114 Quotes About Chronic-fatigue-syndrome

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.

Myalgic Encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling condition characterized by severe unexplained fatigue and a mixed profile of symptoms such as sore throat, painful/swollen lymph nodes, muscle pain, joint pain, headaches, unrefreshing sleep, post-exertional malaise and cognitive difficulties (K. Fukuda et al., 1994).

I’m in a caregiver's relationship with my body, a perpetual internal gauging of wellness. My spine is Hogarth’s thermometer. I ascend and descend its rungs a hundred times a day, reading the mercury level. The same dis-ease speaks many languages. If you block one mouth, another will speak. The symptoms represent differently, and as I get older, my translation changes. The prescription changes. Must be vigilant. Must be my best nurse.

Please don't look at our scarlet A's and write us off. Look us in the eye, talk directly to us. Don't panic or take it personally if we make mistakes, because we will. We will repeat ourselves, we will misplace things, and we will get lost. We will forget your name and what you said two minutes ago. We will also try our hardest to compensate for and overcome our cognitive losses.

For the last 48 years, myalgic encephalomyelitis (ME) has been formally classified by the World Health Organisation as a neurological disorder but for the last 29 years a group of UK psychiatrists (known as the Wessely School) have denied it exists other than as an aberrant belief; they insist that it is a mental (behavioural) disorder that can be cured by graded exercise and “cognitive re-structuring”.

The finding that ME and CFS group had more functional limitations and more serious symptoms than those with MS [multiple sclerosis] provides additional evidence to the seriousness of ME and CFS.

The diagnostic criteria for myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) define two distinct clinical entities. Cognitive impairment and post-exertional “malaise” (a long-lasting aggravation of typical symptoms, e.g., muscle weakness and cognitive “brain fog”, after minor exertion) are obligatory for the diagnosis ME, while chronic fatigue is the only mandatory symptom for the diagnosis CFS.

From my experience of ME/CFS there was no psychological component whatsoever, besides which exercise, if anything, was making me worse not better. I was not deconditioned or frightened to exercise. The symptoms were more consistent with a brain tumour or multiple sclerosis. The reality is ME/CFS is a serious, heritable, neurological condition and I was shocked to discover subsequently that my grandmother had died from it aged 42.

I hope you are not saying that (ME)CFS patients are not as ill as HIV patients. I split my clinical time between the two illnesses, and I can tell you that if I had to choose between the two illnesses (in 2009) I would rather have HIV.