2013-12-17 13.01.25

Posted by & filed under blog, Education, Treatments and Research.

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

NBC Nightly News Video- IOM Study Calls For New Name For Chronic Fatigue Syndrome

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.

Chronic Fatigue Syndrome Is A Real Disease And Should Not Be Dismissed

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:

Medical News Today

Journal Gazette

NPR

US News

The full IOM (Institute Of Medicine) report is available for download HERE

 

REMINDER: We are 1 of 3 national nonprofits that benefit patients struggling with SEID / CFS / CFIDS / ME. If you are interested in helping this community that now has more light shed on it, please visit our DONATE NOW page to help us increase the number of patients we can help!

 

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4 Responses to “Chronic Fatigue Syndrome Legitimate Disease Now Called SEID”

  1. Loila Hunking

    At last, a credible report that validates what has been evolving in my tortured body for years. In recent months the pace has dramatically accelerated and left me a virtual prisoner in my own home. Unfortunately several of the best doctors in 2 countries have been unable to offer diagnosis or treatment beyond “fibromyalgia” or systemic disease of the central nervous system , of unknown origin.” y

    Reply
  2. DEBI

    I AM NOT BENT, BUT BROKEN. I HAVE BEEN ILL SINCE AGE 3 AND AM NOW 61. WHAT I HAVE BEEN THROUGH OVER THESE PAST 58 YEARS HAS BEEN PURE HELL. I HAVE TRIED AND DONE EVERYTHING TO FIND OUT WHAT WAS WRONG WITH ME. SO MANY SYMPTOMS! DOZEN’S OF DOCTOR’S. IN 1994 A RHEUMATOLOGIST DIAGNOISED MY FIBROMYALGIA AND FROM THERE ONLY BY STUMBLING ONTO OTHER WEBSITES THAT COMBINED CFIDS/FMS DID I LEARN FURTHER WHAT WAS WRONG. MY STORY IS VERY LONG SO I’LL SPARE THE DETAIL’S. FACT IS I DON’T BELIEVE A NAME CHANGE; OR ALL THE REASEARCH IN THE WORLD, WILL HELP. SOME GIVE FALSE HOPE WHEN THEY SAY SOMETHING IS JUST AROUND THE CORNER, WHEN IN FACT MOST OF THE THINGS THEY ARE REFERRING TO HAVE ALREADY BEEN DONE OVER AND OVER AGAIN. I DON’T MEAN TO SHAKE ANYONE’S CONFIDENCE IN A CURE (OR EVEN A MARKER TEST) AND I AM OVERWHELMINGLY GRATEFUL THAT THERE ARE ORGANIZATION’S THAT CARE AND GIVE THOSE THE INFORMATION THEY NEED TO GET EDUCATED. I WISH I WOULD HAVE HAD THAT GROWING UP.

    Reply
    • Loretta Montgomery

      Hi Debi, I am neither bent or broken. God hand picked me to use my illnesses on all my diseases for a purpose as I’m doing certain positive things to make people aware as well as to motivate those suffering that feeling bad for oneself will never help you. Smile through the pain.. Our body is a shell. If you have suffered hell I don’t believe you’d say that nor feel pity on yourself. A positive mind is half the battle. Just taking laps around the backyard and trying to get up cook or do laundry at your own pace will give you more strength. I worked my career as a first grade teacher while suffering a ulcer filled bladder that was removed, Fibromyalgia, Kidney Disease, Chronic kidney infections, Kidney disease with legions in my right kidney, hip bursitis on both sides, pelvic arthritis, herniated discs from my neck down my back in 4 places and esophagitis. There’s more however those are the most severe. A great attitude I am able to have because instead of getting angry I claim God chose me for good. We are a faith filled family. My husband has stood by me no matter what. Friends all abandoned me and many don’t understand why I can’t do things or go out. I’m submitting a patent to The Library of Congress. No matter what any medical personnel may think they know, they don’t know anything unless they’ve suffered themselves. Focus on helping others instead of yourself and I promise w/ a new attitude will come a new life. god Bless You!

      Reply
  3. Joanna

    Iam bent and have been broken for 13 years. I am now rising up from the ashes back to bent, and learning to truly have priorities and be greatful for every little thing each day brings. I’m turning 69 and have been ill since 1986. Would love to know if there are others out there who have been ill as long as I have been. I am definetly pleased with the new name and new attention. Any attention to our cause is a good one and publicity will help to reach out to others who need to know their symptoms have a name. Power on great Warriors!!

    Reply

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