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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,<ref name="Davenport2021"/> whether the course of the illness has a relapsing-remitting pattern or not. Many [[chronic illness]]es are fluctuating illnesses, in which a person's level of disability varies.<ref name="UnhealthyDisabled">{{Cite book | title = The Disability Studies Reader|trans-title=|chapter=Unhealthy Disabled: Treating Chronic Illnesses as Disabilities| date = 2013 | publisher = Routledge|location=|isbn=978-0-415-63052-8|edition=4th|volume=|language=en | url =|chapter-url=https://books.google.co.uk/books?hl=en&lr=&id=Oor7avo2iDkC&pg=PA161#v=onepage&q&f=false | pages = 161-173|editor-last = Davis|editor-first = Lennard J.| editor1-link = | last = Wendell | first = Susan | author-link = |veditors=|others=|quote=}}</ref><br> ==ME/CFS== The [[Centers for Disease Control and Prevention|CDC]] describes ME/CFS as a fluctuating illness, with [[post-exertional malaise]] (PEM) causing patients to disabling have [[crash|"crashes" or "relapses"]] after exertion. Doctors, nurses and other healthcare providers are warned that: <blockquote>"'''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."<ref name="CDC-clinicians">{{Cite web | url = https://www.cdc.gov/me-cfs/healthcare-providers/presentation-clinical-course/index.html | title = Presentation and Clinical Course of ME/CFS {{!}} Information for Healthcare Providers {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome ME/CFS | last = Centers for Disease Control and Prevention | first = |website=[[Centers for Disease Control and Prevention]] | date = 2019-11-19|language=en-us|archive-url=|archive-date=|url-status=|access-date=2022-04-03}}</ref></blockquote> ===Fluctuating symptoms=== [[ME/CFS]] is frequently described as a '''fluctuating illness''',<ref name="Rowe2017">{{Cite journal | last = Rowe | first = Peter C. | authorlink = Peter Rowe | last2 = Underhill | first2 = Rosemary A. | authorlink2 = Rosemary Underhill | last3 = Friedman | first3 = Kenneth J. | authorlink3 = Kenneth Friedman | last4 = Gurwitt | first4 = Alan | authorlink4 = Alan Gurwitt | first5 = Marvin S. | last5 = Medow | authorlink5 = Marvin Medow | last6 = Schwartz | first6 = Malcolm S. | authorlink6 = Malcolm Schwartz | last7 = Speight | first7 = Nigel | author-link8 = Nigel Speight | last8 = Stewart | first8 = Julian M. | author-link8 = Julian Stewart | last9 = Vallings | first9 = Rosamund | author-link9 = Rosamund Vallings | last10 = Rowe | first10 = Katherine | authorlink10=Katherine Rowe | date = 2017 | title=Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer |url =https://www.frontiersin.org/articles/10.3389/fped.2017.00121/full|journal=Frontiers in Pediatrics|language=English|volume=5 | pages = 121|doi=10.3389/fped.2017.00121|issn=2296-2360|quote=Symptoms often fluctuate significantly during the day and from day-to-day.}}</ref>, or as a serious illness with '''symptoms that can fluctuate''' in severity and hierachy from day to day or even from hour to hour.<ref name="ICC2011primer"/><ref name="Primer2014">{{Citation | date = 2014 | url=https://www.massmecfs.org/images/pdf/Primer_2014.pdf | title=Chronic Fatigue Syndrome Myalgic Encephalomyelitis Primer for Clinical Practitioners | last1 = ((International Association for Chronic Fatigue Syndrome / Myalgic Encephalomyelitis)) | author-link = International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis | last2 = Friedberg | first2 = Fred | authorlink2 = Fred Friedberg | last3 = Bateman | first3 = Lucinda | authorlink3 = Lucinda Bateman | last4 = Bested | first4 = Alison C | authorlink4 = Alison Bested | last5 = Davenport | first5 = Todd | authorlink5 = Todd Davenport | last6 = Friedman | first6 = Kenneth J | authorlink6 = Kenneth Friedman | last7 = Gurwitt | first7 = Alan R | author-link8 = Alan Gurwitt | last8 = Jason | first8 = Leonard A | author-link8 = Leonard Jason | last9 = Lapp | first9 = Charles W | author-link9 = Charles Lapp | last10 = Stevens | first10 = Staci R | authorlink10 = Staci Stevens | last11 = Underhill | first11 = Rosemary A | authorlink11 = Rosemary Underhill | last12 = Vallings | first12 = Rosamund | authorlink12 = Rosamund Vallings|location=Chicago, USA| publisher = International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis |quote=The illness can vary from mild to severe, with symptoms that may fluctuate significantly from hour to hour and day to day.}}</ref><ref name="CDC-clinicians" /> ===Fluctuating illness course=== Chu et al. (2019) investigated [[Prognosis for myalgic encephalomyelitis and chronic fatigue syndrome|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<ref name="Chu2019"/> ====Remissions==== 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.<ref name="Chu2019"/> ===Diagnostic criteria=== In the [[London criteria]] for [[myalgic encephalomyelitis]], fluctating symptoms are one of the five compulsory disagnostic criteria]: <blockquote>"Fluctuation of symptoms, from hour to hour and day to day"<ref name="Londoncriteria2014">{{Citation | url =http://www.axfordsabode.org.uk/me/mecrit2014.htm|archive-url=http://web.archive.org/web/20150923181011/http://www.axfordsabode.org.uk/me/mecrit2014.htm|archive-date=2015-09-23|url-status=dead | title = Myalgic Encephalomyelitis (ME). Criteria and clinical guidelines. 2014 | date = Oct 15, 2014 | last = Howes | first = Sandra | author-link = Sandra Howes | last2 = Goudsmit | first2 = Ellen M. |author2link = Ellen Goudsmit | last3 = Shepherd | first3 = Charles |author3link = Charles Shepherd}}</ref></blockquote> The [[International Consensus Criteria]] states: <blockquote>"There may be marked fluctuation of symptom severity and hierarchy from day to day or hour to hour. Consider activity, context and interactive effects."<ref name="ICC2011primer">{{citation | last1 = Carruthers | first1 = BM | authorlink1 = Bruce Carruthers | last2 = van de Sande | first2 = MI | authorlink2 = Marjorie van de Sande | last3 = De Meirleir | first3 = KL | authorlink3 = Kenny de Meirleir | last4 = Klimas | first4 = NG | authorlink4 = Nancy Klimas | last5 = Broderick | first5 = G | authorlink5 = Gordon Broderick | last6 = Mitchell | first6 = T | authorlink6 = Terry Mitchell | last7 = Staines | first7 = D | author-link8 = Donald Staines | last8 = Powles | first8 = ACP | author-link8 = A C Peter Powles | last9 = Speight | first9 = N | author-link9 = Nigel Speight | last10 = Vallings | first10 = R | authorlink10 = Rosamund Vallings | last11 = Bateman | first11 = L | authorlink11 = Lucinda Bateman | last12 = Bell | first12 = DS | authorlink12 = David Bell | last13 = Carlo-Stella | first13 = N | authorlink13 = Nicoletta Carlo-Stella | last14 = Chia | first14 = J | authorlink14 = John Chia | last15 = Darragh | first15 = A | authorlink15 = Austin Darragh | last16 = Gerken | first16 = A | authorlink16 = Anne Gerken | last17 = Jo | first17 = D | authorlink17 = Daehyun Jo | last18 = Lewis | first18 = DP | authorlink18 = Donald Lewis | last19 = Light | first19 = AR | authorlink19 = Alan Light | last20 = Light | first20 = KC | authorlink20 = Kathleen Light | last21 = Marshall-Gradisnik | first21 = S | authorlink21 = Sonya Marshall-Gradisnik | last22 = McLaren-Howard | first22 = J | authorlink22 = John McLaren-Howard | last23 = Mena | first23 = I | authorlink23 = Ismael Mena | last24 = Miwa | first24 = K | authorlink24 = Kunihisa Miwa | last25 = Murovska | first25 = M | authorlink25= Modra Murovska | last26 = Stevens | first26 = SR | authorlink26 = Staci Stevens | title = Myalgic encephalomyelitis: Adult & Paediatric: International Consensus Primer for Medical Practitioners | date = 2012| isbn = 978-0-9739335-3-6 | url = http://www.investinme.org/Documents/Guidelines/Myalgic%20Encephalomyelitis%20International%20Consensus%20Primer%20-2012-11-26.pdf}}</ref></blockquote> The ICC also states that in ME "prominent symptoms tend to vary rapidly and dramatically."<ref name="ICC2011primer" /> ===Severe ME=== 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": <blockquote>"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."<ref name="Strassheim2021">{{Cite journal | title = Experiences of Living with Severe Chronic Fatigue Syndrome/Myalgic Encephalomyelitis | date = 2021-02-05| url = https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7914910/|journal=Healthcare|volume=9|issue=2 | pages = 168 | last = Strassheim | first = Victoria | author-link = Victoria Strassheim | last2 = Newton | first2 = Julia L. | authorlink2 = Julia Newton | last3 = Collins | first3 = Tracy | authorlink3 = |doi=10.3390/healthcare9020168|pmc=7914910|pmid=33562474|access-date=|issn=2227-9032|quote=|via=}}</ref></blockquote> ===Possible causes of fluctations=== 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 [[Central nervous system|CNS]] of ME/CFS patients, and this is an important feature of this paradigm."<ref name="Mackay2018">{{Cite journal | last = Mackay | first = Angus | author-link = Angus Mackay | last2 = Tate | first2 = Warren P. | authorlink2 = Warren Tate | date = Dec 2018 | title = A compromised paraventricular nucleus within a dysfunctional hypothalamus: A novel neuroinflammatory paradigm for ME/CFS| url = https://journals.sagepub.com/doi/abs/10.1177/2058738418812342|journal=International Journal of Immunopathology and Pharmacology|volume=|issue= | pages = |doi=10.1177/2058738418812342|quote=|via=}}</ref> {{See also|Neuroinflammation}} 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.<ref name="Davenport2021"/> A [[Boom and bust activity cycle|"boom and bust"]] cycle of overactivity (on better days) then less far activity (due to [[crash]]ing caused by [[post-exertional malaise]]) also leads to large fluctuations in symptoms. Activity [[pacing]] is often suggested to address this.<ref name="Davenport2021"/> {{See also|Boom and bust activity cycle}} {{See also|Pacing}} ==Notable articles== We Already Know Enough to Avoid Making the Same Mistakes Again With Long COVID<ref name="Davenport2021">{{Cite web | url = https://www.jospt.org/do/10.2519/jospt.blog.20210310/ | title = We Already Know Enough to Avoid Making the Same Mistakes Again With Long COVID | last = Davenport | first = Todd | authorlink = Todd Davenport | last2 = Stevens | first2 = Staci R. | authorlink2 = Staci Stevens | date = 2021 | website = Journal of Orthopaedic and Sports Physical Therapy Blog|language=en|doi=10.2519/jospt.blog.20210310/full/|archive-url=|archive-date=|url-status=|access-date=2022-04-03 | last3 = Snell | first3 = Christopher R. | authorlink3 = Christopher Snell | last4 = Van Ness | first4 = J. Mark | authorlink4 = Mark VanNess}}</ref> - [https://doi.org/10.2519/jospt.blog.20210310 (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<ref name="McDonald2021">{{Cite journal | title = 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 | date = 2022-03-01| url = https://doi.org/10.1007/s40271-021-00540-0|journal=The Patient - Patient-Centered Outcomes Research|volume=15|issue=2 | pages = 197–206 | last = McDonald | first = Suzanne | authorlink = Suzanne McDonald | last2 = Tan | first2 = Samuel X. | authorlink2 = | last3 = Banu | first3 = Shamima | authorlink3 = | last4 = van Driel | first4 = Mieke | authorlink4 = | last5 = McGree | first5 = James M. | authorlink5 = | last6 = Mitchell | first6 = Geoffrey | authorlink6 = | last7 = Nikles | first7 = Jane|doi=10.1007/s40271-021-00540-0|pmc=|pmid=|access-date=|issn=1178-1661|quote=|via=}}</ref> - [https://link.springer.com/article/10.1007/s40271-021-00540-0 (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<ref name="Chu2019">{{Cite journal | last = Chu | first = Lily | author-link = Lily Chu | last2 = Valencia | first2 = Ian J. | authorlink2 = Ian Valencia | last3 = Garvert | first3 = Donn W. | authorlink3 = Donn Garvert | last4 = Montoya | first4 = Jose G. | authorlink4 = Jose Montoya | authorlink5 = | date = Feb 5, 2019 | title = Onset Patterns and Course of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | url =https://www.frontiersin.org/articles/10.3389/fped.2019.00012/abstract|journal=Frontiers in Pediatrics|volume=7|issue=12 | pages = |doi=10.3389/fped.2019.00012|quote=|via=}}</ref> [https://www.frontiersin.org/articles/10.3389/fped.2019.00012/abstract (Full text)] *2018, Adolescent's descriptions of fatigue, fluctuation and payback in chronic fatigue syndrome/myalgic encephalopathy (CFS/ME): interviews with adolescents and parents<ref name="Parslow2018">{{Cite journal | title = Adolescent's descriptions of fatigue, fluctuation and payback in chronic fatigue syndrome/myalgic encephalopathy (CFS/ME): interviews with adolescents and parents | date = 2018-12-04| url = https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6307594/|journal=BMJ Paediatrics Open|volume=2|issue=1| pages = e000281 | last = Parslow | first = Roxanne M | author-link = | last2 = Anderson | first2 = Nina | authorlink2 = | last3 = Byrne | first3 = Danielle | authorlink3 = | last4 = Shaw | first4 = Alison | authorlink4 = | last5 = Haywood | first5 = Kirstie L | authorlink5 = | last6 = Crawley | first6 = Esther | authorlink6 = Esther Crawley|doi=10.1136/bmjpo-2018-000281|pmc=6307594|pmid=30613800|access-date=|issn=2399-9772|quote=|via=}}</ref> - [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6307594/ (Full text)] *2011, Symptom fluctuations and daily physical activity in patients with chronic fatigue syndrome: a case-control study<ref name="Fluct2011">{{Cite journal | title = Symptom Fluctuations and Daily Physical Activity in Patients With Chronic Fatigue Syndrome: A Case-Control Study | date = 2011-11-01| url = https://www.archives-pmr.org/article/S0003-9993(11)00417-5/fulltext|journal=Archives of Physical Medicine and Rehabilitation|volume=92|issue=11 | pages = 1820–1826 | last = Meeus | first = Mira | authorlink = Mira Meeus | last2 = Eupen | first2 = Inge van | last3 = Baarle | first3 = Ellen van | last4 = Boeck | first4 = Valérie De | last5 = Luyckx | first5 = Anke | last6 = Kos | first6 = Daphne | last7 = Nijs | first7 = Jo|language=English|doi=10.1016/j.apmr.2011.06.023|issn=0003-9993}}</ref> - [https://www.archives-pmr.org/article/S0003-9993(11)00417-5/pdf (Full text)] ==See also== *[[Chronic illness]] *[[Pacing]] ==Learn more== *[https://www.cdc.gov/me-cfs/healthcare-providers/presentation-clinical-course/index.html Presentation and Clinical Course of ME/CFS] - CDC * ==References== {{reflist}} [[Category:Diagnoses]] [[Category:Signs and symptoms]]
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