Is it "real"?
Sufferers of ME/CFS are sometimes accused of "making their illness up" or it being psychological or psychosomatic. However, this misconception is like believing the world is flat - unscientific and grossly incorrect.
People's beliefs about ME/CFS are important. Telling someone with ME/CFS that their illness is "in their head" or "not real" trivialises their suffering. Like any prejudice or discriminatory view it is incorrect, unfairly stigmatises, and adds to their already considerable burden.
Arguably the misconception arises from a number of places - lack of a diagnostic test, misinterpreted research, discrimination arising from a female majority of sufferers, post-exertional symptoms, limited awareness and education, patterns of remissions and relapse - there are a lot of factors contributing to ME/CFS's stigma.
How do we know ME/CFS is real? Read our top five reasons below.
5 reasons ME/CFS is a "real" illness
Research has demonstrated a number of physical / biomedical abnormalities in patients with ME/CFS, which indicate something other than a psychological illness.
"Strong evidence indicates immunologic and inflammatory pathologies, neurotransmitter signaling disruption, micorobiome perturbation, and metabolic or mitochondrial abnormalities in ME/CFS" - NIH, P2P report 2014
There is a common view that test results for ME/CFS patients are always normal, and this is not true. Whilst standard blood tests sometimes are within normal ranges, more advanced tests used in research context have identified a number of abnormalities (e.g. low Natural Killer Cell count and VO2 abnormalities)
Not classified as psychological
ME/CFS is not classified as a psychological illness.
In New Zealand, ME/CFS is classified as a "nervous system and sense organ disease" by the Government (READ code F286). Globally, the World Heatlh Organisation also classifies ME/CFS as Neurological (G.93.3).
Fatigue is physical
Blood oxygenation tests show that ME/CFS patients fail to recover from exercise after a 24 hour rest! The tests are based on objective biomarkers (as opposed to subjective surveys) and therefore prove that post-exertional fatigue has a physical origin. Learn more here.
This phenomena isn't replicated in healthy controls, sedentary (inactive) controls, or even in controls with other chronic illness. So post-exertional fatigue appears unique to ME/CFS, and something which is possibly important in defining the illness.
Outbreaks of ME/CFS are well documented globally. The most famous in New Zealand was known as "Tapanui Flu" in the 1980s.
Whilst ME/CFS outbreaks are not the most common presentation of this illness, they do suggest an infectious origin to the disease.
The aetiology (cause) of ME/CFS doesn't match that of a psychological illness.
The vast majority of cases are triggered by an immune event (e.g. viral infection, chemical poisoning) and certain genetics predispose sufferers to ME/CFS.