Chronic Fatigue Syndrome (SEID)

March 17th, 2015

March is Chronic Fatigue Syndrome Awareness Month! With the month comes some good news, and a new name for a disorder that is thought to affect more than two and a half million Americans, mostly women - Systemic Exertion Intolerance Disease (SEID).

Characterized by intense fatigue, body aches, persistent flu-like symptoms, persistent light-headedness, and cognitive impairment – such as "tip of the tongue" forgetfulness or an inability to remember how to perform a basic task – the disorder has frustrated patients and baffled physicians searching for both causes and effective treatments. Many patients report physicians who tell them that their symptoms are not real, that they are imagining the pain and fatigue, and that they should simply get more exercise. (Everyone who has experienced a physician like that, raise your hand. Now go find a new one, you deserve better!)

Researchers recently discovered that those afflicted with Systemic Exertion Intolerance Disease – the name they suggest be given to CFS – suffer distinct and multiple disruptions in their immune systems as the disease develops. Previously handwaved away as "all in your head" by many physicians, SEID has now been exhaustively documented as an organic disease – that is, one that has developed in the body - rather than a mental condition. The discovery of the disruptions in the patients' immune systems is expected to lead to testing that will allow for earlier and easier diagnosis of the disorder. These disruptions are caused when the body's immune system goes haywire after fighting off a disease or a persistent infection – many people with SEID report developing their symptoms after recovering from diseases like mononucleosis or pneumonia, other upper respiratory infections, or from post-surgical infections. Rather than shutting down for a period of time after fighting off disease, the immune system continues to produce the chemical messengers that tell the body it is still sick.

Current research shows that those suffering from SEID are more “functionally impaired” than those with disorders such as Multiple Sclerosis, Rheumatoid Arthritis, and Diabetes, and are more likely to find themselves housebound or bed-ridden for extended periods. The rate of unemployment among sufferers is around 35% to 60%, as the disease increasingly interferes with the ability to tolerate physical activity.

The recent breakthroughs in research are expected to lead to better, more tailored treatment options for those who have been formally diagnosed, and a more streamlined approach to diagnosis. The discovery of the persistent immune system activity may lead to blood testing to determine presence of the disease, as well as the stage of the disease.

If you have been "mysteriously ill" for a while, and feel like you've been run over by a truck more days than not, you'd do well to sit down with your physician and talk about SEID. It's not all in your head, and early diagnosis and treatment means a better quality of life, even while managing a chronic illness.

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