Chronic fatigue syndrome: Difference between revisions

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'''Chronic fatigue syndrome''' (CFS) is the name coined by the [[Centers for Disease Control]] (CDC) in response to an outbreak of "chronic flu like illness" at [[1984 Incline Village chronic fatigue syndrome outbreak|Incline Village]], Lake Tahoe in 1984-1985.<ref>[http://www.nytimes.com/1987/07/28/science/fatigue-virus-has-experts-more-baffled-and-skeptical-than-ever.html?pagewanted=1 Fatigue 'Virus' Has Experts More Baffled And Skeptical Than Ever - NY Times July 1987]</ref>
'''Chronic fatigue syndrome''' (CFS) was a name coined by the [[Centers for Disease Control]] (CDC) in response to an outbreak of "chronic flu-like illness" in [[1984 Incline Village chronic fatigue syndrome outbreak|Incline Village]], Lake Tahoe in 1984-1985<ref>[http://www.nytimes.com/1987/07/28/science/fatigue-virus-has-experts-more-baffled-and-skeptical-than-ever.html?pagewanted=1 Fatigue 'Virus' Has Experts More Baffled And Skeptical Than Ever - NY Times July 1987]</ref> and several [[Epidemic myalgic encephalomyelitis|outbreaks]] and sporadic cases in the [[United States]] during the 1980s.


As of February 2013, the CDC recognized that more than one million Americans have [[CFS]].<ref>[http://www.cdc.gov/cfs/causes/risk-groups.html Chronic Fatigue Syndrome - CDC]</ref> The February 2015 [[Institute of Medicine report]] stated that there are 836,000 to 2.5 million [[ME/CFS]] patients.<ref name="IOM2015MECFS"/>
Prior to Incline Village, chronic fatigue syndrome was known as [[myalgic encephalomyelitis]]. The "chronic fatigue syndrome" outbreaks of the 1980s and 1990s were likely ME outbreaks, although they differed in some respects from the 1930s-1960s outbreaks. With the development of the 1991 [[Oxford criteria]] and the 1994 [[Fukuda criteria]] for CFS, which differed in significant respects from historic descriptions of ME, CFS became a wastebasket diagnosis that included patients with ME along with those suffering from a wide range of undefined or misdiagnosed fatiguing illnesses.
 
Chronic Fatigue Syndrome should be distinguished from [[chronic fatigue]], which is a symptom of many different conditions, though not a condition in its own right. These terms are often confused by the media, healthcare practitioners and the general public. CFS is a grossly misnamed disease whereas CF is a symptom of many diseases, illnesses and drug therapies.<ref>[http://chronicfatigue.about.com/od/whatischronicfatigue/a/cf_vs_cfs.htm?utm_content=bufferda812&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer Chronic Fatigue vs. Chronic Fatigue Syndrome - One's a Symptom, One's a Disease - About.com Health FMS/ME/CFS By: Adrienne Dellwo]</ref><ref>[http://arthritis.about.com/od/fatigue/f/chronicfatigue.htm Chronic Fatigue Versus Chronic Fatigue Syndrome What's the Difference? - About.com Health FMS/ME/CFS - By: Carol Eustice]</ref>  Dr. [[Jarred Younger]] explains chronic fatigue and begins by stating "Fatigue is not a disease and it is not even a symptom.  So fatigue is a alarm system and the most general alarm system the body has." [https://www.youtube.com/watch?v=wJB95m4FLa0 Webinar with Jarred Younger, Ph.D. (@6:04-7:54)]
 
 
== Symptoms ==
 
=== Hallmark symptom ===
*[[Post-exertional malaise]] (PEM) is the hallmark symptom of ME/CFS. After physical or mental exertion (which for some patients can be a shower or making out a to-do list, others grocery shopping, socializing or reading a news article, while some just walking to the mailbox, getting to the doctor or mentally following a T.V. program) there is a payback which can be delayed 24-48 hours and can last 24 hours or more.  The patient will experience even greater fatigue as well as exasperating the flu-like symptoms and body pain.  Every patient experiences different symptoms and symptom severity from different activities and exertion output according to how sick he or she is with the disease.<ref>[http://solvecfs.org/unraveling-post-exertional-malaise/ Unraveling Post-Exertional Malaise - Solve ME/CFS Initiative By: Jennifer M. Spotila, J.D. - Plus a link to all 4 parts]</ref><ref>[http://www.webmd.com/chronic-fatigue-syndrome/chronic-fatigue-syndrome-symptoms Chronic Fatigue Syndrome - Symptoms - Web MD]</ref><ref>[http://chronicfatigue.about.com/od/cfsglossary/g/malaise.htm Post-Exertional Malaise - About.com Health - FMS/ME/CFS]</ref>
 
 
:Regarding PEM the [[CFIDS Association of America]] states: "This is a term which describes a symptom in which exercise or exertion can bring on malaise (illness). In the case of people with ME/CFS, malaise often occurs during a period some 24-72 hours after exertion. For example, in some cases, a short walk can worsen ME/CFS symptoms two days later. This lack of understanding about the delayed onset of symptoms has, in the past, made it harder to test for ME/CFS. Follow up tests, taken less than 24 hours after an initial exercise test, may show that the patient can still perform activities at the same level (before post exertional malaise has a chance to take hold)."<ref>[http://www.whathealth.com/awareness/event/internationalcfsmeawarenessday.html - What Health - International CFS/ME Awareness Day 2017 - CFIDS Association of America]</ref>
 
=== Core and additional symptoms (see IOM Clinicians Guide below) ===
<div style="column-count:2;-moz-column-count:2;-webkit-column-count:2">
*[[Orthostatic intolerance]]
*[[POTS]]
*[[Cognitive dysfunction]]
*[[Unrefreshing sleep]]
*[[Chronic fatigue]]
*[[Chronic pain]]
*Immune Impairment
*Infection
</div>
 
=== Other symptoms, comorbids  ===
*Neurologic impairments - ME: [[ICC]]<ref>[https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3427890/ Myalgic encephalomyelitis: International Consensus Criteria - Wiley - Journal of International Medicine]</ref>
*[[Fibromyalgia]], [[Irritable bowel syndrome]], [[Temporomandibular joint disorder]] (TMJ) and [[Multiple Chemical Sensitivity]]<ref>[http://solvecfs.org/what-is-mecfs/ What is ME/CFS? - Solve ME/CFS Initiative]</ref>
==== Expanded lists of symptoms ====
 
*[http://chronicfatigue.about.com/od/whatischronicfatigue/a/cfs_symptoms.htm Chronic Fatigue Syndrome Symptoms - The Monster List!]
 
*[http://solvecfs.org/what-is-mecfs/ What are the symptoms of ME/CFS?]
 
== Clinicians guides ==
 
====US Government guides on symptoms====
*The [[Institute of Medicine report]] - IOM [http://www.nationalacademies.org/hmd/~/media/Files/Report%20Files/2015/MECFS/MECFScliniciansguide.pdf Clinicians Guide]
*[http://www.cdc.gov/cfs/symptoms/index.html CDC - CFS Symptoms]
 
==== Canada guides on symptoms ====
*[http://linkis.com/org/tUheh Alberta Clinicians Guide]
 
== Disease onset ==
CFS usually comes on with a flu-like illness, virus or infection<ref>[http://www.cortjohnson.org/blog/2014/01/09/lipkin-study-vagus-nerve-hhv-6-loomis-hhv-6-foundation/ The Lipkin Study, The Vagus Nerve Infection Hypothesis and HHV-6: Kristin Loomis of the HHV-6 Foundation Talks – Pt. I - Health Rising - By: Cort Johnson - June 2014]</ref> where the patient is left never the same and with varying symptoms and disease severity fluctuating day to day, week to week, month to month, year to year and decade to decade as well as varying symptoms and disease severity among patients.<ref>[http://www.webmd.com/chronic-fatigue-syndrome/chronic-fatigue-syndrome-symptoms Chronic Fatigue Syndrome - Symptoms - Web MD]</ref><ref>[http://phoenixrising.me/mecfs-basics/chronic-fatigue-syndrome-mecfs-facts-chronic-fatigue-syndrome-is-2 Facts (ME/CFS) Severity]</ref>
 
=== Female to male ratio ===
Like many auto-immune and neuro-immune diseases where mostly women are afflicted,<ref>[http://www.rightdiagnosis.com/artic/fact_sheet_autoimmune_disease_in_women_nwhic.htm Fact Sheet Autoimmune Disease in Women: NWHIC - Right Diagnosis - Aug 2015]</ref> the ME/CFS female/male patient ratio is 6:1.<ref>[https://www.ncbi.nlm.nih.gov/pubmed/21244747 Chronic fatigue syndrome/myalgic encephalomyelitis: an update. - PUBMed Dec. 2010]</ref> [[Fibromyalgia]] has a F/M 7:1 ratio and some ME/CFS patients have this additional diagnosis.<ref>[http://www.cdc.gov/arthritis/basics/fibromyalgia.htm Fibromyalgia - CDC]</ref><ref>[http://solvecfs.org/what-is-mecfs/ What Is ME/CFS (Fibromyalgia) Solve ME/CFS Initiative]</ref>
 
[[Jennifer Brea]] gives a [https://en.wikipedia.org/wiki/Women's_Media_Center WMC] Live radio interview addressing F/M auto-immune ratio and the disease [https://secure-hwcdn.libsyn.com/p/1/c/3/1c390d4707a99658/WMCLive_Episode159.mp3?c_id=11198959&expiration=1458320878&hwt=eb06639b1ec5ae7b7fd4e0fd83cc70f9 at 5:00].
 
==Clinical Course==
From the [[Centers for Disease Control]] (CDC): ''What's the Clinical Course of CFS?''
 
::The severity of CFS varies from patient to patient. Some people can maintain fairly active lives. For most patients, however, CFS significantly limits their work, school, and family activities for periods of time.
 
::While symptoms vary from person to person in number, type, and severity, all CFS patients are limited in what they can do to some degree. CDC studies show that CFS can be as disabling as multiple sclerosis, lupus, rheumatoid arthritis, heart disease, end-stage renal disease, chronic obstructive pulmonary disease (COPD), and similar chronic conditions.
 
::CFS often affects patients in cycles: Patients will have periods of illness followed by periods of relative well-being. For some patients, symptoms may diminish or even go into complete remission; however, they often recur at a later point in time. This pattern of remission and relapse makes CFS especially hard for patients to manage. Patients who are in remission may be tempted to overdo activities when they're feeling better, but this overexertion may actually contribute to a relapse.
 
::The percentage of CFS patients who recover is unknown, but there is some evidence to indicate that patients benefit when accompanying conditions are identified and treated and when symptoms are managed. High-quality health care is important.<ref>[http://www.cdc.gov/cfs/symptoms/index.html What's the Clinical Course of CFS? - CDC]</ref>


==Name controversy==
==Name controversy==
The name Chronic Fatigue Syndrome is controversial, as many consider it stigmatising. For decades, patient advocates have been lobbying the CDC to instead use the name [[Myalgic Encephalomyelitis]] ([[ME]]), though the CDC has refused.<ref>[http://www.chronicfatiguesupport.com/library/showarticle.cfm/id/7603 A Disease in Search of a Name: The History of CFS and the Efforts to Change Its Name - Chronic Fatigue Support]</ref> Most patients and patient organisations prefer the name [[ME]], or the hybrid [[ME/CFS]].  
The name Chronic Fatigue Syndrome is controversial, as many consider it stigmatizing and focusing on a symptom, [[chronic fatigue]]. For decades, patient advocates have been lobbying the [[Centers for Disease Control and Prevention]] (CDC) to instead use the name [[Myalgic Encephalomyelitis]] ([[ME]]).<ref>[http://www.chronicfatiguesupport.com/library/showarticle.cfm/id/7603 A Disease in Search of a Name: The History of CFS and the Efforts to Change Its Name - Chronic Fatigue Support]</ref> Most patients and patient organizations prefer the name [[ME]], or the hybrid [[ME/CFS]].
 
In February 2016, Dr [[Anthony Komaroff]], who was part of the [[Centers for Disease Control]] ([[CDC]]) group of clinicians who coined the name Chronic Fatigue Syndrome, said of it:
 
<blockquote>"I think that was a big mistake because the name, in my opinion, and the opinion of a lot of people, it both trivialises and stigmatises the illness. It makes it seem unimportant, maybe not even real".<ref name="Komaroff20160217video"/></blockquote>


Dr. [[Nancy Klimas]] discusses the name controversy in the video [https://www.youtube.com/watch?v=c2vIQ92wU9Y ME/CFS Diagnosis and Name].
*Jun 2014 Dr. [[Nancy Klimas]] discusses the name controversy in the video [https://www.youtube.com/watch?v=c2vIQ92wU9Y ME/CFS Diagnosis and Name].


== Notable studies ==
*Feb 2016, Dr [[Anthony Komaroff]], who was part of the CDC group of clinicians who coined the name Chronic Fatigue Syndrome, said of it: "I think that was a big mistake because the name, in my opinion, and the opinion of a lot of people, it both trivializes and stigmatizes the illness. It makes it seem unimportant, maybe not even real".<ref name="Komaroff20160217video"/>
*[[Metabolic features of chronic fatigue syndrome]]
*[[Brains of People With Chronic Fatigue Syndrome Offer Clues About Disorder]]
*2016, A six year longitudinal MRI study found that [[Chronic Fatigue Syndrome]] (per Fukuda & Canadian Consensus Criteria) is associated with decreases in [[white matter]], [[gray matter]] and blood volume deficits in the brain as compared to healthy controls.<ref name="Shan2016"/><ref name="JaimeS20160505"/>
*2016, Dr. [[Jose Montoya]] and Dr. [[Michael Zeineh]]'s brain imaging studies show CFS patients suffer 3 brain abnormalities: an overall reduction in white matter; consistent abnormality in the [[right arcuate fasciculus]]; thickened gray matter at two areas of the brain connected by the right [[arcuate fasciculus]].<ref>[http://privatehealthcarereports.com/chronic-fatigue-patients-suffer-3-major-brain-abnormalities-findings-may-lead-to-clearer-diagnosis/ Chronic Fatigue Patients Suffer 3 Major Brain Abnormalities; Findings May Lead To Clearer Diagnosis. - Patient Health Care]</ref>


== History ==
*Jul 2017, the [[CDC]] changed its website for Chronic Fatigue Syndrome to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).<ref>[https://www.cdc.gov/me-cfs/index.html Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - Centers for Disease Control]</ref>
*[[Osler's Web]] is a book on the early history of CFS.
*[[Thirty Years of Disdain]] picks up on the ME/CFS history where Osler's Web leaves off.
*[[Forgotten Plague]] 2015 documentary on the CDC and US patient history of CFS.
*[[List of news articles on ME and CFS]]
*[[Sophia Mirza]]'s life ended due to CFS.
*[http://me-pedia.org/wiki/Disabled_in_Tory_Britain#PACE_trial UK agencies involved in implementation of the PACE trial. Disabled in Tory Britain - PACE trial]


==Learn more==
== See also ==
*[[Definitions of ME and CFS]]
* [[Myalgic encephalomyelitis]]
*[[Brain imaging]]
* [[ME/CFS]]
 
* [[List of myalgic encephalomyelitis and chronic fatigue syndrome outbreaks]]
==See also==
*[[Systemic Exertion Intolerance Disease]] ([[SEID]]) is the [[Institute of Medicine report]] diagnostic criteria.
*[[Primer for the public]] An extensive overview of the disease(s) ME, CFS, ME/CFS and SEID, their criteria, history, research and more.
*[[PACE trial]] The highly controversial UK trial that led to the implementation of [[Graded exercise therapy]] (GET) and [[Cognitive behavioral therapy]] (CBT) as treatment paths for CFS.


== References ==
== References ==
<references>
<references>
<ref name="IOM2015MECFS">{{citation
| last1  = Institute of Medicine (USA)
| last2  = Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
| display-authors =
| title  = Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness
| date    = 10 February 2015
| url    = http://iom.nationalacademies.org/Reports/2015/ME-CFS.aspx
}}</ref>


<ref name="Komaroff20160217video">{{citation
<ref name="Komaroff20160217video">{{citation
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}}</ref>
}}</ref>


<ref name="JaimeS20160505">{{citation
<!-- ...1....+....2....+....3....+....4....+....5....+....6....+....7....+....8....+....9....+....0 --->
| author  = Jaime S                                        | authorlink1 = Jaime S
</references>
| title  = Progressive Brain Changes in Patients with Chronic Fatigue Syndrome: Are our Brains Starved of Oxygen?
| journal = #MEAction
| date    = 2016-05-05
| url    = http://www.meaction.net/2016/05/05/progressive-brain-changes-in-patients-with-chronic-fatigue-syndrome-are-our-brains-starved-of-oxygen/
}}</ref>
 
<ref name="Shan2016">{{citation
| last1  = Shan            | first1 = ZY                | authorlink1 = Zack Shan
| last2  = Kwiatek          | first2 = R                  | authorlink2 = Richard Kwiatek
| last3  = Burnet          | first3 = R                  | authorlink3 = Richard Burnet
| last4  = Del Fante        | first4 = P                  | authorlink4 = Peter Del Fante
| last5  = Staines          | first5 = DR                | authorlink5 = Donald Staines
| last6  = Marshall-Gradisnik| first6 = SM                | authorlink6 = Sonya Marshall-Gradisnik
| last7  = Barnden          | first7 = LR                | authorlink7 = Leighton Barnden
| title  = Progressive brain changes in patients with chronic fatigue syndrome: A longitudinal MRI study
| journal = Journal of magnetic resonance imaging: JMRI
| date    = 2016-04-28
| pmid    = 27123773 | doi = 10.1002/jmri.25283
| url    = http://onlinelibrary.wiley.com/doi/10.1002/jmri.25283/abstract;jsessionid=070BE1111DE3D52AC62FD00B68E96028.f03t01
}}</ref>
 
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[[Category:Diagnoses]]
[[Category:Disease names]]

Revision as of 19:25, July 18, 2018

Chronic fatigue syndrome (CFS) was a name coined by the Centers for Disease Control (CDC) in response to an outbreak of "chronic flu-like illness" in Incline Village, Lake Tahoe in 1984-1985[1] and several outbreaks and sporadic cases in the United States during the 1980s.

Prior to Incline Village, chronic fatigue syndrome was known as myalgic encephalomyelitis. The "chronic fatigue syndrome" outbreaks of the 1980s and 1990s were likely ME outbreaks, although they differed in some respects from the 1930s-1960s outbreaks. With the development of the 1991 Oxford criteria and the 1994 Fukuda criteria for CFS, which differed in significant respects from historic descriptions of ME, CFS became a wastebasket diagnosis that included patients with ME along with those suffering from a wide range of undefined or misdiagnosed fatiguing illnesses.

Name controversy[edit | edit source]

The name Chronic Fatigue Syndrome is controversial, as many consider it stigmatizing and focusing on a symptom, chronic fatigue. For decades, patient advocates have been lobbying the Centers for Disease Control and Prevention (CDC) to instead use the name Myalgic Encephalomyelitis (ME).[2] Most patients and patient organizations prefer the name ME, or the hybrid ME/CFS.

  • Feb 2016, Dr Anthony Komaroff, who was part of the CDC group of clinicians who coined the name Chronic Fatigue Syndrome, said of it: "I think that was a big mistake because the name, in my opinion, and the opinion of a lot of people, it both trivializes and stigmatizes the illness. It makes it seem unimportant, maybe not even real".[3]
  • Jul 2017, the CDC changed its website for Chronic Fatigue Syndrome to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).[4]

See also[edit | edit source]

References[edit | edit source]