Posted by Heidi/Mermie Imagine that story, the story of your life, not being believed time and time again despite there being an enormous amount of irrefutable evidence that backs up exactly what you are saying. This is the position more than a million adults, teenagers and children find themselves in because they are unlucky enough, through no fault of their own, not just to be ill but to be ill with a publicly misunderstood illness. One with a stigma attached to it that causes almost as much pain and suffering as the illness itself. I'd like to attempt to tell at least some of their real story, the story based in fact rather than fiction. It's a complicated tale but one that needs telling and needs desperately to become public knowledge . I'm begging you, just for the few minutes it will take to read this, to let go of what you already 'know' about this illness. First of all, the illness I'm talking about is called ME: Myalgic Encephalomyelitis or CFS: Chronic Fatigue Syndrome. I'll refer to it hereafter as ME/ICD-CFS (Okay, now you know the name remember what I said about forgetting the rumours you've heard because they ARE rumours). I have been unlucky enough to have had this illness for the past 10 years. I'm 100% housebound and 99.5% bedbound and yet I have had to fight so hard just to try to get even basic help and understanding from doctors, friends and family members. So little is known by the public about this illness. Few people are aware that ME/ICD-CFS not only affects people individually, but that there have been documented outbreaks of the illness. Most people also have no idea of its brutal severity, (there have been deaths) not to mention its wide array of disabling symptoms that have nothing to do with 'fatigue'. It's hard to describe exactly how debilitating ME/ICD-CFS is, but some have tried: Dr Dan Peterson, one of the doctors who delineated a tragic [ME/ICD-CFS] cluster outbreak in Incline Village, Nevada (often considered the epicentre of the disease), employed a protocol called the Medical Outcome Study to systematically evaluate the level of suffering in a group of [ME/ICD-CFS] patients. He and his colleagues measured people with [ME/ICD-CFS] against a control group and against patients with various ailments. When he presented his findings, Peterson revealed the astonishing fact that no other set of patients had measured so poorly. [ME/ICD-CFS] patients experienced greater "functional severity" than the studied patients with heart disease, virtually all types of cancer, and all other chronic illnesses. An unrelated study compared the quality of life of people with various illnesses, including patients undergoing chemotherapy or haemodialysis, as well as those with HIV, liver transplants, coronary artery disease, and other ailments, and again found that [ME/ICD-CFS] patients scored the lowest. "In other words", said Dr Leonard Jason in a radio interview, "this disease, this syndrome, is actually more debilitating than just about any other medical problem in the world." Nevertheless, most accounts of the illness have simply shortened its name to the flip and damaging misnomer "chronic fatigue" as if [ME/ICD-CFS] is a mild inconvenience. (Munson, P. p. 4) So what is ME/ICD-CFS? Myalgic encephalomyelitis is a systemic acutely acquired illness initiated by a virus infection which is characterised by damage to the brain stem; a nerve centre through which many spinal nerve tracts connect with higher centres in the brain in order to control all vital bodily functions. ME/ICD-CFS is a loss of the ability of the CNS (the brain) to adequately receive, interpret, store and recover information which enables it to control vital body functions. It is a loss of normal internal homeostasis. The individual can no longer function systemically within normal limits. This dysfunction also results in the inability of the CNS to consistently programme and achieve normal smooth end organ response. There is also multi-system involvement of cardiac and skeletal muscle, liver, lymphoid and endocrine organs. Some individuals also have damage to skeletal and heart muscle. This is not simply theory, but is based upon an enormous body of clinical information. It is worth noting that of the CNS dysfunctions, cognitive dysfunction is one of the most disabling characteristics of ME/ICD-CFS. In short, ME/ICD-CFS symptoms are primarily caused by central nervous system dysfunction and a subsequent breakdown in bodily homoeostasis. Therefore although ME/ICD-CFS is primarily neurological, symptoms may be manifested by cardiac, cardiovascular, immunological, endocrinological, respiratory, hormonal, gastrointestinal and musculo-skeletal dysfunctions and damage.
on 8/27/2007, 4:18 am
Imagine if your entire well-being depended on the telling of a story." (Munson, P. p. xxiii)
Imagine having to tell that story not just once but over and over again, all the while experiencing unspeakable pain, symptoms of illness, and mental confusion so profound that you struggle to remember how to speak at all.
Message Thread:
« Back to thread