MYALGIC ENCEPHALOMYELITIS (ME)
CHRONIC FATIGUE IMMUNE DEFICIENCY SYNDROME (CFIDS)
CHRONIC FATIGUE SYNDROME (CFS)
ME/CFIDS/CFS is an inflammation of the brain, perhaps caused by a virus. It is an autoimmune disorder in which physical, mental or emotional stress cause neuroimmune exhaustion. The fatigue is not the result of physical exertion and is not relieved by sleep.
“Postexertional neuroimmune exhaustion” means you have experienced unexplained and disabling fatigue after simple activities. There is a delay of hours to days between the effort and the exhaustion; specific exhaustion can last hours to weeks. The disorder can last from months to many years.
Random physical activity and physical or emotional stress make it worse. Repeated activity leads to failure in strength or stamina. Impairment can vary from fairly modest to so severe that patients may be bed-bound and need total nursing care.
The exact cause is unknown; there is no known cure. There is no consistent treatment: Some patients benefit from some treatments some of the time. Alternative or complementary treatments are more promising than typical medications.
There are really no other conditions that look exactly like CFIDS in all its aspects. The impact is dramatic and devastating.
Problems with energy production or energy transportation within the body:
Severe, disabling fatigue* Insomnia Sleep disturbance*
Headache Sore throat Nausea Tender lymph glands*
Dizziness* Fever* Muscle pain Stabbing pain in arms and legs
Joint pain without swelling or redness Palpitations* Food sensitivities*
Frequent urination* Lightheadedness Difficulty breathing*
Difficulty regulating body temperature* Problems focusing vision*
Sensitivity to light or noise* Problems with depth perception
Mood disturbance * Depression/Anger*
Confusion* Impaired concentration* Impaired short-term memory*
Impaired intellectual performance* Inability to process information*
Some medications make it worse: benzodiazepines,* beta-blockers, sedatives, antidepressants,* antibiotics.*
It’s quite possible to have CFS/ME and not have all of these symptoms—an individual’s experience of CFS/ME is essentially unique. An unhelpful line of thinking among ‘dinosaur doctors’ is to say to a fatigued patient, on receipt of a normal set of blood reports, that there is ‘nothing wrong’.
“Patients get up for a few hours and look pretty decent and then go back to bed for a couple of weeks.”
“It’s beyond tiredness. It’s in every cell of my body. Even sitting in a wheelchair is taxing for me”
*Symptoms I experience.
Compiled from multiple professional documents and the experiences of several patients.