Primer for family, friends and care providers

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. Patient care and severity of the disease is poorly understood due to decades of research neglect and a lack of clinical care worldwide.

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

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

Diagnosing ME/CFS 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.

MEAction provides the guide Caring for People with Myalgic Encephalomyelitis.

Disease onset and course of illness
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. "Occasionally, ME/CFS has been triggered by environmental toxins, the receipt of an immunizing injection, or surviving a major trauma." 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.

Pediatric ME/CFS
Children are also afflicted with ME/CFS. See: Pediatric.

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

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

Drugs
Two treatments that have garnered much attention are Ampligen, produced by Hemispherx Biopharma, and Rituximab. Many people have reported enormous benefit from Ampligen, some doctors have been prescribing it for ME/CFS for decades. Attempts to obtain FDA approval for Ampligen in the US have failed so, despite its usefulness, it is unavailable to many. Argentina has approved the use of Ampligen in 2016. Also in 2016, it was made available on a limited basis in Europe. July of 2018, Hemispherx Biopharma, Inc "announced the immediate expansion of its Treatment Protocol/Expanded Access Programs for ME/CFS in the United States, known as AMP-511, to new enrollees for the first time in more than a year."

Rituximab, a lymphoma drug, had shown promising results in initial trials in Norway, and there were groups crowdsourced funding for further trials in other countries. On Nov 21, 2017, Drs. Øystein Fluge and Olav Mella announced that their Rituximab trial had failed. They stated that they would focus their efforts on attempting to identify a subgroup of ME/CFS patients with an immune profile that would be responsive to Rituximab. The Drs. will publish a paper next year with the specifics of the failed trial.

Jarred Younger announced in March 2016 that he will be undertaking a trial of Low dose naltrexone (LDN) in ME/CFS.

Controversy
Psychiatry has taken an inappropriate lead and treatment path for a biological disease. In the UK, GET and CBT are employed by ME Clinics. Exercise exacerbates symptoms and can further injure patients. Depression and anxiety drugs are utilized usually with poor and even damaging results.

Treating a biological disease as a mental illness is cost effective. The drugs are inexpensive and biomedical research is not pursued. People struck down and disabled with ME/CFS are labeled with a mental health issue; disability insurance having clauses excluding a mental health illness/disease kick in stopping any payment or shortening the payout timeframe.

Charlatans claim they can cure CFS ("There is no cure" ) when in reality they may be able to treat chronic fatigue (CF). Some people misdiagnosed and "recovered" from CFS most likely had CF or a bad year or two with Mononucleosis along with a bout or two of Influenza. These individuals were experiencing a proper immune response whereas ME/CFS is an ongoing improper immune response.

Working with government to move forward
Advocates met with senate staffers the week of March 16, 2016, and discussed research and drug development by the NIH, the CDC reinstating and increasing funding and education based on IOM recommendations and the HHS funding to develop Centers of Excellence. MEAction reports on this ongoing process.

CDC Website updates

 * July 3 2017, the CDC's Chronic Fatigue Syndrome page has been changed to Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and GET and CBT recomendations have been removed.


 * July 12 2018, the "Information for Healthcare Providers" tab and its subtabs were updated..

MEAction input
 * Jul 29, 2018, CDC Revises its Information on ME MEAction report on the CDC July 2017 and July 2018 website updates. Recommendations for the CDC's ME/CFS page have been created from the feedback of patients about these updates as well as asking for further patient input.

Documentary

 * 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 sidelined 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

 * 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

 * #MillionsMissing provides a <5 min. short UK Video 'What Is M.E.?' Discusses the disease impact on several people with ME. (2016)

News media

 * Chronic Fatigue: Missing Millions (Carte Blanche DSTV) TV report, South Africa (2017)

Talks and interviews

 * Video: 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 titled Unrest) at 5:30 and 10:20 - Youtube (2016)

Government health organizations

 * USA


 * Centers for Disease Control (CDC)
 * Factsheets - Pediatric Factsheets for Healthcare Professionals, Parents, and Education Professionals. (2014)


 * National Institutes of Health (NIH)
 * Moving Toward Answers in ME/CFS - NIH Director's Blog (2017)


 * Institute of Medicine (IOM)
 * Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Key Facts From the Institute of Medicine report. (2015)


 * 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
 * Frequently Asked Questions


 * USA


 * Open Medicine Foundation (OMF)
 * What is ME/CFS?

ME/CFS organizations

 * Australia


 * Emerge Australia
 * What is ME/CFS?


 * UK


 * ME Association
 * What is ME/CFS?


 * Tymes Trust (Pediatric)
 * Pediatric ME, CFS, SEID for Families and their GPs (2016)


 * USA
 * Massachusetts CFIDS/ME & FM Association
 * About ME/CFS


 * Solve ME/CFS
 * What, Exactly, is a Biomarker Anyway? And Why Don't We Have One for ME/CFS? (2017)


 * Get the Facts about ME/CFS (2016)


 * What is ME/CFS? (2013)


 * International
 * MEAction
 * Caring for People with Myalgic Encephalomyelitis (2018) Guide for Caretakers


 * Facts about Myalgic Encephalomyelitis (ME) (Also called chronic fatigue syndrome or CFS) (2015)


 * Reports and Fact Sheets (2015)

Other organizations

 * National Organization for Rare Disorders (NORD)
 * Myalgic Encephalomyelitis

Other reading

 * What Do You Do When a Loved One Becomes Chronically Ill? By Suzan Jackson

Research avenues

 * 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

 * Metabolic features of chronic fatigue syndrome (2016)
 * Brains of People With Chronic Fatigue Syndrome Offer Clues About Disorder - New York Times: Well (2014) With brain images.
 * Cytokine ("Notable studies")

Learn more

 * Biopsychosocial model (BPS model)
 * Primer for patients
 * Primer for the public
 * Patient groups by country