99 Quotes About Myalgic-encephalomyelitis

The crucial differentiation between ME and other forms of postviral fatigue syndrome lies in the striking variability of the symptoms not only in the course of a day but often within the hour. This variability of the intensity of the symptoms is not found in post viral fatigue states.

people with ME/CFS do not have “fatigue as their main symptom”; they have post-extertional fatigability accompanied by malaise as their main symptom (their voluntary muscles do not work properly and are exquisitely painful after exercise)

the disabling fatigue experienced by individuals with ME/CFS differs from that associated with other illnesses or everyday activity

individuals with ME/CFS experience different types of fatigue than what are reported in the general populations

It’s absolutely retrogressive to suggest [ME] CFS is in the heads of patients. I have seen patients commit suicide, or have been otherwise destroyed, because some professor has diagnosed them as having a psychiatric illness.

It [ME] is one of the most disabling diseases that I care for, far exceeding HIV disease except for the terminal stages.

The most important limitation of [clinical] guidelines is that the recommendations may be wrong... Practices that are sub-optimal from the patient’s perspective may be recommended to help control costs, serve societal needs, or protect special interests (those of doctors…or politicians, for example).

You get ill, you are accused of being mentally ill, denied effective treatment, then when you campaign for ‘real science’, you are accused of terrorising those who do not believe in your illness...after all, if your message is that people who say they are suffering from ME or CFS are mentally ill, then accusing them of irrational attacks adds strength to your case.

Malaise” is a general body discomfort or weakness, often marking the onset of an of infection/flu-like illness or other disease. Fatigue and flu-like symptoms are linked to activation of the immune system and research scientists are in the process of unraveling these mechanisms in ME/CFS.