Fluctuating illness

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A fluctuating illness is one in which either symptoms or the course of the illness varies in severity or impact over time. Symptoms in a fluctuating illness may "wax and wane" within a period of time,[1] whether the course of the illness has a relapsing-remitting pattern or not. Many chronic illnesses are fluctuating illnesses, in which a person's level of disability varies.[2]

ME/CFS[edit | edit source]

The CDC describes ME/CFS as a fluctuating illness, with post-exertional malaise (PEM) causing patients to disabling have "crashes" or "relapses" after exertion. Doctors, nurses and other healthcare providers are warned that:

"The severity and frequency of the symptoms can vary among patients and can vary for an individual patient. Symptoms can fluctuate during the day, from day to day, and throughout the illness. Some patients may not be obviously ill-appearing during clinical evaluations. However, if patients are severely affected or are having an exacerbation of their symptoms, even visiting a clinic for care might not be feasible at times. Thus, healthcare providers may not see patients when their symptoms are most severe."[3]

Fluctuating symptoms[edit | edit source]

ME/CFS is frequently described as a fluctuating illness,[4], or as a serious illness with symptoms that can fluctuate in severity and hierachy from day to day or even from hour to hour.[5][6][3]

Fluctuating illness course[edit | edit source]

Chu et al. (2019) investigated prognosis in ME/CFS patients are found that patients generally had one of several courses of illness:

  • 4% constantly improving
  • 8% persisting/little change in symptoms
  • 7% relapsing-remitting (all symptoms might disappear for a time only to return)
  • 59% fluctuating (symptoms always present)
  • 14% constantly worsening
  • 7% other pattern[7]

Remissions[edit | edit source]

Chu's study found that 13% of the ME/CFS patients had experienced one or more remission (i.e., period of time with no symptoms) lasting a month. The average remission lasted 7 months and the longest was 2 years.[7]

Diagnostic criteria[edit | edit source]

In the London criteria for myalgic encephalomyelitis, fluctating symptoms are one of the five compulsory disagnostic criteria]:

"Fluctuation of symptoms, from hour to hour and day to day"[8]

The International Consensus Criteria states:

"There may be marked fluctuation of symptom severity and hierarchy from day to day or hour to hour. Consider activity, context and interactive effects."[5]

The ICC also states that in ME "prominent symptoms tend to vary rapidly and dramatically."[5]

Severe ME[edit | edit source]

A small study of severe ME/CFS described symptoms as fluctuating and unpredictable, with severe and very severe ME having severe symptoms ever day, and only some patient having very brief moments in which they could do "normal activities":

"At best, energy fluctuations allow individuals to experience only fleeting moments of "normal". For example, Jane stated she was active for 2% of the day when she washed and toileted, whereas Lorraine was completely bedbound and dependent on assistance just to sit up in bed."[9]

Possible causes of fluctations[edit | edit source]

Tate et al. (2018) states fluctuations in ME/CFS symptoms may result from neuroinflammation: "'Inflammatory marker' studies, including magnetic resonance imaging (MRI) pre- and post-exercise studies, support the concept that symptom severities likely 'wax and wane' in tandem with fluctuating levels of chronic neuroinflammation in the brains and CNS of ME/CFS patients, and this is an important feature of this paradigm."[10]

People with ME/CFS generally have a blunted rise in heart rate as activity increases in intensity during (as shown during cardiopulmonary exercise testing), which worsens with post-exertional malaise. This suggests cardiac autonomic dysregulation, which may cause fluctuating symptoms.[1]

A "boom and bust" cycle of overactivity (on better days) then less far activity (due to crashing caused by post-exertional malaise) also leads to large fluctuations in symptoms. Activity pacing is often suggested to address this.[1]

Notable articles[edit | edit source]

We Already Know Enough to Avoid Making the Same Mistakes Again With Long COVID[1] - (Blog, Full text)

  • 2021, Exploring Symptom Fluctuations and Triggers in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Using Novel Patient-Centred N-of-1 Observational Designs: A Protocol for a Feasibility and Acceptability Study[11](Abstract)
"This study will assess the feasibility and acceptability of patient-centred N-of-1 observational studies to assess diseases with complex presentations such as ME/CFS, as well as provide individual-level evidence about fluctuations and triggers of ME/CFS symptoms that may aid self-management."
  • 2019, Onset patterns and course of myalgic encephalomyelitis/chronic fatigue syndrome[7](Full text)
  • 2018, Adolescent's descriptions of fatigue, fluctuation and payback in chronic fatigue syndrome/myalgic encephalopathy (CFS/ME): interviews with adolescents and parents[12] - (Full text)
  • 2011, Symptom fluctuations and daily physical activity in patients with chronic fatigue syndrome: a case-control study[13] - (Full text)

See also[edit | edit source]

Learn more[edit | edit source]

References[edit | edit source]

  1. 1.01.11.21.3 Davenport, Todd; Stevens, Staci R.; Snell, Christopher R.; Van Ness, J. Mark (2021). "We Already Know Enough to Avoid Making the Same Mistakes Again With Long COVID". Journal of Orthopaedic and Sports Physical Therapy Blog. doi:10.2519/jospt.blog.20210310/full/. Retrieved April 3, 2022.
  2. Wendell, Susan (2013). "Unhealthy Disabled: Treating Chronic Illnesses as Disabilities". In Davis, Lennard J. (ed.). The Disability Studies Reader (4th ed.). Routledge. pp. 161–173. ISBN 978-0-415-63052-8. Cite has empty unknown parameter: |editor1link= (help)
  3. 3.03.1 Centers for Disease Control and Prevention (November 19, 2019). "Presentation and Clinical Course of ME/CFS | Information for Healthcare Providers | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome ME/CFS". Centers for Disease Control and Prevention. Retrieved April 3, 2022.
  4. Rowe, Peter C.; Underhill, Rosemary A.; Friedman, Kenneth J.; Gurwitt, Alan; Medow, Marvin S.; Schwartz, Malcolm S.; Speight, Nigel; Stewart, Julian M.; Vallings, Rosamund; Rowe, Katherine (2017). "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer". Frontiers in Pediatrics. 5: 121. doi:10.3389/fped.2017.00121. ISSN 2296-2360. Symptoms often fluctuate significantly during the day and from day-to-day.
  5. 5.05.15.2 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
  6. International Association for Chronic Fatigue Syndrome / Myalgic Encephalomyelitis; Friedberg, Fred; Bateman, Lucinda; Bested, Alison C; Davenport, Todd; Friedman, Kenneth J; Gurwitt, Alan R; Jason, Leonard A; Lapp, Charles W; Stevens, Staci R; Underhill, Rosemary A; Vallings, Rosamund (2014), Chronic Fatigue Syndrome Myalgic Encephalomyelitis Primer for Clinical Practitioners (PDF), Chicago, USA: International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, The illness can vary from mild to severe, with symptoms that may fluctuate significantly from hour to hour and day to day.
  7. 7.07.17.2 Chu, Lily; Valencia, Ian J.; Garvert, Donn W.; Montoya, Jose G. (February 5, 2019). "Onset Patterns and Course of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome". Frontiers in Pediatrics. 7 (12). doi:10.3389/fped.2019.00012.
  8. Howes, Sandra; Goudsmit, Ellen M.; Shepherd, Charles (October 15, 2014), Myalgic Encephalomyelitis (ME). Criteria and clinical guidelines. 2014, archived from the original on September 23, 2015
  9. Strassheim, Victoria; Newton, Julia L.; Collins, Tracy (February 5, 2021). "Experiences of Living with Severe Chronic Fatigue Syndrome/Myalgic Encephalomyelitis". Healthcare. 9 (2): 168. doi:10.3390/healthcare9020168. ISSN 2227-9032. PMC 7914910. PMID 33562474.
  10. Mackay, Angus; Tate, Warren P. (December 2018). "A compromised paraventricular nucleus within a dysfunctional hypothalamus: A novel neuroinflammatory paradigm for ME/CFS". International Journal of Immunopathology and Pharmacology. doi:10.1177/2058738418812342.
  11. McDonald, Suzanne; Tan, Samuel X.; Banu, Shamima; van Driel, Mieke; McGree, James M.; Mitchell, Geoffrey; Nikles, Jane (March 1, 2022). "Exploring Symptom Fluctuations and Triggers in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Using Novel Patient-Centred N-of-1 Observational Designs: A Protocol for a Feasibility and Acceptability Study". The Patient - Patient-Centered Outcomes Research. 15 (2): 197–206. doi:10.1007/s40271-021-00540-0. ISSN 1178-1661.
  12. Parslow, Roxanne M; Anderson, Nina; Byrne, Danielle; Shaw, Alison; Haywood, Kirstie L; Crawley, Esther (December 4, 2018). "Adolescent's descriptions of fatigue, fluctuation and payback in chronic fatigue syndrome/myalgic encephalopathy (CFS/ME): interviews with adolescents and parents". BMJ Paediatrics Open. 2 (1): e000281. doi:10.1136/bmjpo-2018-000281. ISSN 2399-9772. PMC 6307594. PMID 30613800.
  13. Meeus, Mira; Eupen, Inge van; Baarle, Ellen van; Boeck, Valérie De; Luyckx, Anke; Kos, Daphne; Nijs, Jo (November 1, 2011). "Symptom Fluctuations and Daily Physical Activity in Patients With Chronic Fatigue Syndrome: A Case-Control Study". Archives of Physical Medicine and Rehabilitation. 92 (11): 1820–1826. doi:10.1016/j.apmr.2011.06.023. ISSN 0003-9993.

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.

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".

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.

myalgic encephalopathy An alternate term that is sometimes used for myalgic encephalomyelitis, by people who believe the evidence for inflammation in ME is insufficient. This terminology reflects the belief that the "-itis" suffix implies inflammation.

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.

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.

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.

BMJ The BMJ (previously the British Medical Journal) is a weekly peer-reviewed medical journal.

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.