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?
Prevalence estimates for ME/CFS range between 0.2-2.4%, depending on the definition of the condition. 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.

ME is a debilitating illness that has been recognised as a neurological condition by the World Health Organisation (WHO) since 1969.

ME vs CFS vs CF

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

There is disagreement 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. Additionally, 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 (eg: US, Australia) use CFS, and other countries (particularly in Europe) use ME. At this point in time, there is no clear evidence to resolve this issue, 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.


 * ME/CFS Diagnosis and Name (video)

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 and 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, it is but one of many. Many consider Post Exertional Malaise (PEM), rather than fatigue, to be the cardinal feature of ME/CFS (CCC/ICC/IOM).

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 (IOM ref). 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.


 * Brain inflammation
 * Reduced brain white matter
 * Immune findings
 * NK 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: EBV, Q Fever (Ebola?)
 * Non-viral triggers - trauma, chemical

Persistence hypotheses

 * Immune findings

Recovery

 * Patients do not generally get better
 * PACE recovery results over-state
 * Severe patients often invisible

Treatments
There are currently no FDA approved treatments for ME/CFS. Treatments consist mostly of symptom management (cite 2014 Clinical Primer), 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 and patient surveys, which suggest that exercise may actually be harmful for people with ME/CFS.

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.

Energy envelope/pacing - people do better if stay within their envelope, than push to increase activity.
 * ME Association patient survey
 * 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.
 * Exercise should be approached with much caution with people with ME/CFS, as there is much potential for harm.


 * 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 (ref) lists the below 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 (IOM ref). 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

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"

Learn more

 * Institute of Medicine report
 * Canary in a Coal Mine (see trailer)
 * Forgotten Plague (see trailer)