99 Quotes About Myalgic-encephalomyelitis

Sophia’s case sheds light on CFS because there were changes in her dorsal ganglia – the gatekeepers to sensation in the brain – and we know that fatigue depends on sensory perception.

A heated and often bitter debate persists over whether chronic fatigue syndrome (or myalgic encephalomyelitis (or the postviral fatigue syndrome) is physical or psychological. Although many doctors avoid controversy by stating the obvious—namely, that the mind-body split is artificial and all diseases have physical and mental components—what is really at issue is whether this illness is real or imaginary.

Pacing is much easier if you try to live life, but within your limitations. Luckily, pacing often makes it possible to have a life despite ME. It might be a small life, but it will still be your own.

Pacing consists of listening to your body, and seeing symptoms as signs, usually of overactivity. You use information from your body to reorganise your activities to get as low a symptom level as possible. This usually means splitting activities into smaller bits and taking frequent rest breaks. It also means finding less strenuous ways of performing activities. When less energy is spent on some activities, you’ll have more energy left over to have fun.

Eighteen months ago, after seeing thirteen different doctors and undergoing multiple tests and investigations, not only was I given a diagnosis of a condition that I didn’t know about or understand, it was an illness I didn’t believe in.

The biochemistry and needs of each patient is unique. Chronically ill patients require nutritional support for healing.

Studies also show that doctors may view ME/CFS patients as hostile or combative when they challenge the incumbent biopsychosocial model of ME or CFS. Yet rather than feeling threatened or worse still, viewing the patient as uncooperative, there is an opportunity to discuss the limitations of medical knowledge. Here, we believe there is an ethical duty for candour and honesty: indeed, where there are clear gaps in medical knowledge the patient voice should have even more standing.

When it comes to hierarchies of illness, evidence shows that chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME), features at the bottommost end of the medical “favoured” list. In the 1980s, newspapers helped coin the dismissive label “yuppie flu”; today, ME/CFS sufferers are still being referred to psychotherapists to work on their “faulty” illness beliefs.

Because doctors can’t name the illness, everyone—the patient's family, friends, health insurance, and in many cases the patient—comes to think of the patient as not really sick and not really suffering. What the patient comes to require in these circumstances, in the absence of help, are facts—tests and studies that show that they might “in fact” have something.