Primer for family, friends and care providers: Difference between revisions

From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history
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====Government health organiztions====
====Government health organiztions====
'''USA'''
'''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)
[[National Institutes of Health]] (NIH)
*[[Moving Toward Answers in ME/CFS]] (Mar 2017)
*[[Moving Toward Answers in ME/CFS]] (2017)


[[Institute of Medicine]] (IOM)
[[Institute of Medicine]] (IOM)
*Fact Sheet: [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)
*[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)


*Report brief: [http://www.nationalacademies.org/hmd/~/media/Files/Report%20Files/2015/MECFS/MECFS_ReportBrief.pdf Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Redefining an Illness] (Feb 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)




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


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



Revision as of 19:28, March 22, 2017

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complicated and life altering systemic, biological neuro-immune disease.[1] Patient care and severity of the disease is poorly understood due to decades of research neglect and a lack of clinical care worldwide.[2][3]

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.[4][5] Exercise and exertion make patients worse triggering a myriad of chronic and disabling symptoms.[6][7] The hallmark symptom is Post-exertional malaise.

ME/CFS affects up to 2.5 million Americans and 17 million worldwide.[8][9] "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."[10]

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

Disease onset and lifelong illness[edit | edit source]

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.[11][12][13] 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.[14][15][16] Overall, prognosis is poor.

Female to male ratio[edit | edit source]

Like many auto-immune and neuro-immune diseases where mostly women are afflicted,[17] the ME/CFS female/male patient ratio is 6:1.[18] Fibromyalgia has a F/M 7:1 ratio and some ME/CFS patients have this additional diagnosis.[19][20]

Recommended viewing[edit | edit source]

Documentary[edit | edit source]

  • 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[edit | edit source]

Shorts[edit | edit source]

News media[edit | edit source]

Talks and interviews[edit | edit source]

  • 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 called Unrest) at 5:30 and 10:20. (2016)

Recommended reading[edit | edit source]

Government health organiztions[edit | edit source]

USA

Centers for Disease Control (CDC)

National Institutes of Health (NIH)

Institute of Medicine (IOM)


ME/CFS research foundations[edit | edit source]

USA

Open Medicine Foundation (OMF)


ME/CFS organizations[edit | edit source]

Australia

Emerge Australia


UK

ME Association

Tymes Trust (Pediatric)


USA

MEAction

Solve ME/CFS

Other organizations[edit | edit source]

National Organization for Rare Disorders (NORD)


Other reading[edit | edit source]

Research avenues[edit | edit source]

Notable studies[edit | edit source]

Learn more[edit | edit source]

See also[edit | edit source]

References[edit | edit source]