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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== Recommended reading == | == Recommended reading == | ||
====Government health organiztions==== | ====Government health organiztions==== | ||
'''USA''' | :'''USA''' | ||
[[Centers for Disease Control]] (CDC) | :[[Centers for Disease Control]] (CDC) | ||
*[https://www.cdc.gov/cfs/pediatric/factsheets.html Factsheets - Pediatric] Factsheets for Healthcare Professionals, Parents and Education Professionals. (2014) | :*[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]] (2017) | :*[[Moving Toward Answers in ME/CFS]] (2017) | ||
[[Institute of Medicine]] (IOM) | :[[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_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) | :*[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 ==== | ==== ME/CFS organizations ==== | ||
'''Australia''' | :'''Australia''' | ||
[[Emerge Australia]] | :[[Emerge Australia]] | ||
*[https://emerge.org.au/about-mecfs/diagnosis/mecfs/ What is ME/CFS?] | :*[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. | :*[http://www.tymestrust.org/pdfs/mecfsseid.pdf Pediatric ME, CFS, SEID for Families and their GPs] (2016) | ||
:'''USA''' | |||
:[[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) | |||
[[ | :[[Solve ME/CFS]] | ||
*[http:// | :*[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) | |||
==== Other organizations ==== | ==== Other organizations ==== | ||
[https://rarediseases.org/ National Organization for Rare Disorders] (NORD) | :[https://rarediseases.org/ National Organization for Rare Disorders] (NORD) | ||
*[https://rarediseases.org/rare-diseases/myalgic-encephalomyelitis/ Myalgic Encephalomyelitis] | :*[https://rarediseases.org/rare-diseases/myalgic-encephalomyelitis/ Myalgic Encephalomyelitis] | ||
==== Other reading==== | ==== 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 | :*[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 == | == Research avenues == | ||
Revision as of 21:20, 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]
Pediatric ME/CFS[edit | edit source]
Children are also afflicted with ME/CFS.[17][18]
Prognosis[edit | edit source]
Prognosis for ME/CFS is generally poor. See: Prognosis
Female to male ratio[edit | edit source]
Like many auto-immune and neuro-immune diseases where mostly women are afflicted,[19] the ME/CFS female/male patient ratio is 6:1.[20] Fibromyalgia has a F/M 7:1 ratio and some ME/CFS patients have this additional diagnosis.[21][22]
Recommended viewing[edit | edit source]
Documentary[edit | edit source]
- 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 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[edit | edit source]
- Invisible Illness - Stories of Chronic Fatigue Syndrome is a 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 UK short Film on Vimeo with several patient interviews. (2015)
Shorts[edit | edit source]
- #MillionsMissing provides a <5 min. short UK Video 'What Is M.E.?' Discusses the disease impact on several people with ME. (2016)
News media[edit | edit source]
- Chronic Fatigue: Missing Millions (Carte Blanche DSTV) TV report, South Africa (2017)
Talks and interviews[edit | edit source]
- What happens when you have a disease doctors can't diagnose Jennifer Brea gives a TED Talk to explain her psychiatric misdiagnosis of 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 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)
- Factsheets - Pediatric Factsheets for Healthcare Professionals, Parents and Education Professionals. (2014)
- Institute of Medicine (IOM)
- Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Redefining an Illness Report Brief on the Institute of Medicine report. (2015)
ME/CFS research foundations[edit | edit source]
- UK
- USA
ME/CFS organizations[edit | edit source]
- Australia
- UK
- Tymes Trust (Pediatric)
- USA
- Reports and Fact Sheets (2015)
- What is ME/CFS? (2013)
Other organizations[edit | edit source]
Other reading[edit | edit source]
- What Do You Do When a Loved One Becomes Chronically Ill? By: Suzan Jackson
Research avenues[edit | edit source]
- Dr. Anthony Komaroff Webinar Hot Areas in ME/CFS Research (2016)
- Beyond the Data – Chronic Fatigue Syndrome: Advancing Research and Clinical Education CDC Video (2016)
Notable studies[edit | edit source]
- Metabolic features of chronic fatigue syndrome (2016)
- Brains of People With Chronic Fatigue Syndrome Offer Clues About Disorder With brain images. (2014)
- Cytokine ("Notable studies")
Learn more[edit | edit source]
See also[edit | edit source]
- Twitter #mecfs and #PwME (Person with ME)
- Articles and Research: VOAT Chronic Fatigue Syndrome Subverse
- Fibromyalgia
References[edit | edit source]
- ↑ What is ME/CFS? - Open Medicine Foundation
- ↑ Reexamining Chronic Fatigue Syndrome Research And Treatment Policy - Health Affairs Blog By: David Tuller
- ↑ Funding for ME Research Centers Announced Falls Way Short -#MEAction
- ↑ Submission re: DSM-V and ME/CFS 25% ME Group
- ↑ Getting it Wrong on Chronic Fatigue Syndrome - New York Times By: Julie Rehmeyer and David Tuller
- ↑ What is ME/CFS? - Open Medicine Foundation
- ↑ Get the Facts about ME/CFS
- ↑ Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Key Facts - Feb 2015
- ↑ FM/CFS/ME Resources
- ↑ 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
- ↑ IOM Report - INFECTION
- ↑ 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
- ↑ Definitions of ME and CFS - MEpedia
- ↑ Symptoms and diagnosis of ME/CFS - ME Association
- ↑ Chronic Fatigue Syndrome - Symptoms - Web MD
- ↑ Facts (ME/CFS) Severity
- ↑ ME/CFS in Children - by David S. Bell, MD - Open Medicine Foundation
- ↑ Pediatric ME/CFS - Massachusetts CFIDS/ME FM Association
- ↑ Fact Sheet Autoimmune Disease in Women: NWHIC - Right Diagnosis - Aug 2015
- ↑ Chronic fatigue syndrome/myalgic encephalomyelitis: an update. - PUBMed Dec. 2010
- ↑ Fibromyalgia - CDC
- ↑ What Is ME/CFS (Fibromyalgia) Solve ME/CFS Initiative
