MYALGIC ENCEPHALOMYELITIS /
CHRONIC FATIGUE SYNDROME
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome – in short: ME/CFS.
That illness changed my life in a way I would never have expected or even considered.
‘ILLNESS CHANGED MY LIFE’
Everyone has heard or read that one particular sentence ‘illness changed my life’ in a documentary on TV or a book or article, right? Everyone has heard of someone who went through a life-transforming process due to illness, hasn’t he? But no one – including myself – ever expects that this could actually happen to oneself.
IT CAN HAPPEN TO EVERYONE
Guess what: it can happen to everyone.
I NEVER EVER even considered such a thing to happen to me and my life. But here I am – looking back on MY life-transforming sick-years, writing down MY story. C R A Z Y !
PLEASE, PLEASE, PLEASE READ THE INFORMATION BELOW!
Anyhow, please invest five minutes of your precious lifetime in reading the following information about ME/CFS. It’s important because ME/CFS is not well-known, neither by society nor by medical professionals, which leads to a lot of misunderstandings as well as stigmatization of patients. Thank you.
WHAT IS ME/CFS?
… a devastating multi-system disease …
… substantial loss of physical or cognitive functioning …
… is like living with late-stage cancer, advanced stage AIDS, or congestive heart failure for decades …
Myalgic Encephalomyelitis (ME), commonly known as Chronic Fatigue Syndrome (CFS) or ME/CFS, is a devastating multi-system disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems.
It often follows an infection and leaves 75% of those affected unable to work and 25% homebound are bedridden. An estimated 15-30 million people worldwide have ME.
Myalgic Encephalomyelitis (ME) is a systemic neuroimmune condition characterized by post-exertional malaise (a reduction in functioning and a severe worsening of symptoms after even minimal exertion). It causes dysregulation of the immune, nervous, and energy metabolism systems. The effects of ME are devastating enough to leave 25% of patients housebound or bedbound.
All people with ME experience a substantial loss of physical or cognitive functioning, but there is a spectrum of severity.
The typical ME patient scores more poorly on the quality of life surveys than those with multiple sclerosis, stroke, diabetes, renal failure, lung disease, heart failure, and various cancers. Onset can be either sudden or gradual, and the intensity or frequency of specific symptoms can wax and wane. While symptoms can fluctuate significantly from day-to-day, shifts in overall wellness should be measured in years, not weeks or months.
The debilitating and often disabling symptoms of ME include unrelenting exhaustion, sensory sensitivity, cognitive impairments, and muscle and joint pain. An exacerbation of all symptoms can follow even trivial amounts of physical or cognitive exertion.
ME leaves 25% of patients housebound or bedbound. For moderate to severe patients, living with ME is like living with late-stage cancer, advanced stage AIDS, or congestive heart failure for decades.
Other common symptoms include:
Pain in the muscles and joints
Headaches of a new type, pattern, or severity
Cognitive symptoms such as confusion, difficulty retrieving words, poor working memory, spatial instability, and disorientation
Sensitivity to light, sound or vibration, taste, odor or touch
Gastrointestinal symptoms such as nausea or abdominal pain
Muscle fatigability, weakness and fasciculation; poor coordination and ataxia
Autonomic and endocrine symptoms such as poor temperature regulation, cold or heat intolerance
Immune symptoms such as tender lymph nodes, recurrent sore throats, fevers, or flu-like symptoms, and new food or chemical sensitivities
The cause of the disease is unknown, although in many cases ME is preceded by a viral illness from which the patient never recovers. Research suggests the illness is the result of an abnormal immune response to a triggering event.
There are no FDA-approved treatments, although some medications may be able to help symptoms. Experimental therapies have helped some patients, including antivirals and immunomodulatory drugs.
ME affects between 15-30 millions people worldwide, and at least 1 million Americans.
“It is health that is real wealth and not pieces of gold and silver.”
// Mahatma Gandhi