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.

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 * Avoid using derogatory, outdated & incorrect term "Yuppie Flu"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)