THE QUIET EPIDEMIC
by Elena Greco
Typical reading time: 3 minutes
March 15, 2016
Many people have not heard of Chronic Fatigue Syndrome (CFS)—an unfortunate misnomer, since the disease is not about being “fatigued.” It is known by several other names, including Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS), Myalgic Encephalomyelitis (ME), and Systemic Exertion Intolerance Disease (SEID). It affects all systems in the body. According to the CDC, “This illness strikes more people in the United States than multiple sclerosis, lupus, and many forms of cancer.” It is an increasing epidemic in our country and the rest of the world; more than a million people in the US have been diagnosed with CFS, and since it takes most sufferers about five years to be diagnosed, there are likely at least several million, which means that this affects several times as many people as AIDS in this country. And like AIDS, CFS occurs throughout the world.
It has a myriad of symptoms, the greatest of which is an intolerance to exertion. If a sufferer goes beyond their “energy envelope,” the result is a crash which lands them in bed for a lengthy period. Other symptoms are cognitive issues (referred to as “brain fog”; some physicians believe this is caused by inflammation in the brain), memory problems, fainting, chills, recurrent or chronic fevers, chronic sore throat, joint pain, flu-like symptoms, muscle weakness, headaches, inflammation, and more. Some sufferers are completely bedridden and require home care for years, while others are able to function to some extent, but at a much lower level of production than before the disease struck. Many say that it is like having a terrible, permanent case of the flu.
To date there are no real answers as to cause, although many believe it is an autoimmune disorder. There are no definitive tests for making a diagnosis. CFS has been known to the CDC since at least the 1950s, but that agency and our government ignored it and suppressed information about it—whether for financial reasons or a desire to keep the cause hidden due to culpability is unknown. It is unfortunate that records were deliberately not kept or collated into a database in the many cases of the disease that have occurred since the 1950s through the 1990s. There is still no method of collecting data about this disease from physicians, who are on the front lines of this disease.
Although there are clusters of occurrence at times (possibly caused by exposure to a common immune stressor, such as a toxin or illness), there is at this time no evidence that CFS is contagious. In the 1990s, a few famous people who suffered from the disease made it public (director Blake Edwards, Julie Andrews’ husband, had it for the ten years prior to his death and appeared in a documentary about it, I REMEMBER ME), and this prompted a recognition by the CDC.
There does not seem to be a genuine effort in the US to get to the bottom of this disease or to help its sufferers. There still has been no concerted effort to create a database of sufferers and their lab results. The NIH declared that it is about to do a “study” of about 40 people—but then they promptly appointed as Director of the study a man (Brian Walitt) who had very publicly declared that he believes the disease is psychosomatic! This will clearly not be a valid study and will be a huge waste of taxpayer dollars. And recently a bad-science study came out of the UK that indicated that psychotherapy and exercise were all that were needed to “cure” the disease. It had no scientific validity, but of course it received publicity, and this was a set-back to the millions of people who suffer from CFS, who have waited for years for the public and the government to help them. There IS a mountain of evidence that exercise causes a relapse or worsening of symptoms in CFS sufferers. And “thinking differently” about their symptoms does not help them any more than it would help AIDS sufferers to think differently about their symptoms. One of the worst aspects of this disease for sufferers is the lack of understanding by others of their disease. The unfortunate name, “Chronic Fatigue Syndrome,” does not help. Although the medical profession has tried to change the name, the original one has been around for so long that we seem stuck with it.
We need research—good, scientific research—and an increase in publicity in order to get to the bottom of this disease and start to provide real help for people whose lives are devastated. We also need to get the word out that this is not a contagious disease so that there is less stigma for CFS sufferers to admit they have the disorder. There are things that work to help sufferers, but they are not being made public due to the stigma involved. CFS sufferers need to help each other. Recognition by the public is half the battle. There are still too many doctors who do not even know about this disease. Pressure on Congress to allocate funding for research is imperative. If you can, please spread the word so that people become familiar with the disease and its various names.
Here are a few references and resources:
Elena Greco is a singer, writer, producer/director and holistic counselor/coach. An opera singer and specialist in Spanish art song, she is equally at home in cabaret and musical theater. Whatever the genre, she wants the audience to be inspired and thoroughly entertained. As a writer, she maintains a personal blog and has been published in national publications, including Psychology Today and Classical Singer. She has two books coming out on Kindle soon, one about vocal accompanists and one about trauma. She writes about the creative arts, psychology, communication, persuasion, health, social issues, culture and politics. Elena is founder and producer/director of ELENA GRECO MULTIMEDIA PRODUCTIONS™ (EGMP) (www.elenagreco.com/music/egmp), a company which offers a different kind of entertainment, one which actively and uniquely engages both performers and audience, presenting projects that entertain, educate and enliven, through music, visual art, technology and other creative expressions that expand the senses. Among other creative outlets, EGMP includes CONCERTS FOR HEALING™, which focuses on issues of health and ecology, uplifting and entertaining through beautiful popular music while educating about these important issues, and OPERA REALE™, which offers simple, affordable and unusual multimedia productions of great opera with the finest local singers and musicians, focusing on expressing the composer’s music at the highest level. Elena’s specialties as a holistic counselor/coach are creativity and creative artists, trauma, and communication; she has a degree in Counseling Psychology/Human Development, as well as certifications in the healing arts. To further her intention to bring healing through music, Elena hosts THE MUSIC SALON™ monthly to provide a haven for creative artists to share their art among colleagues and receive support in their creative process. Reach her at firstname.lastname@example.org or find her on the web at www.elenagreco.com. You can also read future articles by Liking her Facebook Writer page (https://www.facebook.com/Elena-Greco-Writer-1504107506563538).