What do Autism, Bi-polar Affective Disorder, and
Gulf War Syndrome have in common? When scientists and medical
researchers lack knowledge about a disease or cause of a disease, they
sometimes reach out for psychological "causes". Thus,
autism was blamed on "Ice Box Parents" (intellectually bright
but emotionally cold mothers and fathers), bi-polar affective disorder was
blamed on mixed messages in childhood, and gulf war syndrome has been
blamed on a myriad of causes.
Gulf War Syndrome has now also been linked to one of the most silent, invisible and costly chronic conditions in the world, fibromyalgia syndrome – a condition which has no known cause and no known cure, and which affects primarily women. Although it has been called by many different names over countless generations, dedicated researchers have discovered definitive criteria to diagnose the condition. Those with chronic fatigue syndrome, multiple chemical sensitivities syndrome, myofascial pain syndrome and gulf war syndrome, which have considerable overlap in symptoms with fibromyalgia syndrome, have not been as lucky, since a diagnostic marker has not yet been identified. The symptoms of these chronic conditions can range from moderate to severe. Among the most common are pain, aching, fatigue, and sleep dysfunction. The additional symptoms are too numerous to include in this piece, but it is clear in the eyes of the researchers that there are biochemical abnormalities in people with these syndromes, who "look fine" to others. There is significant evidence that there is a genetic pre-disposition to these conditions, which may manifest differently in each individual. For example, a person with fibromyalgia syndrome may have a child with attention deficit (hyperactivity) disorder and yet another child with chronic fatigue syndrome. Many people with one of these syndromes have spoken of the potential relationship with autism and schizophrenia in their offspring.
What type of doctor you see, and how familiar that doctor is with these chronic conditions, determines whether you get a) a name for your condition (and which name), b) referred to a psychiatrist, or c) shown the door and labeled as a hypochondriac.
In a study by Hudson and Pope published in the Journal of Rheumatology, these researchers used the term Affective Spectrum Disorder to cover several conditions, including fibromyalgia syndrome, irritable bowel syndrome, major depression, panic disorder, bulimia, obsessive-compulsive disorder, cataplexy, attention deficit (hyperactivity) disorder, and bi-polar affective disorder.
In a paper published by Muhammad B. Yunus, M.D., in Bailliere’s Clinical Rheumatology, Dr. Yunus prefers the term Dysregulation Spectrum Syndrome to incorporate fibromyalgia syndrome, irritable bowel syndrome, chronic fatigue syndrome, migraine and tension headaches, primary dysmenorrhea, periodic limb movement disorder, restless leg syndrome, temporomandibular joint dysfunction and regional fibromyalgia/myofascial pain syndrome. He feels that these have a similar origin in the central nervous system.
Dr. Yunus further states, "Many physicians believe, from the early years of their training, that a ‘true’ disease is based on pathological changes in the tissues...Any disease, condition or syndrome which fails to show these findings has been considered to represent a psychological entity or malingering...Such a misunderstanding has lead to an attitude by many physicians that fibromyalgia syndrome (FMS) exists ‘all in the mind’ of the patients, with no biophysiological basis." Enter the second victimization.
Individuals with these chronic conditions, through no fault of their own, are forced to dramatically alter their lifestyle in terms of family, occupation, financial status and everyday activities. Because of the lack of recognition of these syndromes, they face skepticism from every direction – their health-care providers, their employers, their family, their friends. And when the condition becomes so debilitating that they cannot function in the ‘normal’ world, they face further cynicism from the organizations designed to assist them in time of need – the Social Security Administration, long-term disability providers, health-care plans.
In Dr. Yunus’s paper, he makes a profoundly
accurate statement. "Taken as a group, DSS is probably the most
common chronic condition that afflicts human beings, causing much
suffering. Serious research efforts should be directed to this
important group of disorders." In 1997, research funding by The
National Institutes of Health allocated $9 per person for rheumatoid
arthritis and just $ .64 per person for fibromyalgia syndrome, even though
the prevalence of fibromyalgia syndrome is higher than that of rheumatoid
arthritis. It is time to recognize the enormous impact these chronic
syndromes have on our society, not the least of which is financial.
It is also time to educate people so that they not suffer needlessly.