CFS/ME/SEID

Chronic Fatigue Syndrome (CFS), aka Myalgic Encephalomyelitis (ME) has now been renamed to be Systemic Exertion Intolerance Disease (SEID)

One of my myriad of illness is and has been Chronic Fatigue Syndrome (CFS), now known as Systemic Exertion Intolerance Disease, or SEID. There's a good description below, so I won't repeat that. One of the things that is a suspected cause of or contributor to SEID is the Epstein-Barr Virus, which I most definitely have. I also have cytomegalovirus, 

Solve ME/CFS Initiative


Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness

"Myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) are serious, debilitating conditions that impose a burden of illness on millions of people in the United States and around the world. Somewhere between 836,000 and 2.5 million Americans are estimated to have these disorders (). The cause of ME/CFS remains unknown, although in many cases, symptoms may have been triggered by an infection or other prodromal event, such as “immunization, anesthetics, physical trauma, exposure to environmental pollutants, chemicals and heavy metals, and rarely blood transfusions” (, p. 1). Over a period of decades, clinicians and researchers developed separate case definitions and diagnostic criteria for ME and CFS, although the terms denote conditions with similar symptoms. The literature analysis conducted in support of this study took into consideration the variability in the definitions used in the studies reviewed. For the purposes of this report, the umbrella term “ME/CFS” is used to refer to both conditions.
Diagnosing ME/CFS in the clinical setting remains a challenge. Patients often struggle with their illness for years before receiving a diagnosis, and an estimated 84 to 91 percent of patients affected by ME/CFS are not yet diagnosed (). In multiple surveys, 67 to 77 percent of patients have reported that it took longer than 1 year to get a diagnosis, and about 29 percent have reported that it took longer than 5 years (). Seeking and receiving a diagnosis can be a frustrating process for several reasons, including skepticism of health care providers about the serious nature of ME/CFS and the misconception that it is a psychogenic illness or even a figment of the patient's imagination. Less than one-third of medical schools include ME/CFS-specific information in the curriculum (), and only 40 percent of medical textbooks include information on the disorder (). ME/CFS often is seen as a diagnosis of exclusion, which also can lead to delays in diagnosis or to misdiagnosis of a psychological problem (). Once diagnosed, patients frequently complain that their health care providers do not know how to deliver appropriate care for their condition, and often subject them to treatment strategies that exacerbate their symptoms.
ME/CFS can cause significant impairment and disability that have negative economic consequences at both the individual and the societal level. At least one-quarter of ME/CFS patients are house- or bedbound at some point in their lives (). The direct and indirect economic costs of ME/CFS to society have been estimated at $17 to $24 billion annually (), $9.1 billion of which has been attributed to lost household and labor force productivity (). High medical costs combined with reduced earning capacity often have devastating effects on patients' financial status.
Literature on mortality associated with ME/CFS is sparse. One study found that cancer, heart disease, and suicide are the most common causes of death among those diagnosed with ME/CFS, and people with ME/CFS die from these causes at younger ages than others in the general population. However, the authors note that these results cannot be generalized to the overall population of ME/CFS patients because of the methodological limitations of the study ()."

Wikipedia on SEID

No comments:

Post a Comment

Thank you so much for commenting, it is always a pleasure to hear from anyone who is reading. Note that all comments are moderated, so when you post your comment, it will show up once its been reviewed. Thank you for your patience and your time. You are beautiful!