Primer for journalists

Myalgic Encephalomyelitis (M.E.), Chronic Fatigue Syndrome (CFS) and chronic fatigue are widely misunderstood. In this primer we provide evidence-based statements (with links to further reading & sources) to support journalists writing about the disease.

What do we know?
ME is a debilitating illness that has been recognised as a neurological condition by the World Health Organisation (WHO) since 1969. Prevalence estimates for ME/CFS range between 0.2-2.4%, depending on the definition of the condition used. In the US, estimates range between 836,000 and 2.5 million people with the condition, though true numbers are under reported. It is estimated that 84-91% of people with the condition remain undiagnosed.

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.

ME vs CFS vs CF

 * Chronic Fatigue Syndrome (CFS) - broad, heterogenous, can exclude severe
 * Myalgic Encephalomyelitis (ME). Royal Free Hospital outbreak 1955, ICC, CCC.

There is disagreement as to whether Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) are the same condition, entirely separate conditions, 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 condition, 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 conditions 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.

The name Chronic Fatigue Syndrome is itself controversial, as many consider it stigmatising. In February 2016, Dr Anthony Komaroff, who was part of the Centers for Disease Control (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 trivialises and stigmatises 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 (eg: anaemia, Hepatitis, Multiple Sclerosis, hypothyroidism, depression, ME/CFS). "Chronic fatigue" is not a condition in its own right and it is incorrect and misleading to refer to ME/CFS as "chronic fatigue". Whilst fatigue is a component of ME/CFS, many consider Post-exertional malaise (PEM) to be the cardinal feature of ME/CFS.

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 condition. As a result, ME/CFS symptoms are often considered to be medically unexplained, and therefore psychological in origin. Whilst it is true that the condition is poorly understood, many biological abnormalities have been found in a range of different body systems that have been found in ME/CFS, 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 condition, and many were identified in small studies, which are in need of replication. Whilst there have been abnormalities which have been identified to be associated with the condition, it cannot yet be determined whether these are a cause or consequence of the condition.


 * Neuroinflammation Japanese Neuroinflammation study, Younger's Leptin study
 * Reduced brain white matter study by Stanford ME/CFS Initiative New York Times Article with brain images.
 * Immune findings: Mady Hornig & Ian Lipkin
 * Autonomic nervous system:
 * Natural killer cell findings
 * Gut dysbiosis
 * Rituximab

Epidemiology

 * Incidence & Prevalence
 * Level of disability (Norwegian study HRQoL) (suggests quality of life is LOWER than for many cancers, heart diseases, brain stroke, diabetes I & II, rheumatoid arthiritis, chronic renal failure, sclerosis, schizophenia, COPH, etc)

Causes & triggers

 * Outbreaks - see List of outbreaks
 * Known infectious triggers: Epstein-Barr Virus, Q Fever , Ross River Virus , (Ebola?)
 * Non-viral triggers - trauma, chemical

Persistence hypotheses

 * Immune findings

Prognosis
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.

Treatments
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.

Exercise as treatment
Two common treatment recommendations for ME/CFS are Graded Exercise Therapy (GET) and Cognitive Behaviour Therapy (CBT). These treatments are based on the hypothesis that the condition might have begun with a viral infection, but has been perpetuated by deconditioning from lack of activity, and fear and avoidance of activity. GET & CBT are aimed at addressing these hypothesised causes by challenging the 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 may actually be harmful for 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.

The PACE trial, published in 2011, is the largest GET trial ever conducted. It has received much publicity as a result of its claims of recovery rates, though it has come under strong criticism from within both the scientific and patient community, for significant flaws in its design. The study was the subject of a series of investigative pieces by journalist David Tuller in late 2015, that were highly critical of the trial. A petition signed by almost 12,000 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 organisations from 14 different countries have written to Queens Mary College 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.

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.

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

Energy envelope/pacing - people do better if stay within their envelope, than push to increase activity.
 * flaws in exercise studies (patient selection (definition used); subjective measures vs objective measures; not using actimeters, so difficult to tell if people have reduced other activity in order to accommodate the exercise into their lives.
 * Exercise study findings do not support the deconditioning hypothesis (eg: PACE: after 12 months, participants had not achieved a fitness level similar to healthy adults, but only a very slight improvement).
 * Workwell Foundation research: 2day CPET and pwME/CFS' physiological response to exercise (& demonstration of PEM). Anaerobic threshold, use of HR monitors for activity and pacing. Analeptic, not aerobic, exercise.
 * Alan and Kathy Light: epigenetic changes in response to exercise.


 * Deviant Cellular and Physiological Responses to Exercise in Myalgic Encephalomyelitis and Chronic Fatigue Syndrome

Severely ill patients
Considerable variation exists in the severity of the condition. 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. Though uncommon, there have been instances of deaths which have been attributed to the condition.


 * Invisible
 * Examples
 * Deaths

Patients & psychiatry/psychology

 * Objections & scope
 * Mind-body dualism
 * The PACE trial. See Patient view of the PACE Trial controversy
 * Patient mental health

Stigmatization

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

Accusations of harassment

 * Tiny %
 * No arrests or convictions
 * Poor treatment of patients not mentioned

Quotes from ME/CFS experts
http://thoughtsaboutme.com/quotes/

Doctors for expert opinions


Researchers


Patients


Patient groups & charities


Other tips

 * Always interview a patient
 * Interview more than one researcher (not just from the psychological aetiology 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.

Learn more

 * ME/CFS Diagnosis and Name with Dr Nancy Klimas (video)
 * Institute of Medicine report
 * Canary in a Coal Mine (see trailer)
 * Forgotten Plague (see trailer)