Primer for family, friends and care providers

2018-05-31T06:22:51Z

JanineB:Punctuation and capitalisation

'''Primer for family, friends and care providers''' is for those who know or care for someone with [[Myalgic Encephalomyelitis]]/[[Chronic Fatigue Syndrome]] (ME/CFS), a complicated and life-altering systemic, biological, neuro-immune disease.<ref>[http://www.openmedicinefoundation.org/what-is-mecfs/ What is ME/CFS? - Open Medicine Foundation]</ref> Patient care and severity of the disease is poorly understood due to decades of research neglect and a lack of clinical care worldwide.<ref>[http://healthaffairs.org/blog/2016/02/04/reexamining-chronic-fatigue-syndrome-research-and-treatment-policy/ Reexamining Chronic Fatigue Syndrome Research And Treatment Policy - Health Affairs Blog By: David Tuller]</ref><ref>[http://www.meaction.net/2017/01/22/funding-for-me-research-centers-announced-falls-way-short/ Funding for ME Research Centers Announced Falls Way Short -#MEAction]</ref>

[[Chronic Fatigue Syndrome]] (CFS) is not [[Chronic Fatigue]]. It is not a psychiatric illness or "illness beliefs" which is the widely accepted hypothesis in the UK.<ref>[http://www.25megroup.org/infomedical_MWilliams_submission_DSM.html Submission re: DSM-V and ME/CFS 25% ME Group]</ref><ref>[https://www.nytimes.com/2017/03/18/opinion/sunday/getting-it-wrong-on-chronic-fatigue-syndrome.html?smid=tw-share Getting it Wrong on Chronic Fatigue Syndrome - New York Times By: Julie Rehmeyer and David Tuller]</ref> This has led to the use of [[Graded exercise therapy|Graded Exercise Therapy]] (GET), which can severely injure persons with [[ME/CFS]]; and [[Cognitive behavioral therapy|Cognitive Behavioural Therapy]] (CBT) that cannot treat a physiological disease. [[Exercise]] and exertion make patients worse triggering a myriad of chronic and disabling symptoms.<ref>[https://directorsblog.nih.gov/2017/03/21/moving-toward-answers-in-mecfs/ Moving Toward Answers in ME/CFS - NIH Director's Blog By Dr. Walter Koroshetz and Dr. Francis Collins]</ref><ref>[http://www.openmedicinefoundation.org/what-is-mecfs/ What is ME/CFS? - Open Medicine Foundation]</ref><ref>[http://solvecfs.org/what-is-mecfs/ Get the Facts about ME/CFS]</ref> The hallmark symptom is [[Post-exertional malaise]] (PEM).

ME/CFS affects up to 2.5 million Americans with estimates of 17 million worldwide.<ref>[http://www.nationalacademies.org/hmd/~/media/Files/Report%20Files/2015/MECFS/MECFS_KeyFacts.pdf ''Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Key Facts - Feb 2015'']</ref><ref>[http://www.meresearch.org.uk/news/how-many-people-have-mecfs/ How many people have ME/CFS - ME Research UK]</ref> "A quarter of all patients are entirely house-, bed- or wheelchair-bound. One in ten dies prematurely due to major organ failure, [[cancer]], heart disease or [[suicide]]."<ref>[http://sacfs.asn.au/news/2013/10/10_08_fdas_voice_of_the_patient_report.htm FDA's Voice of the Patient Report on Chronic Fatigue Syndrome Reveals Disease Impact and Areas for Progress - ME/CFS Australia (SA) Inc - By: Pandora.org]</ref> In 2012, the [[Centers for Disease Control & Prevention]] (CDC) estimated less than 20% of Americans that have CFS were diagnosed.<ref>[https://www.cdc.gov/cfs/diagnosis/index.html Chronic Fatigue Syndrome - Diagnostic Challenges - CDC - 2012]</ref> Diagnosis can take years with a patient seeing several doctors before receiving a diagnosis. A 2008 [[ProHealth]] survey of 1,210 ME/CFS patients showed "29% had been ill from 6 to 20-plus years before being diagnosed."<ref>[http://www.prohealth.com/library/showarticle.cfm?libid=13672 A Profile of ME/CFS Patients - How Many Years and How Many Doctors?]</ref>

Diagnosing ME/CFS is difficult as there is no [[biomarker]] and there are numerous definitions and criteria that have been developed and utilized over the decades. ''See:'' [[Definitions of ME and CFS]].

== Disease onset and course of illness==
The disease [[ME/CFS]] is diagnosed when a person does not recover from a flu-like illness, [[EBV]], [[Mononucleosis]], [[HHV]], [[Q fever]], [[Virus]] or other infections and meets one or more diagnostic criteria for either ME, CFS or ME/CFS.<ref>[https://www.nap.edu/read/19012/chapter/7#157 IOM Report - INFECTION]</ref><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><ref>[http://me-pedia.org/wiki/Definitions_of_ME_and_CFS Definitions of ME and CFS - MEpedia]</ref> "Occasionally, ME/CFS has been triggered by environmental toxins, the receipt of an immunizing injection, or surviving a major trauma."<ref>[https://www.masscfids.org/images/pdf/Primer_2014.pdf Chronic Fatigue Syndrome Myalgic Encephalomyelitis - Primer for Clinical Practitioners - 2014 Edition - Massachusettes CFIDS/FM Assoc]</ref> Patient health is never the same and they experience numerous symptoms and disease severity which fluctuate 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.meassociation.org.uk/about/the-symptoms-and-diagnosis-of-mecfs/ Symptoms and diagnosis of ME/CFS - ME Association]</ref><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>

==== Pediatric ME/CFS ====
Children are also afflicted with ME/CFS.<ref>[http://www.openmedicinefoundation.org/2016/06/25/mecfs-in-children-by-dr-david-s-bell-2/ ME/CFS in Children - by David S. Bell, MD - Open Medicine Foundation]</ref><ref>[https://www.masscfids.org/pediatric-me-cfs-links Pediatric ME/CFS - Massachusetts CFIDS/ME FM Association]</ref> ''See'': [[Pediatric]].

==== Prognosis ====
Prognosis for ME/CFS is generally poor. ''See'': [[Prognosis]]

==== 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<ref>[http://emedicine.medscape.com/article/329838-overview#a5 Fibromyalgia:Epidemiology - Medscape]</ref> 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>

== Recommended viewing ==

==== Documentary ====

*[[Forgotten Plague]] is a US documentary about [[Ryan Prior]], an afflicted journalist who investigates the disease and its history and why the [[CDC]] has left millions sidelined from life; available for [http://www.forgottenplague.com/ streaming and DVD ''purchase'']. (2015)

*[[Unrest]] is a US documentary film that will air on PBS's Independent Lens in 2018. [[Jennifer Brea]], a person with [[ME]], directs. (2017)

==== Mini-doc & Short film ====

*[[Invisible Illness - Stories of Chronic Fatigue Syndrome]] is a [https://www.youtube.com/watch?v=9_HwOUiImvw Palo Alto Online, US Mini-Doc on Youtube]. It documents 3 people with [[CFS]] suffering from the same disease in varying degrees of illness. (2015)

*[[The Last Great Medical Cover Up]] is a [https://vimeo.com/143904110 UK short Film on Vimeo] with several patient interviews. (2015)

====Shorts ====

* #[[MillionsMissing]] provides a <5 min. short UK Video [http://millionsmissing.org/learn/?utm_content=bufferf61ee&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer 'What Is M.E.?'] Discusses the disease impact on several people with [[ME]]. (2016)

==== News media ====

*[[Chronic Fatigue: Missing Millions (Carte Blanche DSTV)]] TV report, South Africa (2017)

==== Talks and interviews ====

*[http://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose Video: What happens when you have a disease doctors can't diagnose] Jennifer Brea gives a [https://en.wikipedia.org/wiki/TED_(conference) TED Talk] to explain her psychiatric misdiagnosis of [https://en.wikipedia.org/wiki/Conversion_disorder Conversion disorder], her correct diagnosis of [[Myalgic encephalomyelitis]], the disease impact on her life and how women are more often to receive a psychiatric misdiagnosis for a biologic disease. (2016)

*Jennifer Brea is interviewed for the upcoming BRIC Flix on her ME/CFS disease experience and her 2017 documentary film [[Canary in a Coal Mine]] (now titled Unrest) at [https://www.youtube.com/watch?v=zeIefNymFuw 5:30 and 10:20 - Youtube] (2016)

== Recommended reading ==
====Government health organizations====

:'''USA'''

:[[Centers for Disease Control]] (CDC)
:*[https://www.cdc.gov/cfs/pediatric/factsheets.html Factsheets - Pediatric] Factsheets for Healthcare Professionals, Parents, and Education Professionals. (2014)

:[[National Institutes of Health]] (NIH)
:*[[Moving Toward Answers in ME/CFS - NIH Director's Blog (2017)]]

:[[Institute of Medicine]] (IOM)
:*[http://www.nationalacademies.org/hmd/~/media/Files/Report%20Files/2015/MECFS/MECFS_KeyFacts.pdf Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Key Facts] From the [[Institute of Medicine report]]. (2015)

:*[http://www.nationalacademies.org/hmd/~/media/Files/Report%20Files/2015/MECFS/MECFS_ReportBrief.pdf Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Redefining an Illness] Report Brief on the Institute of Medicine report. (2015)

==== ME/CFS research foundations ====

:'''UK'''

:[[Invest in ME]]
:*[http://www.investinme.org/faqs.shtml Frequently Asked Questions]

:'''USA'''

:[[Open Medicine Foundation]] (OMF)
:*[http://www.openmedicinefoundation.org/what-is-mecfs/ What is ME/CFS?]

==== ME/CFS organizations ====

:'''Australia'''

:[[Emerge Australia]]
:*[https://emerge.org.au/about-mecfs/diagnosis/mecfs/ What is ME/CFS?]

:'''UK'''

:[[ME Association]]
:*[http://www.meassociation.org.uk/about/what-is-mecfs/ What is ME/CFS?]

:[[Tymes Trust]] (Pediatric)
:*[http://www.tymestrust.org/pdfs/mecfsseid.pdf Pediatric ME, CFS, SEID for Families and their GPs] (2016)

:'''USA'''
:[[Massachusetts CFIDS/ME & FM Association]]
:*[https://www.masscfids.org/cfids-me-cfs About ME/CFS]

:[[Solve ME/CFS]]
:*[https://drive.google.com/file/d/0B6UlcglLsyp7WkgxbmdaWXVhbVU/view What, Exactly, is a Biomarker Anyway? And Why Don't We Have One for ME/CFS?] (2017)

:*[http://solvecfs.org/what-is-mecfs/ Get the Facts about ME/CFS] (2016)

:*[http://solvecfs.org/wp-content/uploads/2013/06/SMCI_MECFS_FactSheet.pdf What is ME/CFS?] (2013)

:'''International'''
:[[MEAction]]
:*[http://www.meaction.net/wp-content/uploads/2015/10/ME-Facts-v2-1.pdf Facts about Myalgic Encephalomyelitis (ME) (Also called chronic fatigue syndrome or CFS)] (2015)

:*[http://www.meaction.net/reports-and-fact-sheets/?utm_content=bufferc2125&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer Reports and Fact Sheets] (2015)

==== Other organizations ====

:[https://rarediseases.org/ National Organization for Rare Disorders] (NORD)
:*[https://rarediseases.org/rare-diseases/myalgic-encephalomyelitis/ Myalgic Encephalomyelitis]

==== Other reading====

:*[http://thirdage.com/what-do-you-do-when-a-loved-one-becomes-chronically-ill/ What Do You Do When a Loved One Becomes Chronically Ill?] By Suzan Jackson

== Research avenues ==

*Dr. [[Anthony Komaroff]] Webinar [https://www.youtube.com/watch?v=ENrdrGj0p-c Hot Areas in ME/CFS Research] (2016)
*[[Beyond the Data – Chronic Fatigue Syndrome: Advancing Research and Clinical Education]] CDC Video (2016)

== Notable studies ==

*[[Metabolic features of chronic fatigue syndrome]] (2016)
*[[Brains of People With Chronic Fatigue Syndrome Offer Clues About Disorder - New York Times: Well (2014)]] With brain images.
*[[Cytokine#Notable_Studies|Cytokine ("Notable studies")]]

== Learn more ==

*[[Biopsychosocial model]] (BPS model)
*[[Primer for patients]]
*[[Primer for the public]]
*[http://me-pedia.org/wiki/Category:Patient_groups_by_country Patient groups by country]

== See also ==

*Twitter [https://twitter.com/search?f=tweets&vertical=default&q=%23mecfs&src=typd #mecfs]
*[https://voat.co/v/CFS/new VOAT Chronic Fatigue Syndrome Subverse] Articles, research, videos and more.

== References ==

[[Category:Primers]]
<references />

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Primer for family, friends and care providers