Primer for journalists

Myalgic encephalomyelitis (ME), chronic fatigue syndrome (CFS), and chronic fatigue (CF) are widely misunderstood. In this Primer for journalists, we provide evidence-based statements (with links to further reading & sources) to support journalists writing about the disease. Chronic Fatigue Syndrome must never be shortened to Chronic Fatigue in the body of an article or its headline. This has caused much confusion for readers who do not understand CFS is a debilitating lifelong illness and it is not the same as chronic fatigue (CF); CF is a symptom of many different illnesses. Although the Fukuda and the Oxford Criteria are used for diagnosing CFS, they are both overly broad and there is criticism that patients are being misdiagnosed in both clinical and research settings as having CFS when in fact they are suffering from the symptom CF or another fatiguing diagnosis.

There have been media reports of athletes diagnosed with ME or CFS who have recovered in a relatively short period of time after rest, supplementation, and diet changes; these athletes may have had overtraining syndrome (which has the symptom of chronic fatigue) and not ME or CFS, while people with adrenal failure, idiopathic chronic fatigue or other fatiguing illnesses may be erroneously diagnosed with CFS. ME and CFS in professional athletes is normally a career-ending diagnosis.

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What is ME/CFS By Open Medicine Foundation - OMF. Linda Tannenbaum, Founder & CEO/President, talks about ME/CFS and how OMF is leading research and delivering hope (2018)

The core ME/CFS symptoms are: chronic fatigue (CF); post-exertional malaise (PEM); unrefreshing sleep/sleep problems; and cognitive impairment/brain fog and/or orthostatic intolerance (OI). A patient can have many more symptoms and meet different criteria. Systemic Exertion Intolerance Disease (SEID), an ME/CFS criterion, allows for a patient to be diagnosed with the minimum core symptoms and the patient may have other symptoms. The Canadian Consensus Criteria (CCC) requires the core symptoms and neurological, autonomic, neuroendocrine, immune system, and myalgia symptoms to meet its ME/CFS diagnostic criteria. The International Consensus Criteria (ICC) is used to diagnose myalgic encephalomyelitis (ME) which requires the core symptoms and neurological, immune/gastrointestinal/genitourinary impairment, and energy metabolism/ion transport impairment symptoms for a diagnosis.

The acronym ME/CFS is widely used in research, by clinicians, patient organizations, and patients.

"The most common overlapping condition with ME/CFS is fibromyalgia." While some have posited ME/CFS and fibromyalgia are variants of the same illness, Benjamin Natelson, MD summoned considerable amounts of data that suggest the two illnesses differ with different pathophysiologic processes leading to different treatments.

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. The Centers for Disease Control and Prevention (CDC) website states "ME/CFS is a biological illness, not a psychologic disorder" and impacts multiple body systems. The CDC recognizes the hallmark symptom of PEM which is a worsening of symptoms after physical, mental or emotional exertion and says ME/CFS is a "disabling and complex disease." 

Diagnostic Algorithm for SEID's minimum ME/CFS core symptoms

What do we know?

ME is a debilitating illness that has been recognized as a neurological disease by the World Health Organization (WHO) since 1969.

It is a systemic neuroimmune disease characterized by post-exertional malaise (PEM) (a severe worsening of symptoms after even minimal exertion). It causes dysregulation of both the immune system and the nervous system. The effects of ME are devastating enough to leave 25% of patients housebound or bedbound. For moderate to severe patients, the disability of living with ME is like living with late-stage cancer, advanced stage AIDS, or congestive heart failure for decades.

In many parts of the world, it is commonly called chronic fatigue syndrome.

ME/CFS costs the US economy up to $24 billion per year in direct medical costs, and lost production. Despite this, funding for research is not commensurate with the level of disease burden. In the 2015 financial year, the National Institutes of Health (NIH) provided only $5 million in research funding for ME/CFS, which is less funding than hayfever. This is in stark contrast to funding levels for other similarly disabling illnesses, like multiple sclerosis ($105 million) and HIV/AIDS ($3 billion). The Institute of Medicine, a special advisory committee of the U.S. Department of Health and Human Services (HHS) (ref: CFSAC recommendations) and NIH expert advisory panel agree that it is imperative to increase research funding into ME/CFS.

Disease onset and course of illness

ME/CFS can begin from many acute/sudden events: usually viral or bacterial infections, but also trauma, surgery or childbirth, allergic reaction, and stress. There is also a gradual onset in some people, that is not attributed to any one event. Occasionally, ME/CFS has been triggered by environmental toxins or the receipt of an immunizing injection. Some say that the disease ME always has an acute/sudden infectious onset.

The disease ME/CFS is often diagnosed when a person does not recover from a flu-like illness, mononucleosis or another herpesvirus, Q fever, an unidentified virus, or other infection, and meets one or more diagnostic criteria for either ME, CFS, or ME/CFS. Patients experience numerous symptoms and disease severity which fluctuate from day to day, week to week, month to month, year to year, and even decade to decade. Furthermore, symptoms and disease severity vary among patients.

The CDC recognizes that there can be different causes and it is possible that two or more things could cause the illness. Areas of research include infections, immune system changes, physical or psychological stress affecting body chemistry, changes in energy production, and a possible genetic link. The CDC notes there are abnormalities with the immune system, cellular metabolism, neuroendocrine disturbances, and blood pressure or heart rate regulation.

Not a mental health disorder

In the past, CFS was believed to be a mental health disorder. This is why the CDC now states: "ME/CFS is a biological illness, not a psychologic disorder. Patients with ME/CFS are neither malingering nor seeking secondary gain. These patients have multiple pathophysiological changes that affect multiple systems."

No clear evidence that ME/CFS is contagious

Infectious episodes have led to outbreaks over the years and 72% of ME/CFS patients report an onset of a viral or bacterial infection. Nowadays, the vast majority of ME/CFS cases are sporadic rather than epidemic - although some outbreaks have been caused by known viruses such as the SARS pandemic and COVID-19 - there is no clear evidence that sporadic ME/CFS cases are contagious.

Families, partners, and friends do not report contracting ME/CFS from someone with the disease nor do patients report passing it on to others. However, Underhill and O'Gorman (2006) researched 219 patients with ME/CFS, and concluded that close household contact and genetics were both risk factors for CFS, finding 3.2% of spouses/partners of those with CFS also had the illness. This was a higher prevalence than all genetic relatives except children of patients. Because ME/CFS can run in families, a genetic link is a line of research recommended by the CDC.

Michael Sikora and collaborators at the Open Medicine Foundation hope that their research on the role of T cells and immune-related genes will help address "whether ME/CFS is an autoimmune or infectious disease, or simply an activation of the immune system".

Blood donation and organ transplant

A tissue and blood donation ban is in force for ME/CFS in the United Kingdom (even if recovered), Australia, New Zealand, most of Canada, and for a time also in the United States, initially due to the research on XMRV as being the likely infectious trigger of CFS and showing that patients carried the virus. Two papers on XMRV were retracted as the result was caused by laboratory contamination, but many blood donation bans remain.

The US American Red Cross no longer has statements barring transfusions or transplants for CFS, but patients are expected to be in "good health" which would exclude most. The American Association of Blood Banks advises to either accept or defer ME/CFS donors based on "clinical judgment of the donor's health status". Patient charities discourage ME/CFS patients from donating blood,

Mini-Docs

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By Jen Brea/TED (2016)

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

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 illness, 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.

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By Veronica Weber/Palo Alto Online (2015)

Invisible Illness - Stories of Chronic Fatigue Syndrome By Veronica Weber/Palo Alto Online

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

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By Dr. David Kaufman/Unrest (2018)

Diagnosis and Management of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome By Dr. David Kaufman/Unrest

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

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.

• Epidemiology

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

• Female predominant diseases

Like many autoimmune and neuro-immune diseases where mostly women are afflicted, the ME/CFS female/male patient ratio per Capelli et al. is 6:1 while the CDC states 4:1.

• Pediatric

Pediatric ME/CFS is defined by the CDC and the National Academy of Medicine (NAM) although it is usually diagnosed in adults. "Children below the age of 8 or 9 do not have the symptom pattern of adolescents past puberty. If the onset of the disease occurs during adolescence, the most common time of onset, the pattern is similar to that of adults." The prognosis in adolescents is considered to be better than in adults. Children are diagnosed with ME/CFS at three months of illness under SEID and CCC and ME is diagnosed immediately under ICC.

• Prevalence

"Worldwide, there may be as many as 17 – 24 million people with ME/CFS." 25% of ME/CFS patients are housebound or bedbound at some point in their illness. 90% of patients are undiagnosed.

• Prognosis

The prognosis for a patient diagnosed with ME/CFS is considered to be poor with only a minority (a median estimate of 5%) returning to pre-morbid levels of functioning. The majority of patients remains significantly impaired. A substantial improvement however is noted in an estimated 40% of patients.

ME vs CFS vs CF

The name myalgic encephalomyelitis (ME) was coined following an outbreak of an illness at the Royal Free Hospital in the UK, in 1955. The name chronic fatigue syndrome (CFS) was coined by the Centers for Disease Control and Prevention (CDC) following an outbreak of a flu-like illness at Incline Village, at Lake Tahoe, in the 1980s. There is disagreement as to whether ME and CFS are the same disease, entirely separate illnesses, or whether ME constitutes a more severe subset of CFS. Adding to the confusion, the diagnostic name given to patients is more often dependent on the country in which they live, than differing characteristics of their illness, as some countries use CFS (eg: US, Australia), and other countries (particularly in Europe) use ME. At this point in time, there is no clear biological evidence to resolve whether the illnesses are the same or different, and there is unlikely to be a resolution until firm biomarkers have been identified. As such, many patients and researchers use the term ME/CFS. See: Definitions of ME and CFS.

The name Chronic Fatigue Syndrome is itself controversial, as many consider it stigmatizing. In February 2016, Dr Anthony Komaroff, who was part of the CDC group of clinicians who coined the name Chronic Fatigue Syndrome, said of it:

"I think that was a big mistake because the name, in my opinion, and the opinion of a lot of people, it both trivializes and stigmatizes the illness. It makes it seem unimportant, maybe not even real"

It is important to distinguish between ME/CFS and chronic fatigue (CF), which is a symptom of many different medical conditions (e.g.: anemia, hepatitis, multiple sclerosis, hypothyroidism, depression, ME/CFS). "Chronic fatigue" is not an illness in its own right and it is incorrect and misleading to refer to ME/CFS as "chronic fatigue". While fatigue is a component of ME/CFS, many consider post-exertional malaise (PEM) to be the cardinal feature of ME/CFS.

Evidence of a disease

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 the core symptoms found in all patients.

Post-exertional malaise (PEM) is a worsening of ME/CFS symptoms after minimal physical, mental or emotional exertion. Worsening symptoms may include chronic fatigue; flu-like symptoms, brain fog/cognitive dysfunction, and word-finding problems, unrefreshing sleep, headaches and migraines, chronic pain, muscle pain and muscle fatigability, orthostatic intolerance, neurally mediated hypotension, or POTS and more. The onset of PEM can be delayed 24-72 hours and depending on ME/CFS severity can last days, weeks, or even months

Rosa age 25 in 1986 and mildly ill with ME/CFS's core symptoms. In 2015 the SEID criteria were released. Rosa read about PEM and how it is delayed and makes ME/CFS symptoms like CF, OI, and cognition worse. Her life since age 17 fell into place as she never connected her worsening symptoms with increased physical or mental activity 24-72 hours prior. She believes not understanding PEM made her illness worsen over the years and is now disabled meeting the CCC with PEM.

Brian Vastag is an American and award-winning journalist and an ME/CFS patient that won a disability case against Prudential, proving that PEM is a severe symptom that keeps him from gainful employment

I think #TwoFacesofME is a really important hashtag. We’re only out and about at our best, and our (more frequent) worst often remains hidden. I’m convinced it’s why #MEcfs research funding is so low - the problem isn’t visible enough. I’m seriously ill in both these photos.

First photo, me in my wheelchair on a rare trip out. Second photo, the inevitable crash. Eye half closed, slurred speech, dizzy, weak, etc. #TwoFacesofME

#TwoFacesofME First photo from the morning, the other one from the afternoon ( when I failed to nap 30-60 minutes). I am Not severely ill, and my life is ok, even [so] I wish that one day science will help me & all the #MeCfs sufferers around the globe.

• Post-exertional malaise (PEM) is the hallmark symptom of ME/CFS. After physical, mental or emotional 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 significant worsening ME/CFS symptoms which can be delayed for 24-72 hours or more and can last 24 hours and even days, weeks, or months. 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).

• chronic fatigue
• cognitive dysfunction

• orthostatic intolerance (OI) such as postural orthostatic tachycardia syndrome (POTS) or neurally mediated hypotension (NMH)
• unrefreshing sleep/sleep disturbance

Other possible symptoms

• chronic pain
• immune system
• neurological signs and symptoms See also: neuroinflammation.
• List of symptoms in ME/CFS

Comorbids

• fibromyalgia (FMS)
• irritable bowel syndrome (IBS)
• multiple chemical sensitivity (MCS)
• temporomandibular joint disorder (TMJ)

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

Biological abnormalities

Because there is currently no biomedical test for ME/CFS, many have incorrectly assumed that there are no medical abnormalities found in people with the illness. As a result, ME/CFS symptoms are often considered to be medically unexplained, and therefore psychological in origin. While it is true that the illness is poorly understood, many biological abnormalities have been found in a range of different body systems, particularly in the central nervous system, autonomic nervous system, immune system, and energy metabolism. Unfortunately, none have yet proved to be specific enough to ME/CFS as to be useful as a biomarker of the disease, and many were identified in small studies, which need replication. Whilst there have been many abnormalities identified found to be associated with the disease, it cannot yet be determined whether these are a cause or consequence.

• Gastrointestinal system
• Natural killer cell

Notable studies

• Cytokine ("Notable studies")
• Immune findings by Mady Hornig & Ian Lipkin
• List of enterovirus infection studies

• 2014, Neuroinflammation Japanese Neuroinflammation study
• 2015, Daily cytokine fluctuations, driven by leptin, are associated with fatigue severity in chronic fatigue syndrome: Evidence of inflammatory pathology - (Full text)

Younger's Leptin study

• 2014, Right Arcuate Fasciculus Abnormality in Chronic Fatigue Syndrome

Bilateral white matter atrophy is present in CFS. No differences in perfusion were noted. Right hemispheric increased FA may reflect degeneration of crossing fibers or strengthening of short-range fibers. Right anterior arcuate FA may serve as a biomarker for CFS.

• 2014, Brains of People With Chronic Fatigue Syndrome Offer Clues About Disorder By David Tuller - New York Times: Well

Top scans: Healthy control patient; Bottom scans: chronic fatigue syndrome (CFS) patient. Image By: Michael Zeineh

• 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 (TALK)

Causes & triggers

• Outbreaks - see List of outbreaks
• Possible infectious triggers: Enteroviruses, Epstein-Barr virus, Q fever, Ross River virus, mononucleosis, (Ebola?)
• Non-viral triggers - trauma, chemical

Tests

• Natural killer cell (NKC) Blood Test
• Sleep study for sleep apnea, restless leg syndrome, and other sleep disturbances.
• Tilt table test for OI or POTS.

Treatments

There are currently no Food and Drug Administration (FDA) approved treatments for ME/CFS. Treatments consist mostly of symptom management, rather than treatment of the underlying cause of the disease, 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

Ampligen

Two treatments that have garnered much attention are Ampligen, produced by AIM ImmunoTech (formerly Hemispherx Biopharma), and Rituximab. Many people have reported improvements from Ampligen, and a few recovered but relapsed when they stopped taking it.

Attempts to obtain FDA approval for Ampligen in the US have failed, but it is available to some people on compassionate use. Argentina approved the use of Ampligen for severe ME/CFS in 2016. Also in 2016, it was made available on a limited basis in Europe. In July 2018, AIM ImmunoTech announced the expansion of its US compassionate use program, AMP-511, to new ME/CFS patients for the first time in over a year.

Rituximab, a lymphoma drug, had shown promising results in initial trials in Norway, and there were groups crowdsourcing funding for further trials in other countries. In 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. A phase III trial published in 2019 showed Rituximab does not improve ME/CFS.

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

Treating other conditions

Different forms of OI are treated with beta-blockers (Metopropol), Fludrocortisone (Florinef), and Pyridostigmine. When treating other diseases, illnesses, and conditions, and ME/CFS comorbidities or overlapping conditions such as sleep difficulties, cognitive problems, pain, and other symptoms it is important to remember that patients are sensitive to medications. The CDC advice to health care practitioners is to be aware that because all drugs can cause side effects, ME/CFS patient symptoms can worsen. "This is particularly true of any medication that acts on the central nervous system, such as sedating medications: therapeutic benefits can often be achieved at lower-than-standard doses. Patients with ME/CFS might tolerate or need only a fraction of the usual recommended doses for medications. After initial management with lower dosing, one or more gradual increases may be considered as necessary and as tolerated by the patient." For instance, tricyclic drugs can improve mood and help with sleep and pain. However, in some in can worsen OI.

Exercise as treatment

Jennifer Brea is an American who was studying at Harvard; while on a trip to Kenya she became very ill with what would eventually be diagnosed as ME/CFS. Brea began experiencing neurological problems. Her neurologist diagnosed her with "conversion disorder" (hysteria). When walking home from his office, she collapsed. Jen then needed to use a wheelchair keeping her legs up due to POTS as her blood pooled into her legs

.

Previously, two common treatment recommendations for ME/CFS were graded exercise therapy (GET) and cognitive behavioral therapy (CBT). These treatments are based on disproven the hypothesis that the disease might have begun with a viral infection but has been perpetuated by deconditioning from lack of activity, and fear and avoidance of activity. GET and CBT are aimed at addressing these hypothesized causes by challenging the proposed unhelpful thoughts that result in avoidance of activity and reconditioning through a gradual increase in exercise. These treatments are controversial and are at odds with much of the research literature, which suggests that exercise is harmful to people with ME/CFS. A large patient survey of treatment responses found that 74% of people who had tried GET, reported that their symptoms subsequently worsened, which is consistent with other patient surveys and many research findings.

The PACE trial, published in 2011, is the largest GET trial ever conducted. It has received much publicity as a result of its recovery rate claims, though it has come under strong criticism from within both the scientific and patient community for significant flaws in its design, and for overstating (and in some cases misrepresenting) outcomes in both the initial trial, and follow-up studies. From 2015 to present day, the study was the subject of a series of investigative pieces that were highly critical of the trial by journalist Dr. David Tuller, science writer Julie Rehmeyer, patient advocate Tom Kindlon, Dr. Keith Geraghty, psychologist Carolyn Wilshire and others. A petition signed by almost 12,000 ME/CFS patients and allies, and an open letter signed by 42 ME/CFS experts from around the world, were sent to The Lancet, both calling for the data to be reanalysed. Twenty-four ME/CFS organizations from 14 different countries have written to Queen Mary University London requesting that the trial data be released for reanalysis. To date, the authors of the trial and editor of The Lancet have refused such requests. Despite such criticism, the PACE trial continues to influence both government and the medical profession's approach to the treatment of ME/CFS in many countries.

One of the reasons that exercise may be harmful to people with ME/CFS, is the presence of post-exertional malaise (PEM), which is an exacerbation of symptoms following physical, mental or even emotional exertion. Studies have revealed immunological, muscular, neurological, autonomic and cardiovascular abnormalities in response to exercise in people with ME/CFS. As these results are not also found in healthy sedentary controls, the adverse effects of exercise cannot be said to be due to deconditioning.

People with ME/CFS should approach exercise with caution, as there is much evidence of potential for harm.

Anaerobic threshold, use of heart rate monitors for activity and pacing. Analeptic, not aerobic. Energy envelope/pacing - people do better if stay within their envelope, than push to increase activity

Graded exercise therapy & Cognitive behavioral therapy

Emma Shorter, is a citizen of Scotland. Here, she gives testimony before Parliament's Petitions Committee on GET and how it put her in a wheelchair

.

GET and CBT have been recently abandoned in the UK, Ireland and many parts of Europe by 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 harm an ME/CFS patient further.

• Jennifer Brea walked home from her Neurologist's office and became wheelchair-bound.
• This is an experience of serious harm 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.
• Dr Maik Speedy was also seriously injured by GET and has been bedbound since.
• British MP Brynmor John collapsed outside the House of Commons gym in 1998 and died, as a result of following his doctor's advice to exercise back to health.

Claims of recovery and cures

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). 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, there have been media reports of some athletes―usually amateur athletes,―diagnosed with CFS that recovered after a relatively short period of time with rest, supplementation, and diet changes, but they may have had overtraining syndrome, while some people with adrenal failure, idiopathic chronic fatigue or another fatiguing illness may be erroneously diagnosed with CFS ME and CFS in professional athletes normally results in very premature retirement.

Severely ill patients

Considerable variation exists in the severity of the disease. The International Consensus Criteria lists the following severity levels (it should be noted that even "mild" ME/CFS consists of significant debility):

• Mild = 50% reduction in pre-illness activity levels
• Moderate = mostly housebound
• Severe = mostly bedridden
• Very Severe = totally bedridden, and needing help with basic functions.

At least 25% of people with ME/CFS are bedbound or housebound, often for years or even decades, so are largely an invisible population. So invisible in fact, that they have rarely been included as part of research because their level of debility precludes them from traveling to laboratories for required testing. The Open Medicine Foundation's ME/CFS Severely Ill, Big Data Study will be the first in-depth study of people with a severe form of ME/CFS. This study has so far produced the groundbreaking paper Metabolic features of chronic fatigue syndrome. It is estimated that 25% of ME/CFS patients are severely ill and are housebound or bedbound.

Notable patients with severe or very severe ME/CFS include Whitney Dafoe, Karina Hansen, Lynn Gilderdale, Laura Hillenbrand, Tom Kindlon, Vanessa Li, Doctor Speedy, Naomi Whittingham, Jamison Hill and Jessica Taylor-Bearman.

Though uncommon, there have been instances of deaths which have been attributed to the disease (see Sophia Mirza, Merryn Crofts). National Statistics report an average of 10 - 12 deaths per year in England and Wales partly or fully caused by ME/CFS, with almost all patients dying being of working age.

Patients and psychiatry/psychology

• Objections and scope
• Mind-body dualism
• Psychologization
• Cognitive behavioral therapy
• The PACE trial. See Patient view of the PACE Trial controversy
• Ethical issues
• Patient mental health

Stigmatization

• Pretty young women slumped on desk
• Yuppie Flu
• Accusations of laziness/lethargy
• Epidemiological evidence - age, gender, demographic, racial/cultural
• Stigma and discrimination

Accusations of harassment

• No arrests or convictions
• Potential harassment and "wild speculations" about threats to researchers were unsuccessful arguments used in Queen Mary University of London's failed attempt to deny access to the PACE trial data at the 2015 tribunal. The tribunal judgement stated that the only evidence of harassment provided was a single heckler in a single seminar.

• Mistreatment of patients, including forced harmful treatment of children, is not mentioned. E.g., the story of "B", aged 8, and Ean Proctor and others "The Mental Health Movement: Persecution of Patients?"

• A pattern of intimidation and bullying of PACE trial critics has included targeting scientists' employers, professional bodies, politicians including the Countess of Mar, and smear tactics in the national press.

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. The MEAction Network 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.

• Feb 25, 2019, Dr. Elizabeth Unger, Chief of CDC's Chronic Viral Disease Branch (CVDB), that houses the ME/CFS program, in collaboration between Medscape and the CDC put out brief video and commentary page with links to the CDC's July 12th, 2018 updates for medical professionals: Chronic Fatigue Syndrome: It's Real, and We Can Do Better.

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.

Expert opinions

Quotes from ME/CFS experts and patients

• Individual quotes
• Thoughts About ME - List of Quotes

Doctors

UK

• Jonathan Edwards
• Charles Shepherd

US

• Lucinda Bateman
• Lily Chu
• David Kaufman
• Nancy Klimas
• Anthony Komaroff
• Susan Levine
• Jose Montoya
• Benjamin Natelson
• Daniel Peterson
• Alan Pocinki
• Peter Rowe
• Ronald Tompkins
• David Tuller

Researchers

Australia

• Neil McGregor

UK

• Keith Geraghty

US

• Ron Davis
• Gunnar Gottschalk
• Maureen Hanson
• Mady Hornig
• Leonard Jason
• Betsy Keller
• Ian Lipkin
• Staci Stevens
• Suzanne Vernon
• Jarred Younger

Patients

Australia

Canada

• Scott Simpson

Scotland

• Emma Shorter

US

• Jennifer Brea
• Carol Head
• Ryan Prior
• Julie Rehmeyer
• Jaime Seltzer

UK

• Adam Lowe
• Graham McPhee
• Jessica Taylor-Bearman

Ireland

• Tom Kindlon

Patient groups & charities

Patient groups

• American patient groups
• Australian patient groups
• Belgian patient groups
• British patient groups
• Canadian patient groups
• Dutch patient groups
• Irish patient groups
• Italian patient groups
• New Zealand patient groups
• Norwegian patient groups
• Scottish patient groups
• Swedish patient groups

Photos

• Stock photographs suitable for ME/CFS articles - curated by Phoenix Rising
• Advice on photograph choice

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 further reports of loved ones who have died due to ME/CFS. See Editor's Note

Other tips and articles for journalists

• 2021, How to Report with Accuracy and Sensitivity on Contested Illnesses - by ME/CFS patient and science writer Julie Rehmeyer, Open Notebook
• Always interview a patient
• Interview more than one researcher (not just from the psychological etiology view)
• Avoid using derogatory, outdated & incorrect term "Yuppie Flu"
• Never shorten the disease name chronic fatigue syndrome (CFS) to the symptom chronic fatigue (CF). CFS, ME or ME/CFS can be used to save print space.
• Use photographic imagery that represents the reality for patients - serious illness & disability - not well-groomed & slightly tired office workers at their computer or students with a pile of books sleeping at their desk. Solve ME/CFS Initiative's Times Square Public Awareness Ad shows the reality of the disease ME/CFS. Using photos of patients whether chronically ill yet functioning or a severely ill patient or stock photos that reflect life with this disease is necessary.

See also

Articles for journalists covering Long COVID.

Learn more

Key facts

• Key Facts - Institute of Medicine (2015)

Research

• Institute of Medicine report (2015) The CDC based its updated ME/CFS page on information in this report.
• Notable studies

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)

ME/CFS organization and researchers material

• Beyond the Data – Chronic Fatigue Syndrome: Advancing Research and Clinical Education (The CDC's Dr. John Iskander interviews Dr. Anthony Komaroff. Video, 2016)
• Caring for People with Myalgic Encephalomyelitis (2018) Guide for Caretakers
• ME/CFS Diagnosis and Name with Dr Nancy Klimas (video)
• What is ME/CFS? By the Open Medicine Foundation

Patient mental health

Patients that had been deemed as suffering from mental health and not a biological illness:

• 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; she then died of ME.
• 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 of a pool to make him swim and another time put him on a scary theme park ride to scare him into moving.

More mental health information

• ME/CFS is not depression. It causes a lack of energy, not a lack of desire.

See also

• Primer for the public (Disease names and acronyms around the world section)

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.

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.

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.

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).

systemic exertion intolerance disease (SEID) - A term for ME/CFS that aims to avoid the stigma associated with the term "chronic fatigue syndrome", while emphasizing the defining characteristic of post-exertional malaise (PEM). SEID was defined as part of the diagnostic criteria put together by the Institute of Medicine (IOM) report of 10 February 2015.

Canadian Consensus Criteria (CCC) - A set of diagnostic criteria used to diagnose ME/CFS, developed by a group of practicing ME/CFS clinicians in 2003. The CCC is often considered to be the most complex criteria, but possibly the most accurate, with the lowest number of patients meeting the criteria. Led to the development of the International Consensus Criteria (ICC) in 2011.

International Consensus Criteria (ICC) - A set of diagnostic criteria, based on the Canadian Consensus Criteria, that argued for the abandonment of the term "chronic fatigue syndrome" and encouraged the sole use of the term "myalgic encephalomyelitis".

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.

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.

World Health Organization (WHO) - "A specialized agency of the United Nations that is concerned with public health. It was established on 7 April 1948, and is headquartered in Geneva, Switzerland. The WHO is a member of the United Nations Development Group. Its predecessor, the Health Organization, was an agency of the League of Nations." The International Statistical Classification of Diseases and Related Health Problems (ICD) is maintained by WHO.

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.

neuroendocrine relating to hormones that influence the nervous system

heart rate (HR) - the number of times the heart beats within a certain time period, usually a minute

myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

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).

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.

flare-up A symptoms flare in ME/CFS is a temporary increase in symptoms, alternatively known as experiencing post-exertional malaise. May be referred to as a "crash" or "collapse".

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).

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).

cytokine any class of immunoregulatory proteins secreted by cells, especially immune cells. Cytokines are small proteins important in cell signaling that modulate the immune system. (Learn more: me-pedia.org)

atrophy A decrease in size or wasting away of a body part, e.g. muscle wasting or progressive decline. (Learn more: me-pedia.org)

phase three Last phase of clinical trials before a drug can be approved for public use. Whereas Phase one assesses basic safety, and Phase two assesses basic efficacy, Phase three uses many trial participants to fully assess both safety and efficacy, and overall benefit/risk.

β β / Β. Greek letter beta (a symbol used in science), equivalent to "b".

cognition Thought processes, including attention, reasoning, and memory.

adverse reaction Any unintended or unwanted response to a treatment, whether in a clinical trial or licensed treatment. May be minor or serious.

somatic symptom disorder A psychiatric term to describe an alleged condition whereby a person's thoughts somehow cause physical symptoms. The actual existence of such a condition is highly controversial, due to a lack of scientific evidence. It is related to other psychiatric terms, such as "psychosomatic", "neurasthenia", and "hysteria". Older terms include "somatization", "somatoform disorder", and "conversion disorder". Such terms refer to a scientifically-unsupported theory that claims that a wide range of physical symptoms can be created by the human mind, a theory which has been criticized as "mind over matter" parapsychology, a pseudoscience.

PACE trial A controversial study which claimed that CBT and GET were effective in treating "CFS/ME", despite the fact that its own data did not support this conclusion. Its results and methodology were widely disputed by patients, scientists, and the peer-reviewed scientific literature.

heart rate monitor (HRM) - A device that measures your heart rate (pulse rate). Heart rate monitors may come as a chest strap, wrist strap, smartwatch, or even as a mobile phone app. Heart rate monitors are often used by ME/CFS patients to pace their exertion, in order to avoid post-exertional malaise (PEM). For more information, see pacing with a heart rate monitor.

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.

etiology The cause of origin, especially of a disease.

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).

myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

chronic disease a disease or condition that usually lasts for 3 months or longer and may get worse over time. Chronic diseases are long-term (typically incurable and requiring long-term management) but are not necessarily severe.

BMJ The BMJ (previously the British Medical Journal) is a weekly peer-reviewed medical journal.

PACE trial A controversial study which claimed that CBT and GET were effective in treating "CFS/ME", despite the fact that its own data did not support this conclusion. Its results and methodology were widely disputed by patients, scientists, and the peer-reviewed scientific literature.

bias Bias in research is "a systematic deviation of an observation from the true clinical state". (Learn more: me-pedia.org)

NICE guidelines Clinical guidelines used in the UK.