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[edit | edit source]

References[edit | edit source]

  1. 1.0 1.1 1.2 1.3 De Becker, P.; McGregor, N.; De Meirleir, K. (September 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 (January 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 3912876. PMID 24511456.
  3. 3.0 3.1 3.2 3.3 Crowhurst, Greg (February 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. ISSN 0029-6570. PMID 15727017.
  4. 4.0 4.1 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. 5.0 5.1 5.2 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 544348. PMID 15619332.
  6. 6.0 6.1 6.2 Bassett, Jodi (2012). "The comprehensive M.E. symptom list". The Hummingbirds' Foundation. Archived from the original on March 30, 2018. Retrieved October 7, 2018.
  7. 7.0 7.1 7.2 7.3 7.4 7.5 7.6 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. 8.0 8.1 8.2 "Invest in ME Research - UK Charity for Myalgic Encephalomyelitis What is ME?". Invest in ME Research. Retrieved October 16, 2018.
  9. "Symptoms - 25% M.E. Group". 25% M.E. Group. Retrieved October 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. (December 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". mesupport.co.uk. Retrieved October 16, 2018.
  15. Chaudhury, Suprakash (July 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