Primer for family, friends and care providers

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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.[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] This has led to the use of Graded exercise therapy (GET), which can severely injure persons with ME/CFS, and Cognitive behavioral therapy (CBT) that cannot treat a physiological disease. Exercise and exertion make patients worse triggering a myriad of chronic and disabling symptoms.[6][7][8] The hallmark symptom is Post-exertional malaise (PEM).

ME/CFS affects up to 2.5 million Americans with estimates of 17 million worldwide.[9][10] "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."[11] In 2012, the Centers for Disease Control & Prevention (CDC) estimated less than 20% of Americans that have CFS were diagnosed.[12] 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."[13]

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: Definitions of ME and CFS.

Disease onset and course of illness[edit]

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.[14][15][16] "Occasionally, ME/CFS has been triggered by environmental toxins, the receipt of an immunizing injection, or surviving a major trauma."[17] 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.[18][19][20]

Pediatric ME/CFS[edit]

Children are also afflicted with ME/CFS.[21][22] See: Pediatric.

Prognosis[edit]

Prognosis for ME/CFS is generally poor. See: Prognosis

Female to male ratio[edit]

Like many auto-immune and neuro-immune diseases where mostly women are afflicted,[23] the ME/CFS female/male patient ratio is 6:1.[24] Fibromyalgia has a F/M 7:1 ratio[25] and some ME/CFS patients have this additional diagnosis.[26][27]

Recommended viewing[edit]

Documentary[edit]

  • 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]

Shorts[edit]

News media[edit]

Talks and interviews[edit]

Recommended reading[edit]

Government health organizations[edit]

USA
Centers for Disease Control (CDC)
National Institutes of Health (NIH)
Institute of Medicine (IOM)

ME/CFS research foundations[edit]

UK
Invest in ME
USA
Open Medicine Foundation (OMF)

ME/CFS organizations[edit]

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

Other organizations[edit]

National Organization for Rare Disorders (NORD)

Other reading[edit]

Research avenues[edit]

Notable studies[edit]

Learn more[edit]

See also[edit]

References[edit]

  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. Moving Toward Answers in ME/CFS - NIH Director's Blog By Dr. Walter Koroshetz and Dr. Francis Collins
  7. What is ME/CFS? - Open Medicine Foundation
  8. Get the Facts about ME/CFS
  9. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Key Facts - Feb 2015
  10. How many people have ME/CFS - ME Research UK
  11. 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
  12. Chronic Fatigue Syndrome - Diagnostic Challenges - CDC - 2012
  13. A Profile of ME/CFS Patients - How Many Years and How Many Doctors?
  14. IOM Report - INFECTION
  15. 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
  16. Definitions of ME and CFS - MEpedia
  17. Chronic Fatigue Syndrome Myalgic Encephalomyelitis - Primer for Clinical Practitioners - 2014 Edition - Massachusettes CFIDS/FM Assoc
  18. Symptoms and diagnosis of ME/CFS - ME Association
  19. Chronic Fatigue Syndrome - Symptoms - Web MD
  20. Facts (ME/CFS) Severity
  21. ME/CFS in Children - by David S. Bell, MD - Open Medicine Foundation
  22. Pediatric ME/CFS - Massachusetts CFIDS/ME FM Association
  23. Fact Sheet Autoimmune Disease in Women: NWHIC - Right Diagnosis - Aug 2015
  24. Chronic fatigue syndrome/myalgic encephalomyelitis: an update. - PUBMed Dec. 2010
  25. Fibromyalgia:Epidemiology - Medscape
  26. Fibromyalgia - CDC
  27. What Is ME/CFS (Fibromyalgia) Solve ME/CFS Initiative


The information provided at this site is not intended to diagnose or treat any illness.

From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history