Primer for family, friends and care providers

From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history
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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 estimates of 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] In 2012, the Centers for Disease Control (CDC) estimated less than 20% of Americans that have CFS were diagnosed.[11] 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."[12]

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.[13][14][15] 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.[16][17][18]

Pediatric ME/CFS[edit | edit source]

Children are also afflicted with ME/CFS.[19][20] See: Pediatric.

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,[21] the ME/CFS female/male patient ratio is 6:1.[22] Fibromyalgia has a F/M 7:1 ratio and some ME/CFS patients have this additional diagnosis.[23][24]

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 organizations[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]

UK
Invest in ME
USA
Open Medicine Foundation (OMF)

ME/CFS organizations[edit | edit source]

Australia
Emerge Australia
UK
ME Association
Tymes Trust (Pediatric)
USA
Massachusetts CFIDS/ME & FM Association
MEAction (International Outreach)
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]

  1. What is ME/CFS? - Open Medicine Foundation
  2. Reexamining Chronic Fatigue Syndrome Research And Treatment Policy - Health Affairs Blog By: David Tuller
  3. Funding for ME Research Centers Announced Falls Way Short -#MEAction
  4. Submission re: DSM-V and ME/CFS 25% ME Group
  5. Getting it Wrong on Chronic Fatigue Syndrome - New York Times By: Julie Rehmeyer and David Tuller
  6. What is ME/CFS? - Open Medicine Foundation
  7. Get the Facts about ME/CFS
  8. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Key Facts - Feb 2015
  9. How many people have ME/CFS - ME Research UK
  10. 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
  11. Chronic Fatigue Syndrome - Diagnostic Challenges - CDC - 2012
  12. A Profile of ME/CFS Patients - How Many Years and How Many Doctors?
  13. IOM Report - INFECTION
  14. 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
  15. Definitions of ME and CFS - MEpedia
  16. Symptoms and diagnosis of ME/CFS - ME Association
  17. Chronic Fatigue Syndrome - Symptoms - Web MD
  18. Facts (ME/CFS) Severity
  19. ME/CFS in Children - by David S. Bell, MD - Open Medicine Foundation
  20. Pediatric ME/CFS - Massachusetts CFIDS/ME FM Association
  21. Fact Sheet Autoimmune Disease in Women: NWHIC - Right Diagnosis - Aug 2015
  22. Chronic fatigue syndrome/myalgic encephalomyelitis: an update. - PUBMed Dec. 2010
  23. Fibromyalgia - CDC
  24. What Is ME/CFS (Fibromyalgia) Solve ME/CFS Initiative