Primer for patients

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 (GET) and cognitive behavioral therapy (CBT) 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." There are an estimated 17 million people with ME/CFS worldwide. A 2008 Centers for Disease Control and 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."

The acronym ME/CFS is widely used in research, by research and patient organizations, and patients. "The most common overlapping condition with ME/CFS is fibromyalgia."

The core ME/CFS symptoms are: chronic fatigue (CF); post-exertional malaise (PEM); unrefreshing sleep; and cognitive impairment or orthostatic intolerance (OI). A patient can have many more symptoms and meet different criteria. Systemic Exertion Intolerance Disease (SEID), an ME/CFS criteria, allows for a patient to be diagnosed with the minimum core symptoms. The Canadian Consensus Criteria (CCC) requires neurological, gastrointestinal, immune system, and other symptoms to meet its ME/CFS diagnostic criteria. The International Consensus Criteria (ICC) is used to diagnose myalgic encephalomyelitis (ME) which requires more neurological, gastrointestinal, and immune system symptoms for a diagnosis. Although Fukuda and the Oxford Criteria are used for diagnosing CFS, they are both overly broad and there is a problem with patients experiencing CF due to other diseases, illnesses, and depression and they are being diagnosed with CFS; this can happen in clinical and research settings.

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.

https://www.youtube.com/watch?v=pqDubEeIBtA

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.

Mini-Docs
What happens when you have a disease doctors can't diagnose By Jen Brea/TED

https://www.youtube.com/watch?v=Fb3yp4uJhq0

Five years ago, TED Fellow Jen Brea became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome, a debilitating illness that severely impairs normal activities and on bad days makes even the rustling of bed sheets unbearable. In this poignant talk, Brea describes the obstacles she's encountered in seeking treatment for her condition, whose root causes and physical effects we don't fully understand, as well as her mission to document through film the lives of patients that medicine struggles to treat.

Invisible Illness - Stories of Chronic Fatigue Syndrome By Veronica Weber/Palo Alto Onlinehttps://www.youtube.com/watch?v=9_HwOUiImvw

This mini documentary reveals 3 stories of people who have been impacted by Chronic Fatigue Syndrome - a little known disease that affects roughly 836,000-2.5 million people in the U.S. and receives little research funding. They share emotions of treating loved ones with the disease, their frustrations of being ignored by members of society and the healthcare industry and express hopes of treatment and research. Video by Veronica Weber/Palo Alto Online

Diagnosis and Management of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome By Dr. David Kaufman/Unresthttps://www.youtube.com/watch?v=RC9TjgE_PlU

This video on the diagnosis and management of myalgic encephalomyelitis and chronic fatigue syndrome is part of the Unrest Continuing Education module, made available through the American Medical Women’s Association and Indiana University School of Medicine, and in partnership with #MEAction. US medical providers can visit: https://www.unrest.film/cme to register to watch Unrest online for free and receive Continuing Education credit.

Epidemiology

 * Epidemiology
 * Female predominant diseases
 * Like many autoimmune and neuro-immune diseases where mostly women are afflicted, the ME/CFS female/male patient ratio is 6:1.


 * Pediatric
 * Prognosis
 * Prevalence
 * "An estimated 17-20 million people suffer from ME/CFS worldwide, and 25% of them have a very severe form of it." The 25% of patients who are severely ill are either bed-bound, wheelchair bound, or are housebound or nearly so. The ME/CFS Severely Ill, Big Data Study is focused on this 25%.


 * All races and cultures are afflicted with ME/CFS. Children and adolescents are also diagnosed.

United States In the United States, 836,000 - 2.5 million people suffer from ME/CFS. "The total economic costs of ME/CFS are estimated at $17 to $24 billion annually." Some CFS patients can work with job accommodations but 1/3 to 1/2 become unemployed and many rely on SSDI/SSI.

Symptoms
Symptom presentation varies enormously between individuals. Symptom presentation also varies within individuals, as individuals often report that symptoms change over time (increasing or decreasing) and new symptoms may appear while others disappear. There are many symptoms which people with ME/CFS experience, though those listed below are arguably the most common: "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)."
 * 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 of worsening ME/CFS symptoms which can be delayed 24-72 hours or more  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.   Regarding PEM the CFIDS Association of America states:
 * Chronic fatigue
 * Cognitive dysfunction
 * Orthostatic intolerance, such as postural orthostatic tachycardia syndrome (POTS) or neurally mediated hypotension (NMH)
 * Unrefreshing sleep, and sleep disturbance

Other possible symptoms

 * Chronic pain is a mandatory symptom in the Canadian Consensus Criteria.
 * Neurological signs and symptoms (Category on MEpedia). Also, see: Neurological impairments in International Consensus Criteria and Neuroinflammation.

Expanded lists of symptoms

 * Symptoms of Chronic Fatigue Syndrome
 * What are the symptoms of ME/CFS?

Comorbids

 * Fibromyalgia, irritable bowel syndrome, temporomandibular joint disorder (TMJ) and multiple chemical sensitivity

Government guides on symptoms
US Government guides on symptoms
 * Clinicians Guide via The Institute of Medicine report (IOM)
 * CDC - ME/CFS Symptoms

Canada guides on symptoms
 * Alberta Clinicians Guide

Tests to discuss with your doctor

 * Sleep study for sleep apnea, restless leg syndrome, and other sleep disturbances.
 * Tilt table test for orthostatic intolerance, or postural orthostatic tachycardia syndrome (POTS).
 * Natural killer cell

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 time-frame.

Graded exercise therapy & Cognitive behavioral therapy
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.


 * Jennifer Brea walked home from her Neurologist's office and became wheelchair bound.
 * This is an experience of serious injury due to GET shared by K. Miles, via Tom Kindlon on Twitter.
 * Emma Shorter was able to walk a few minutes a day until GET put her in a wheelchair.
 * Doctor Speedy was also seriously injured by GET.

Claims of curative treatments
Charlatans claim they can cure CFS (per the CDC "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 which can be caused by many illnesses, diseases, and drug therapies or a bad year or two perhaps with mononucleosis followed by a bout or two of influenza. These individuals were experiencing a proper immune response whereas ME/CFS patients experience an ongoing improper immune response and other abnormalities for at least 6 months straight with a reduction in activity with a specific symptom set for at least 50% of the time.

Additionally, some athletes diagnosed with CFS that recovered were actually suffering from overtraining syndrome, a condition they sometimes acquire, while some people with adrenal fatigue are sometimes diagnosed with CFS.

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 National Institutes of Health (NIH), the Centers for Disease Control and Prevention (CDC) reinstating and increasing funding and education based on Institute of Medicine report recommendations and the Health and Human Services (HHS) funding to develop Centers of Excellence. #MEAction reports on this ongoing process.

CDC Website updates

 * Jul 3, 2017, the CDC's Chronic Fatigue Syndrome page has been changed to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and GET and CBT recommendations have been removed.


 * Jul 12, 2018, the "Information for Healthcare Providers" tab and its sub-tabs 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 patient feedback on the updates as well as asking for further patient input.

Documentary
Films
 * 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 aired on PBS's Independent Lens in 2018 and is available for streaming and DVD purchase. Jennifer Brea, a person with ME, directs. (2017)

Short film

 * The Last Great Medical Cover Up is a UK short Film on Vimeo with several patient interviews. (2015)

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 (hysteria), 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. (2016)

Government health organizations

 * US


 * Centers for Disease Control (CDC)
 * ME/CFS in Children Fact Sheets (2017) Fact Sheets for Healthcare Professionals, Parents/Guardians, Education Professionals


 * 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


 * US


 * 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)


 * US
 * 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

History

 * Osler's Web is a book by Hillary Johnson on the early history of CFS.
 * Thirty Years of Disdain by Mary Dimmock and Matthew Lazell-Fairman picks up on the ME/CFS history where Osler's Web leaves off.

Deaths of ME/CFS patients

 * Causes of death
 * Suicide

Death certificates with ME or CFS
 * Merryn Crofts' death is attributed to ME.
 * Sophia Mirza's death is attributed to CFS.

In the UK, United States, and Australia there are claims loved ones have died due to ME/CFS. See Editor's Note

Notable studies

 * 2014, Brains of People With Chronic Fatigue Syndrome Offer Clues About Disorder With brain images.
 * Cytokine ("Notable studies")
 * List of enterovirus infection studies
 * 2016, Metabolic features of chronic fatigue syndrome


 * 2019, Evidence of widespread metabolite abnormalities in Myalgic encephalomyelitis/chronic fatigue syndrome: assessment with whole-brain magnetic resonance spectroscopy
 * 2018, ME/CFS Involves Brain Inflammation: Results from a Ramsay Pilot Study

Connect with organizations and other persons with ME/CFS

 * 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
Patient mental health


 * Patients
 * Karina Hansen is a young Danish woman taken from her family for 3 1/2 years due to Per Fink's insistence her ME was due to mental health issues.
 * Sophia Mirza was taken forcibly from her home to a mental hospital only to be returned shortly after and died.
 * Ean Proctor was taken from his parents as a young boy and he was told his "parents were letting him die." He had become paralyzed and mute and was let go in the deep end to make him swim and put on a scary theme park ride to scare him into moving.

More mental health information
 * ME/CFS is not depression. It is a lack of energy, not desire.


 * Notable studies
 * Outbreaks

Other resources

 * Phoenix Rising Citizen Scientists debate the latest ME/CFS science.
 * Science for ME Friendly forum on ME/CFS, FMS, and comorbid illnesses.
 * Twitter #mecfs Connect with patients, caregivers, and ME/CFS organizations for support, articles, and research.
 * Verywell FMS/CFS Well written articles with simply stated facts about ME/CFS and Fibromyalgia.