WOW! There is national and international media coverage on the Institute of Medicine’s report findings and suggestions on renaming Chronic Fatigue Syndrome to Systemic Exertion Intolerance Disease. Personally I can’t tell you how happy I am to have the national (and international press) giving time to this topic within the medical community. With a now estimated 2.5 million Americans suffering form this, it is no longer something we can ignore.
We have lots of info here on our site about CFS / CFIDS that you can find here
I’ve scoured the internet today to compile some trusted publications announcement of this major news. Unfortunately all of them site the same report, physicians and findings so there isn’t too many varying reports on this as of yet.
Here is the video that aired last night on NBC Nightly News that has shaken up the Chronic Fatigue Syndrome and Chronic Illness communities
While this new study is a validating release for CFS / ME and CFIDS patients nation-wide, it lacks the sense of urgency and severity of the disease. Showing a woman getting her kids ready for school before going to work hardly describes the physical, emotional & financial battles that plague patients and caregivers that have struggled to survive this chronic disease, now known as SEID.
Lack of diagnostic testing for this clinically diagnosed disease is a major roadblock in establishing a standard of treatment, management, cure of chronic care.
A quote an article on American AlJazeera does sum up the lack of diagnosis information available to physicians treating this disease as well as the people suffering from it“It sort of strikes at the Achilles’ heel of modern medicine, which relies on bloodwork and so-called objective tests,” said Dan Troph.
CBS also collected a great quote describing the severity of this disease and how it is not clearly displayed to the public because of the name of Chronic Fatigue Syndrome “In its most severe form, this disease can consume the lives of those whom it afflicts,” the IOM panel said in a news release. “It is ‘real.’ It is not appropriate to dismiss these patients by saying, ‘I am chronically fatigued, too.’ ” More on this great article and facts about SEID can be found on CBS’ website here
A video that many SEID patients (formerly referred to as CFS / ME / CFIDS) can relate to was published today on Washington Post. Probably my personal favorite of the listed articles. This video may be helpful to validate to friends, family members, co-workers, etc.
The New York Time Blog furthers the evidence of this real and validated disease (Systemic Exertion Intolerance Disease) and discusses the connection between brain abnormalities and nervous system inflammation found in a recent study released late 2014.
Additional articles on this recent name change can be found below:
The full IOM (Institute Of Medicine) report is available for download HERE
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