Primer for the public

Primer for the public offers a broad audience, an abundance of detailed information on Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) are complex, chronic, and poorly understood medical conditions. ME was first categorized as a neurological disease by the World Health Organization in 1969. CFS was first formally defined by the United States Centers for Disease Control in 1988 as a framework for researching unexplained chronic fatigue associated with a mononucleosis-like syndrome. There remains a lack of consensus among members of the medical and research communities regarding the equivalence of ME and CFS. Some believe that CFS is intended to describe the same disease entity as ME, while others believe that they are distinct conditions but with overlapping symptom profiles. In deference to this lack of consensus, the combined term 'ME/CFS' is often used.

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.

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.

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

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

Disease names and acronyms around the world
The United States and Australia usually refer to the disease as CFS, (Chronic Fatigue Syndrome). Many European countries, the United Kingdom and Ireland mostly use the name ME, (Myalgic Encephalomyelitis). Most countries, as well as doctors and researchers worldwide, will also use the acronym ME/CFS and a few CFS/ME. See: Definitions of ME and CFS.

The symptom chronic fatigue (CF) should not be used in place of the name Chronic Fatigue Syndrome (CFS); this has been a source of confusion of CF the symptom and CFS the disease. CFS is a grossly misnamed disease whereas CF is a symptom of many diseases, illnesses and drug therapies. Dr. Jarred Younger explains chronic fatigue and begins by stating "Fatigue is not a disease and it is not even a symptom. So fatigue is a alarm system and the most general alarm system the body has." Webinar with Jarred Younger, Ph.D. (@6:04-7:54)

Myalgic Encephalomyelitis (ME)
Although many similar diseases have occurred for centuries, in the 1920s - 1940s there were sporadic outbreaks around the world, of both poliomyelitis, and what Dr. Melvin Ramsay called 'Benign Myalgic Encephalomyelitis' ('benign because it is disabling but not usually fatal). In 1969, the World Health Organisation included "Myalgic Encephalitis' in its 'International Classification of Diseases' (ICD), under the category 'Diseases of the Nervous System', code G93.3.

From ME to CFS
Incline Village, Lake Tahoe, NV, USA experienced an outbreak during 1984-1985. The Centers for Disease Control (CDC) were sent to investigate. Dr. Anthony Komaroff studied cases from the outbreak and eventually he and a body of clinicians settled on the name "Chronic Fatigue Syndrome". Dr. Komaroff discusses the name emerging in the documentary film Forgotten Plague.

From CFS to 'any unexplained fatigue'
Various groups invented new definitions, that required only 'medically unexplained fatigue' such as Reeves criteria and Oxford criteria. Fatigue is a common symptom in any population, with many different causes. These new definitions allowed some psychiatrists to claim that CFS could be 'cured' through exercise and positive thinking which has been promoted through the PACE trial and that this 'cure' also applied to people who are severely ill with Myalgic Encephalomyelitis. Postviral fatigue syndrome (PVFS) is the next frontier of the psychological paradigm keeping control of an organic disease and have been laying groundwork to do so.

SEID name and diagnostic criteria
Systemic Exertion Intolerance Disease (SEID) is a diagnostic criteria proposed by the Institute of Medicine (IOM) in the Institute of Medicine report. This clinical criteria was developed for doctors in the United States to diagnose at 6 months instead of years or even decades. Doctors are encouraged to perform tests prior to six months, such as a Tilt table test or sleep study if symptoms require further investigation. Treating symptoms such as Orthostatic intolerance or a sleep disorder can begin prior to the six months needed to diagnose.

Disease impact
"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.

U.S.
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.

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.

Jennifer Brea gives a WMC Live radio interview addressing F/M auto-immune ratio and the disease at 5:00.

Hallmark symptom

 * 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.


 * 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)."

Core and additional symptoms (see IOM Clinicians Guide below)

 * Orthostatic intolerance
 * POTS
 * Cognitive dysfunction
 * Unrefreshing sleep
 * Chronic fatigue
 * Chronic pain
 * Immune Impairment
 * Infection

US Government guides on symptoms

 * The Institute of Medicine report - IOM Clinicians Guide
 * CDC - CFS Symptoms

Canada guides on symptoms

 * Alberta Clinicians Guide

Other symptoms, comorbids

 * Neurologic impairments - ME: ICC
 * Fibromyalgia, Irritable bowel syndrome, Temporomandibular joint disorder (TMJ) and Multiple Chemical Sensitivity

Expanded lists of symptoms

 * Chronic Fatigue Syndrome Symptoms - The Monster List!


 * What are the symptoms of ME/CFS?

Three stages
Dr. David Bell, who serves on the Scientific Advisory Board for the Open Medicine Foundation, discusses three stages of the disease in the article Prognosis of ME/CFS.


 * At the first stage, there is an acute illness where EBV is likely responsible for most adolescents but there is no standard viral illness. The initial virus likely fades away in a week and the patient feels better and is ready for regular activities. He adds "in a person with a gradual onset of symptoms, this stage would be different."
 * Second stage "occurs when the symptoms do not disappear but persist for months to years in roughly the same severity. There is little variation day-to-day, and this time is very confusing. Many medical providers are contacted, most giving conflicting opinions varying from psychological disorders to possible exotic infections, but the tests come back normal."
 * In the third stage patients will have mild, gradual improvements over years and patients adjust their lives to the symptoms. Patients may look well and recovery is thought to have taken place. Some patients will make a full recovery in 3-4 years but "recovery and improvement are completely different."

Poor long-term prognosis
Dr. Bell has great concern for patients 35 years old who had become ill as teens and has been studying a group that first became ill in 1985. "Some of the young adults rated their health as “good,” while the amount of activity they could perform was minimal. They had become so used to their performance level, they accepted it as their new normal. Unfortunately, many of them, while they described their health as good, they were unable to work full time or carry on other duties." It is now understood that persons with ME/CFS do not have a good long-term prognosis and it is actually poor as "full recovery from untreated CFS is rare."

Few Return to Pre-illness State of Functioning

In about 40% of people with ME/CFS, the condition will improve over time, though recovery rates from the condition are generally quite low (less than 10%). The condition may also take a relapsing/remitting course, so individuals who appear to have recovered, may actually be in remission. For 5-20% of people, the condition is degenerative. Some studies suggest that prognosis is better for those with less severe symptoms, and who developed the condition at a younger age (childhood-young adulthood), though these findings are not consistent. It is clear that few people will return to their pre-illness state of health and functioning.

Drugs, treatments and therapies
There are currently no FDA approved treatments for ME/CFS. Treatments consist mostly of symptom management, rather than treatment of the underlying cause of the condition, which is not yet understood. There are many potential treatments, though their evidence-base is limited, as most research into treatments has gone into psychological approaches to treatment.

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

 * 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 recomendations have been removed.


 * Jul 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 patient feedback on the updates as well as asking for further patient input.

Currently used

 * Fukuda criteria (Sometimes referred to as CDC Criteria)
 * Canadian Consensus Criteria (CCC)
 * Oxford criteria
 * International Consensus Criteria (ICC)
 * Reeves criteria (Sometimes called Empirical definition)
 * SEID (Recommended but not adopted.)

Currently not in use

 * Holmes criteria
 * London criteria
 * Nightingale definition
 * Ramsay definition
 * NIOF

The different criteria used from one doctor to another and researcher to researcher results in confusion for doctors trying to diagnose, poor research and discord between patients, medical professionals, and charitable organizations. Adding to the confusion is a clinical criteria will at times be used in research and a research criteria used by a clinician to diagnose. Many US researchers will use Fukuda (using the PEM "option") and CCC in a single research project. The NIH Post-Infectious ME/CFS Study will be using four: SEID, Fukuda, CCC and Reeves. The ME/CFS community want to participate in this study's design.

Current

 * NIH Post-Infectious ME/CFS Study is outlined by Shannon Firth; Editor Dr. Sanjay Gupta in the article "NIH Gears Up for First-Ever Chronic Fatigue Study". An Open Letter from Mary Schweitzer to Dr. Gupta about the study.
 * Dr. Derek Enlander of Mount Sinai, NY has announced a study to prove or disprove exercise as a treatment for ME/CFS patients. (Begin at 17:30 of the video.)

Completed

 * Metabolic features of chronic fatigue syndrome by the Open Medicine Foundation show blood chemical signature. ME/CFS Severely Ill, Big Data Study
 * Cytokine research by Mady Hornig and Ian Lipkin show Immune Signatures. Columbia University Mailman School of Public Health (With video)
 * Brains of People With Chronic Fatigue Syndrome Offer Clues About Disorder - New York Times: Well (2014) by Stanford ME/CFS Initiative
 * Illness progression in chronic fatigue syndrome: a shifting immune baseline
 * National Centre for Neuroimmunology and Emerging Diseases claim to have a biomarker screening test.
 * Institute of Medicine report

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

 * 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 called Unrest) at 5:30 and 10:20. (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
 * 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

Disputed therapies

 * PACE trial is a highly controversial study based on GET and CBT as therapies for ME/CFS patients. Patients, caretakers, ME/CFS charities and organizations as well as many clinicians, researchers, and others oppose this study due to outcome switching and other issues. The therapies are not just useless, they are injuring patients. (See Heading: "Drugs, treatments and therapies" and Open Letters.) David Tuller has written and spoken at length about the PACE and FINE trial.


 * Lightning Process A "therapy" misused for the disease ME/CFS.

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.
 * List of news articles on ME and CFS
 * UK agencies involved in the implementation of the PACE trial. Disabled in Tory Britain - PACE trial
 * Important events timeline

Deaths attributed to ME or CFS

 * Sophia Mirza's life ended due to CFS and Merryn Crofts death is attributed to ME. Other deaths in the UK, United States, and Australia have also recorded deaths due to ME or CFS. See Editor's Note

Learn more
Potential treatments and research
 * Ampligen Used in Argentina for the treatment of ME/CFS.
 * Brain imaging
 * Natural killer cell
 * Neuroinflammation
 * Vagus nerve infection hypothesis

Guides and reports
 * Caring for People with Myalgic Encephalomyelitis (2018) Guide for Caretakers
 * "In the Expectation of Recovery" by Centre for Welfare Reform UK

Mental health
 * Karina Hansen Young Danish woman taken from her family for three years due to Per Fink's insistance her ME was due to mental health issues.
 * Patient mental health

Outbreaks
 * List of outbreaks

Blogs and letters

 * ME/CFS is NOT Depression. Lack of energy, not desire.
 * Open Letters: Patients, doctors, researchers, advocates, caretakers and other interested parties have been writing!

Other resources

 * Verywell FMS/CFS Well written articles on ME/CFS and Fibromyalgia.