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

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


*[[Unrest]] is a 2017 US documentary film that will air on PBS's Independent Lens in 2018. [[Jennifer Brea]], a person with [[ME]], directs.
*[[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 ====
==== Mini-doc & Short film ====
*[[Invisible Illness - Stories of Chronic Fatigue Syndrome]] is a [https://www.youtube.com/watch?v=9_HwOUiImvw 2015 Palo Alto Online, US Mini-Doc on Youtube].  It documents 3 people with [[CFS]] suffering from the same disease in varying degrees of illness.
*[[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 2015 UK short Film on Vimeo] with several patient interviews.
 
*[[The Last Great Medical Cover Up]] is a [https://vimeo.com/143904110 UK short Film on Vimeo] with several patient interviews. (2015)


====Shorts ====
====Shorts ====
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==== Talks and interviews ====
==== Talks and interviews ====
*[http://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose 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. (June, 2016)
*[http://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose 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]] at [https://www.youtube.com/watch?v=zeIefNymFuw 5:30 and 10:20.] (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 called Unrest) at [https://www.youtube.com/watch?v=zeIefNymFuw 5:30 and 10:20.] (2016)


== Recommended reading ==
== Recommended reading ==

Revision as of 19:02, 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

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]