source]
- 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.
- 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[edit | edit source]
- 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[edit | edit source]
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.
See also[edit | edit source]
- Common symptoms
- Rare and uncommon symptoms
- Canadian Consensus Criteria
- International Consensus Criteria
- Institute of Medicine report
Learn more[edit | edit source]
- International Consensus Primer for medical practitioners
- IOM report - Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
- Canadian Consensus Criteria
References[edit | edit source]
- World Health Organization (1969). International Classification of Diseases (PDF). 2 (Eighth revision ed.). Geneva: World Health Organization. p. 173.
(myalgic, benign) 323
- "5". Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. National Academy of Medicine. 2015. p. 141.
- "4 and 5". Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. National Academy of Medicine. 2015.
- Institute of Medicine (2015). "Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness - Diagnostic Algorithm". nationalacademies.org.
- Institute of Medicine (2015). "Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - Redefining an Illness - Clinician's Guide" (PDF). National Academies.
- "6". Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. National Academies of Medicine. 2015. p. 181.
- "Symptoms and Diagnosis of ME/CFS in Children | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome". Centers for Disease Control and Prevention. January 18, 2019. Retrieved January 29, 2019.
- Bell, David (June 25, 2016). "ME/CFS in Children - by David S. Bell, MD". Open Medicine Foundation. Retrieved August 11, 2018.
- Carruthers, Bruce; van de Sande, Marjorie. "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Clinical Case Definition and Guidelines for Medical Practitioners - An Overview fo the Canadian Consensus Document" (PDF). Invest in ME Research. p. 4.
Physical or mental exertion often causes debilitating malaise and/or fatigue, generalized pain, deterioration of cognitive functions, and worsening of other symptoms that may occur immediately after activity or be delayed. Patients experience rapid muscle fatigue and lack endurance.
- Carruthers, Bruce M.; Jain, Anil Kumar; De Meirleir, Kenny L.; Peterson, Daniel L.; Klimas, Nancy G.; Lerner, A. Martin; Bested, Alison C.; Flor-Henry, Pierre; Joshi, Pradip; Powles, A C Peter; Sherkey, Jeffrey A.; van de Sande, Marjorie I. (2003), "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols" (PDF), Journal of Chronic Fatigue Syndrome, 11 (2): 7-115, doi:10.1300/J092v11n01_02
- Carruthers, Bruce M.; van de Sande, Marjorie I.; De Meirleir, Kenny L.; Klimas, Nancy G.; Broderick, Gordon; Mitchell, Terry; Staines, Donald; Powles, A.C. Peter; Speight, Nigel; Vallings, Rosamund; Bateman, Lucinda; Baumgarten-Austrheim, Barbara; Bell, David; Carlo-Stella, Nicoletta; Chia, John; Darragh, Austin; Jo, Daehyun; Lewis, Donald; Light, Alan; Marshall-Gradisnik, Sonya; Mena, Ismael; Mikovits, Judy; Miwa, Kunihisa; Murovska, Modra; Pall, Martin; Stevens, Staci (August 22, 2011). "Myalgic encephalomyelitis: International Consensus Criteria". Journal of Internal Medicine. 270 (4): 327–338. doi:10.1111/j.1365-2796.2011.02428.x. ISSN 0954-6820. PMC 3427890. PMID 21777306.
- Carruthers, BM; van de Sande, MI; De Meirleir, KL; Klimas, NG; Broderick, G; Mitchell, T; Staines, D; Powles, ACP; Speight, N; Vallings, R; Bateman, L; Bell, DS; Carlo-Stella, N; Chia, J; Darragh, A; Gerken, A; Jo, D; Lewis, DP; Light, AR; Light, KC; Marshall-Gradisnik, S; McLaren-Howard, J; Mena, I; Miwa, K; Murovska, M; Stevens, SR (2012), Myalgic encephalomyelitis: Adult & Paediatric: International Consensus Primer for Medical Practitioners (PDF), ISBN 978-0-9739335-3-6