List of symptoms in ME CFS

From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history

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.[1]

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

Systemic Exertion Intolerance Disease (SEID) symptom list[edit | edit source]

These are the minimum of core symptoms necessary to be diagnosed with SEID, an ME/CFS criteria. Patients can have more symptoms[2] 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.[3]

Core symptoms[edit | edit source]


Pediatric[edit | edit source]

Pediatric cases have the same symptoms.[6] 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.[7] 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.[8]

Children, particularly adolescents, will more likely have an acute illness like the flu or mononucleosis as their onset.[7]

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.[9]

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]

Motor (movement) and balance[edit | edit source]

Sleep disruption[edit | edit source]

Visual and auditory[edit | edit source]

Neuropsychological[edit | edit source]

Immune system[edit | edit source]

Reproductive[edit | edit source]

Respiratory (breathing)[edit | edit source]

  • exertional dyspnea (short of breath)

Urinary[edit | edit source]

Circulatory[edit | edit source]

Digestive[edit | edit source]

  • lump in throat

Neuroendocrine[edit | edit source]

Musculoskeletal[edit | edit source]

Neurological (nervous system)[edit | edit source]

Sensory[edit | edit source]

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:

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

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[edit | edit source]

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[edit | edit source]

Neurosensory, Perceptual and Motor Disturbances[edit | edit source]

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[edit | edit source]

Susceptibility to viral infections with prolonged recovery periods.

Energy Metabolism/Ion Transportation[edit | edit source]

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.

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

See also[edit | edit source]

Learn more[edit | edit source]

References[edit | edit source]

  1. World Health Organization (1969). International Classification of Diseases (PDF). 2 (Eighth revision ed.). Geneva: World Health Organization. p. 173. Encephalomyelitis (chronic),
    (myalgic, benign) 323
  2. "5". Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. National Academy of Medicine. 2015. p. 141.
  3. "4 and 5". Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. National Academy of Medicine. 2015.
  4. Institute of Medicine (2015). "Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness - Diagnostic Algorithm".
  5. Institute of Medicine (2015). "Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - Redefining an Illness - Clinician's Guide" (PDF). National Academies.
  6. "6". Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. National Academies of Medicine. 2015. p. 181.
  7. 7.0 7.1 "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.
  8. Bell, David (June 25, 2016). "ME/CFS in Children - by David S. Bell, MD". Open Medicine Foundation. Retrieved August 11, 2018.
  9. 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.
  10. 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
  11. 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.
  12. 12.0 12.1 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