Rare and uncommon symptoms

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Rare and uncommon symptoms of myalgic encephalomyelitis (ME) are those not listed the diagnostic criteria, and are more likely to occur or more likely to be problematic in people with severe or very severe ME.[1][2]

Rare symptoms that can be particularly problematic include:

Sensory problems[edit | edit source]

Sensory problems including noise and light sensitivity (tinnitus, hyperacusis, severe photophobia) are relatively common but may be undercognised; the most commonly used diagnostic criteria do not include any sensory symptoms.[11][12][8][7][7]

Symptom recognition[edit | edit source]

Paralysis[edit | edit source]

Paralysis is recognized under Motor and Balance symptoms in the Canadian Consensus Criteria (CCC) (Appendix 4). Chewing and swallowing difficulties. Paralysis is not recognized in the International Consensus Criteria, (ICC) but the ion transport and channelopathy impairments that cause it are mentioned in the pathophysiology section, and the response to exercise section.[4]

Chewing and swallowing problems[edit | edit source]

Chewing and swallowing problems are sometimes caused by paralysis, especially facial paralysis. Some patients are too weak to chew, eat or digest food normally and need a feeding tube.[13][6] Problems with fine motor control of the hands can also affect eating.[3][14]

Nocturnal diarrhea[edit | edit source]

Nightime diarrhea and delayed emptying of the upper gastricintestinal tract were found in some CFS patients, although vomiting was much rarer in the same study.[5] Difficulties with bladder or bowel control have also been identified.[8]

Seizure-like symptoms[edit | edit source]

Seizure-like symptoms are described as resulting from hypersensitivity to even low levels of a stimulus (to light, noise, chemicals, etc).[15] Seizure-like symptoms are included in the Nervous System symptoms in the Canadian Consensus Criteria (Appendix 4).[7]:102-103

Prevalence[edit | edit source]

Symptom Prevalence % International Criteria Canadian Criteria Fukuda criteria Rare
paralysis no yes no yes
Sight loss - partial or complete (amaurosis) 15.5 no - motor disturbances recognized no - visual changes only no yes
visible muscle wasting no no no yes
sleeping all day/awake all night (also reversal) 14 yes yes no yes
fainting (syncope) 14.9 no no no yes
seizure-like symptoms no yes no yes
hyperacusis (severe noise severe) yes, neurosensory yes no no
severe photophobia (severe light sensitivity) 70-76%[1][7]:101 yes, neurosensory yes no no
tinnitus 52-58%[1][7]:101 no no no no

Notable studies[edit | edit source]

Castro-Marrero et al. 2017[edit | edit source]

Comorbidity in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: A Nationwide Population-Based Cohort Study[16]

  • 1757 Spanish subjects who met both the 1994 CDC/Fukuda definition and Canadian Consensus Criteria for CFS/ME. Table 2 gives prevelance of each ME/CFS symptom in the Canadian Consensus Criteria

Jason et. al 2014[edit | edit source]

Examining case definition criteria for chronic fatigue syndrome and myalgic encephalomyelitis

  • 236 patients completed the DePaul Symptom Questionnaire, rating the frequency and severity of 54 symptoms, compared to controls.

de Becker et al. 2010[edit | edit source]

A definition-based analysis of symptoms in a large cohort of patients with chronic fatigue syndrome

  • A study of 2073 patients complaining of chronic fatigue (CF) in Brussels. Table 1 and Table 2 show the how many patients had each symptom according to whether they met the Fukuda criteria, the Holmes criteria or had chronic fatigue without CFS.

1578 CFS patients fulfilled the Fukuda criteria (called the "CFS group") and 951 (60.3% of the CFS group) fulfilled the Holmes criteria. The Holmes definition was found to be better than the Fukuda at differentiated CFS patients from the patients with Chronic Fatigue without CFS.

See also[edit | edit source]

Learn more[edit | edit source]

References[edit | edit source]

  1. 1.01.11.21.3 De Becker, P.; McGregor, N.; De Meirleir, K. (Sep 15, 2001). "A definition-based analysis of symptoms in a large cohort of patients with chronic fatigue syndrome". Journal of Internal Medicine. 250 (3): 234–240. doi:10.1046/j.1365-2796.2001.00890.x. ISSN 0954-6820. 
  2. Jason, Leonard A.; Sunnquist, Madison; Brown, Abigail; Evans, Meredyth; Vernon, Suzanne D.; Furst, Jacob; Simonis, Valerie (Jan 1, 2014). "Examining case definition criteria for chronic fatigue syndrome and myalgic encephalomyelitis". Fatigue: biomedicine, health & behavior. 2 (1): 40–56. doi:10.1080/21641846.2013.862993. ISSN 2164-1846. PMC 3912876Freely accessible. PMID 24511456. 
  3. 3.03.13.23.3 Crowhurst, Greg (Feb 28, 2005). "Supporting people with severe myalgic encephalomyelitis" (PDF). Nursing Standard (Royal College of Nursing (Great Britain): 1987). 19 (21): 38–43. doi:10.7748/ns2005.02.19.21.38.c3796. ISSN 0029-6570. PMID 15727017. 
  4. 4.04.1 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 
  5. 5.05.15.2 Burnet, Richard B; Chatterton, Barry E (December 2004). "Gastric emptying is slow in chronic fatigue syndrome". BMC Gastroenterology. 4 (1). doi:10.1186/1471-230x-4-32. ISSN 1471-230X. PMC 544348Freely accessible. PMID 15619332. 
  6. 6.06.16.2 Bassett, Jodi (2012). "The comprehensive M.E. symptom list". The Hummingbirds' Foundation. Archived from the original on Mar 30, 2018. Retrieved Oct 7, 2018. 
  7. 7.07.17.27.37.47.57.6 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 (May 2002). "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Clinical Working Case Definition, Diagnostic and Treatment Protocols" (PDF). Journal of Chronic Fatigue Syndrome. 11 (1): 7–115. doi:10.1300/j092v11n01_02. ISSN 1057-3321. 
  8. 8.08.18.2 "Invest in ME Research - UK Charity for Myalgic Encephalomyelitis What is ME?". www.investinme.org. Retrieved Oct 16, 2018. 
  9. "Symptoms - 25% M.E. Group". 25% M.E. Group. Retrieved Oct 7, 2018. 
  10. Amano, Keiko; Yanagihori, Ryoko; Tei, Chuwa (May 13, 2015). "Waon Therapy is Effective as the Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome". The Journal of The Japanese Society of Balneology, Climatology and Physical Medicine. 78 (3). doi:10.11390/onki.78.285. ISSN 0029-0343. 
  11. Fukuda, K.; Straus, S. E.; Hickie, I.; Sharpe, M. C.; Dobbins, J. G.; Komaroff, A. (Dec 15, 1994). "The chronic fatigue syndrome: a comprehensive approach to its definition and study. International Chronic Fatigue Syndrome Study Group" (PDF). Annals of Internal Medicine. American College of Physicians. 121 (12): 953–959. ISSN 0003-4819. PMID 7978722. 
  12. https://www.cdc.gov/me-cfs/symptoms-diagnosis/symptoms.html
  13. Hanson, Maureen R.; Giloteaux, Ludovic (2017). "The gut microbiome in Myalgic Encephalomyelitis" (PDF). Biochemist. 39 (2): 10–13. 
  14. Sargent, Louise. "The Symptoms of Myalgic Encephalomyelitis - M.E. Support". www.mesupport.co.uk. Retrieved Oct 16, 2018. 
  15. Chaudhury, Suprakash (Jul 1, 2014). "Cognitive impairments in chronic fatigue syndrome". Medical Journal of Dr. D.Y. Patil University. 7 (4). 
  16. https://www.sciencedirect.com/science/article/pii/S0033318217301184

myalgic encephalomyelitis (ME) - 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.

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".

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.

Fukuda criteria - The most commonly used diagnostic criteria for chronic fatigue syndrome, created by the United States Centers for Disease Control (CDC).

syncope - A medical term for fainting. A loss of consciousness resulting from insufficient blood flow to the brain.

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.

ME/CFS - An acronym that combines myalgic encephalomyelitis with chronic fatigue syndrome. Sometimes they are combined because people have trouble distinguishing one from the other. Sometimes they are combined because people see them as synonyms of each other.

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.

chronic fatigue syndrome (CFS) - A fatigue-based illness. The term CFS was invented invented by the U.S. Centers for Disease Control as an replacement for myalgic encephalomyelitis (ME). Some view CFS as a neurological disease, others use the term for any unexplained long-term fatigue. Sometimes used as a the term as a synonym of myalgic encephalomyelitis, despite the different diagnostic criteria.

Action for ME (AfME) - Action for ME is a British non-profit organization that was set up in 1987 as The M.E. Action Campaign. Its founders were Martin Lev, Sue Findlay and Clare Francis. In September 1993 it changed its name and logo to Action for ME and Chronic Fatigue. It then changed its name in 1993 to Action for ME.

myalgic encephalomyelitis (ME) - 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.

chronic fatigue syndrome (CFS) - A fatigue-based illness. The term CFS was invented invented by the U.S. Centers for Disease Control as an replacement for myalgic encephalomyelitis (ME). Some view CFS as a neurological disease, others use the term for any unexplained long-term fatigue. Sometimes used as a the term as a synonym of myalgic encephalomyelitis, despite the different diagnostic criteria.

The information provided at this site is not intended to diagnose or treat any illness.
From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history.