Primer for patients

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This Primer for patients will provide the information you need to better understand your personal diagnosis of Chronic Fatigue Syndrome, (CFS) Myalgic encephalomyelitis (ME) or ME/CFS which can be very different with severity and symptoms from patient to patient.

You will need to educate yourself about your disease and discuss your very real symptoms with your doctor. ME/CFS is well known but outside of relatively few studies has not been approached as a biological illness. Unfortunately, a psychiatric approach has been taken with ME/CFS, but this is changing. At this time there are no approved drug treatments. Graded exercise therapy and Cognitive behavioral therapy are used in the UK inappropriately for treating ME/CFS.

A 2015 study by the Institute of Medicine recognized the ME/CFS disease burden to be up 2.5 million Americans and "the direct and indirect economic costs of ME/CFS to society are estimated to be approximately over $17 to $24 billion annually."[1][2] There are an estimated 17 million people with ME/CFS worldwide.[3] A 2008 Centers for Disease Control & Prevention (CDC) study which used a CFS definition to diagnose, Fukuda criteria, noted, "Of the one to four million Americans who have CFS, less than 20% have been diagnosed."[4]

Take time when you are able to review this Primer. Because you are not well this can be overwhelming at times so only do what you are mentally and physically able.

Disease onset and course of 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.[5][6][7] "Occasionally, ME/CFS has been triggered by environmental toxins, the receipt of an immunizing injection, or surviving a major trauma."[8] 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.[9][10][11]

Pediatric ME/CFS[edit | edit source]

Children are also afflicted with ME/CFS.[12][13] See: Pediatric.

Prognosis[edit | edit source]

Unfortunately, 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,[14] the ME/CFS female/male patient ratio is 6:1.[15] Fibromyalgia has a F/M 7:1 ratio[16] and some ME/CFS patients have this additional diagnosis.[17][18]

Symptoms[edit | edit source]

Hallmark symptom[edit | edit source]

  • Post-exertional malaise (PEM) is the hallmark symptom of ME/CFS. After physical or mental exertion (which for some patients can be a shower or making out a to-do list, others grocery shopping, socializing or reading a news article, while some just walking to the mailbox, getting to the doctor or mentally following a T.V. program) there is a payback which can be delayed 24-48 hours and can last 24 hours or more. The patient will experience even greater fatigue as well as exasperate the flu-like symptoms and body pain. Every patient experiences different symptoms and symptom severity from different activities and exertion output according to how sick he or she is with the disease.[19][20][21]
Regarding PEM the CFIDS Association of America states: "This is a term which describes a symptom in which exercise or exertion can bring on malaise (illness). In the case of people with ME/CFS, malaise often occurs during a period some 24-72 hours after exertion. For example, in some cases, a short walk can worsen ME/CFS symptoms two days later. This lack of understanding about the delayed onset of symptoms has, in the past, made it harder to test for ME/CFS. Follow up tests, taken less than 24 hours after an initial exercise test, may show that the patient can still perform activities at the same level (before post exertional malaise has a chance to take hold)."[22]

Core and additional symptoms[edit | edit source]

The Institute of Medicine report (USA) listed these core symptoms in the Clinicians Guide:

Expanded lists of symptoms[edit | edit source]

Tests to discuss with your doctor[edit | edit source]

Graded exercise therapy & Cognitive behavioral therapy[edit | edit source]

Graded exercise therapy (GET) and Cognitive behavioral therapy (CBT) are usually employed in the UK, Ireland and some parts of Europe through ME Clinics. They are highly controversial and not recommended by patients, most patient advocates, and research organizations nor by many doctors or researchers outside of the UK. Based on the flawed PACE trial which used the flawed Oxford criteria to diagnose and recruit patients, GET and CBT found its way into treating people with ME/CFS.

Exercise, especially GET, can injure an ME/CFS patient further.

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]

Recommended reading[edit | edit source]

Government health organizations[edit | edit source]

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

ME/CFS research foundations[edit | edit source]

Invest in ME
Open Medicine Foundation (OMF)

ME/CFS organizations[edit | edit source]

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

Other organizations[edit | edit source]

National Organization for Rare Disorders (NORD)

Other reading[edit | edit source]

Connect with organizations and other persons with ME/CFS[edit | edit source]

  • For information and support, you may want to review materials offered by a patient group in your area.
See: Patient groups by country
Science for ME, Phoenix Rising, r/cfs, and Health Rising are forums where you can ask questions, get support, and read about the latest research.
  • There are many research initiatives around the world working on ME/CFS.
See: Research initiatives by country
Solve ME/CFS produces printed, online and e-mail newsletters. Take their Do I have ME/CFS? QUIZ

Learn more[edit | edit source]

See also[edit | edit source]

Other resources[edit | edit source]

  • Twitter #mecfs Connect with patients, caregivers, and ME/CFS organizations for support, articles, and research.
  • VOAT: CFS A pinboard site with research, articles, videos and more!
  • Health FMS/ME/CFS Well written articles with simply stated facts about ME/CFS and Fibromyalgia.
  • Phoenix Rising Citizen Scientists debate the latest ME/CFS science.
  • MDJunction Support for patients and caregivers from other patients and caregivers.

References[edit | edit source]

  1. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Redefining an Illness - National Academies of Medicine of Sciences Engineering Medicine (Pg. 2)
  2. ME Prevalence by State and Congr District
  3. How many people have ME/CFS? - ME Research UK
  4. Chronic Fatigue Syndrome - Diagnosis - Centers for Disease Control and Prevention
  5. IOM Report - INFECTION
  6. 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
  7. Definitions of ME and CFS - MEpedia
  8. Chronic Fatigue Syndrome Myalgic Encephalomyelitis - Primer for Clinical Practitioners - 2014 Edition - Massachusettes CFIDS/FM Assoc
  9. Symptoms and diagnosis of ME/CFS - ME Association
  10. Chronic Fatigue Syndrome - Symptoms - Web MD
  11. Facts (ME/CFS) Severity
  12. ME/CFS in Children - by David S. Bell, MD - Open Medicine Foundation
  13. Pediatric ME/CFS - Massachusetts CFIDS/ME FM Association
  14. Fact Sheet Autoimmune Disease in Women: NWHIC - Right Diagnosis - Aug 2015
  15. Chronic fatigue syndrome/myalgic encephalomyelitis: an update. - PUBMed Dec. 2010
  16. Fibromyalgia:Epidemiology - Medscape
  17. Fibromyalgia - CDC
  18. What Is ME/CFS (Fibromyalgia) Solve ME/CFS Initiative
  19. Unraveling Post-Exertional Malaise - Solve ME/CFS Initiative By: Jennifer M. Spotila, J.D. - Plus a link to all 4 parts
  20. Chronic Fatigue Syndrome - Symptoms - Web MD
  21. Post-Exertional Malaise - Health - FMS/ME/CFS
  22. What Health - International CFS/ME Awareness Day 2017 - CFIDS Association of America

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