Chronic Fatigue Syndrome: Doctors Are Finally Giving Credit to This Debilitating Condition

It is little known that the author of Sea Biscuit wrote the true account of the brave horse that could, all while she was laying down for three years. She suffered from something that made her unable to get around most days of her young life. More than one million Americans are afflicted with the devastating, and weakening, condition known as Chronic Fatigue Syndrome or Chronic Immune Dysfunction Disorder (CFIDS). It is estimated by the CFIDS.org, that up to 90% of people who actually have the illness have not been properly diagnosed with it, and are consequently, not getting proper treatment. The symptoms of CFIDS include daily fatigue that can only be described as "extreme exhaustion". It is not helped by rest or sleep and is exacerbated even by mild exercise. All other known causes of the extreme fatigue must also be first eliminated. Patients having this disorder are often ill with it for more than 6 months before they can receive the proper diagnosis.

In the mid-eighties, my aunt was served the title of being a victim of Chronic Fatigue Syndrome. I remember hearing about it as a young teenager and wondering how awful it might feel to be excessively tired all day long. When we first received the news, my mother wrote down the title and passed it around to several health professionals at her work, where she was a medical records coder. The first few people who read the name did not know what it was. Even less took it seriously. It took several people, and a prime time news program, before my mother learned that it was also known as "The Yuppie Flu". My aunt's disease was not being taken very serious by the media, and thus, the general population, or, most disturbingly, by those trained to heal her.

My aunt has since recovered from this particular health disorder. Although, slowly. She takes care of herself properly. Something most Americans have little experience in doing. Her work as a career nurse also helps in giving her control in her understanding of what is happening to her. But many other millions of Americans do not have the same kind of success with this particular illness that my aunt has. Many of them simply give into the depression of it all, as historically, victims of CFIDS do not have the attention from the medical establishment to help them sort out the issues for them.

Before I received my diagnosis of chronic iron deficiency anemia, I wondered aloud to my neurologist if I had CFIDS.

"Let's not go chasing our tails now," she warned. I had the sneaking suspicion she did not believe me. But then, "That is a very serious disease," came out of her mouth. "You do not want to resign yourself to that one."

Anemia is better? I wondered. Doctors are actually taking this seriously now? Finally?

For years, in fact, I had wondered about the possibility of me actually suffering from this disorder. As I visited various doctor's offices - to see the OB/GYN, the dentist for one of my many chocolate-induced cavities, or even to one of my children's pediatricians, I began to run into people who were chronically so tired they had trouble even lifting their heads off the pillow in the morning. And these people were not depressed. They did not have Lupus or MS. They were not drug abusers or alcoholics or hypochondriacs. They were simply and suddenly just too darn tired to even hold a pencil or carry a bag of groceries. Many of them also had intermittent, extreme pain throughout their bodies when they pushed themselves too far. Something called Fibromyalgia. People mostly with the aforementioned pain condition were not being taken seriously either after too long. That, too, has begun to change - slower than it should have.

My fatigue is often the same as a person's with CFIDS. Although, mine shows up easily in a blood test. There is no definitive clinical test for CFIDS, but it kills like many other diseases. It kills the life that one once had, but for many years, it has not been taken seriously by doctors and nurses the way a person with mild MS, who does not have to quit their job or cancel too many social engagements, is. It is a crime, really, and before my anemia diagnosis, when I was wondering painfully if I had this disorder, I began to feel real anger for those who had suffered ,without much compassion, from those who had been trained to help them.

I began to do some Internet research. Sure enough. Medicine has begun to play catch-up. Although, only because of the hard work of those who have suffered from a life of daily fatigue. Only because of their constant voice making waves louder and higher than all the other diseases that are treated with the respect those with CFIDS should have always known.

The National Institute of Health did not even acknowledge this as a real problem until about 10 years ago. Now they report that it can be as equally devastating to the order of life as Rheumatoid Arthritis and other autoimmune diseases. It is even believed now that many people with Chronic Fatigue can be clearly pinpointed out of a group of people with other diseases. It is now acknowledged that it is 4 times as likely to appear in the general population than HIV, and much more common amongst women than men. This is not known if it is a real reflection of the rate of disease and gender, or it is more a reflection of the greater likelihood of women to go to the doctor when something goes awry with their physical health than men.

Chronic Fatigue can be easily Googled now. Answers can be had from Medicine.net to WebMD and the Mayo Clinic's own website. There are teaching hospitals with whole clinics dedicated to curing and discovering more about the disease that is causing so many Americans to feel completely run down day in and day out even when much effort is being made, by the victim, to quell the side effect of CFIDS. Often, the patient will be noted as suffering from lifelong allergies. They have frequent and unexplained vertigo. A patient will enter a doctor's office and complain of vague, but very real, widespread pain that is not treated by usual over the counter medications. Often they have also suffered, at some point in their life - as most Americans have - from the Epstein-Barr virus. But those with CFIDS do not come down with it as children, like most of us. They come down with it as adults, and somehow, never seem to fully recover. The disorder can be completely devastating and interfere with every aspect of a person's life, and it often strikes them in their prime - between the ages of 40 and 50 years old. Just when most are thinking about retirement or getting an advanced degree. Much of life gets completely sidelined by Chronic Fatigue when it attacks.

I have interviewed doctors, psychologists, writers, plumbers, lawyers, stay-at-home-mothers, and film makers with this disease. Many of them have reported sudden divorces after years of solid marriage, unemployment and unwanted career change, because what they love, had to be set aside for a daily nap that never nourished. When I hear that someone has Chronic Fatigue now, I look at them as I do as cancer patient - with much respect for their pain and loss. One medical transcriptionist I knew said her battle was like wearing "one of those protective x-ray vests all day long, every day of the year and feeling it get heavier as the day wore on".

In December of 2007, I was working, almost daily, on a collection of essays on the subject by a victim and lifelong psychologist with a once thriving career and patient load. She warned me to hurry and write my work about her very real disease, because she believed it would soon kill her. I took a week off for a brief Christmas vacation, and I never heard from her again. It took all she had to just to answer my phone calls or even send an email. Our communication was scant, but rich when we were able to attain any. I know CFIDS is not, technically, supposed to kill its victims, but I have known so many who feel that they are so much closer to, at least, the sense of death than others with ailments that have long been considered more instantly devistating. How heavy is the burden of Chronic Fatigue, and how good that every doctor I have come across in the past recent years have said,

"That is a very serious disorder. Be grateful you do not have it. It's survivable, but it's often a long haul."

At least they are starting to pay attention now. The excellence of American medicine is searching actively for a cure. This is a good thing for those who can, sometimes, not even literally speak for themselves. It is a sad state of affairs that it has taken this long though. God help those who suffer with it daily, because the road to recover still belongs, almost solely, to them.