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.

CFS vs ME vs CF

 * Chronic fatigue is a symptom, not the disease. It is incorrect to refer to the illness as "chronic fatigue".
 * Chronic Fatigue Syndrome (CFS) - broad, heterogenous, can exclude severe
 * Myalgic Encephalomyelitis (ME). Royal Free Hospital 1955, ICC, CCC.

There is disagreement about 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. At this point in time, there is no clear evidence to resolve this issue. As such, many patients and researchers use the term ME/CFS.

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 the condition as "Chronic Fatigue". Whilst fatigue is a component of ME/CFS, it is but one of many. Many consider Post Exertional Malaise (PEM) to be the cardinal feature of ME/CFS, not fatigue.

Biological abnormalities
"Poorly understood condition" "Medically Unexplained Symptoms" "no biomarkers" Correlations found, just not causation.
 * Brain inflammation[REFERENCE, Japanese study)
 * Reduced brain white matter[REFERENCE]
 * Immune findings
 * NK findings
 * Gut dysbiosis
 * Rituximab

Epidemiology

 * Incidence & Prevalence
 * Level of disability (Norwegian study)

Causes & triggers

 * 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

Exercise as treatment

 * Deviant Cellular and Physiological Responses to Exercise in Myalgic Encephalomyelitis and Chronic Fatigue Syndrome, Frank NM Twisk, Keith J Geraghty, 2015.

Severely ill patients

 * 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

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)