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 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." There are an estimated 17 million people with ME/CFS worldwide. 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."

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

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

Unfortunately, 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.

Symptoms

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

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

• Chronic fatigue
• Post-exertional malaise (PEM) This is a Hallmark Symptom of CFS, ME and ME/CFS
• Unrefreshing sleep
• Cognitive dysfunction
• Orthostatic intolerance
• Chronic pain
• Immune system Impairment
• Infection

Expanded lists of symptoms

• What are the symptoms of ME/CFS? By: Solve ME/CFS

• Chronic Fatigue Syndrome Symptoms - The Monster List! By: About.com Health FMS/ME/CFS

• Postural orthostatic tachycardia syndrome (POTS) is a form of Orthostatic Intolerance.

Tests to discuss with your doctor

• Sleep study for Sleep apnea, Restless leg syndrome, Sleep disturbance.
• Tilt table test for Orthostatic intolerance, POTS.
• Natural killer cell

Drugs and treatments

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.

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.

• This is an experience of serious injury due to GET shared by K. Miles, via Tom Kindlon on Twitter.
• Doctor Speedy was also seriously injured by GET.
• Jennifer Brea walked home from her Neurologist's office and became wheelchair bound.

Recommended viewing

Documentary

• Forgotten Plague is a US documentary about Ryan Prior, a journalist with ME/CFS, 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. (2016)

Recommended reading

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

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

• Blood donation
• Definitions of ME and CFS Diagnostic clinical and research criteria for ME, CFS and ME/CFS
• Diagnostic biomarker
• Notable studies
• Outbreaks

See also

• Primer for family, friends and care providers

Other resources

• 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!
• About.com 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.

Centers for Disease Control and Prevention (CDC) - The Centers for Disease Control and Prevention is a U.S. government agency dedicated to epidemiology and public health. It operates under the auspices of the Department of Health and Human Services.

post-exertional malaise (PEM) - A notable exacerbation of symptoms brought on by small physical or cognitive exertions. PEM may be referred to as a "crash" or "collapse" and can last for days or weeks. Symptoms can include cognitive impairments, muscle pain, trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, and others.

post-exertional malaise (PEM) - A notable exacerbation of symptoms brought on by small physical or cognitive exertions. PEM may be referred to as a "crash" or "collapse" and can last for days or weeks. Symptoms can include cognitive impairments, muscle pain, trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, and others.

postural orthostatic tachycardia syndrome (POTS) - A form of orthostatic intolerance where the cardinal symptom is excessive tachycardia due to changing position (e.g. from lying down to sitting up).

orthostatic intolerance (OI) - The development of symptoms when standing upright, where symptoms are relieved upon reclining. Patients with orthostatic intolerance have trouble remaining upright for more than a few seconds or a few minutes, depending upon severity. In severe orthostatic intolerance, patients may not be able to sit upright in bed. Orthostatic intolerance is often a sign of dysautonomia. There are different types of orthostatic intolerance, including postural orthostatic tachycardia syndrome (POTS).

biomedical research basic medical research on organisms, such as humans or other living things, that helps increase medical knowledge. (Learn more: me-pedia.org)

chronic fatigue (CF) - Persistent and abnormal fatigue is a symptom, not an illness. It may be caused by depression, multiple sclerosis, fibromyalgia, chronic fatigue syndrome or many other illnesses. The term "chronic fatigue" should never be confused with the disease chronic fatigue syndrome.

graded exercise therapy (GET) - A gradual increase in exercise or activity, according to a pre-defined plan. Focuses on overcoming the patient's alleged unhelpful illness beliefs that exertion can exacerbate symptoms, rather than on reversing physical deconditioning. Considered controversial, and possibly harmful, in the treatment or management of ME. One of the treatment arms of the controversial PACE trial.

cognitive behavioral therapy (CBT) - A type of psychotherapy geared toward modifying alleged unhealthy thinking, behaviors or illness beliefs. One of the treatment arms used in the controversial PACE trial.

graded exercise therapy (GET) - A gradual increase in exercise or activity, according to a pre-defined plan. Focuses on overcoming the patient's alleged unhelpful illness beliefs that exertion can exacerbate symptoms, rather than on reversing physical deconditioning. Considered controversial, and possibly harmful, in the treatment or management of ME. One of the treatment arms of the controversial PACE trial.

cognitive behavioral therapy (CBT) - A type of psychotherapy geared toward modifying alleged unhealthy thinking, behaviors or illness beliefs. One of the treatment arms used in the controversial PACE trial.

National Institutes of Health (NIH) - A set of biomedical research institutes operated by the U.S. government, under the auspices of the Department of Health and Human Services.

National Academy of Medicine (NAM) - An American non-profit, non-governmental organization which provides expert advice to governmental agencies on issues relating to biomedical science, medicine and health. Formerly known as the Institute of Medicine (IOM).

National Academy of Medicine (NAM) - An American non-profit, non-governmental organization which provides expert advice to governmental agencies on issues relating to biomedical science, medicine and health. Formerly known as the Institute of Medicine (IOM).