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Old 08-02-2015, 11:05 PM
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DejaVu DejaVu is offline
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DejaVu DejaVu is offline
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Join Date: Apr 2008
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Talking IOM Report and Work Outstanding

Quote:
Originally Posted by Lara View Post
Looks as if it's getting a new name and a new definition.
http://www.medscape.com/viewarticle/839532#vp_2
Medscape Medical News
IOM Gives Chronic Fatigue Syndrome a New Name and Definition

http://www.iom.edu/Reports/2015/ME-CFS.aspx
Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness
Hi Lara,

Thanks for posting this information.

The IOM report (video) was inspiring. I saw it live. The IOM has gone as far as to tell the CFS community/advocates to "Act up!" The IOM had said they gave enough information to back up a major advocacy blitz and encouraged advocates to "Act Up!" based upon the information the IOM has put together.
I have never heard such a prestigious committee encourage anyone to "Act Up" before.

The new name for CFS in the U.S. is Systemic Exertion Intolerance Disorder (SEID). The "exertion intolerance" includes both physical and cognitive exertion.

The IOM made many "handouts" available for viewing and/or download.

The IOM has stated anyone with a medical license is now able to properly diagnose SEID, as the diagnostic algorithm and professional information is available to everyone, on the IOM page you have cited. No CFS specialist needed to diagnose CFS/SEID.

The IOM has also set goals, with timelines, in hopes of continuing to move these efforts forward.

The IOM was very apologetic to the CFS community re: the many delays in funding and in then medical profession taking CFS seriously. The IOM states there are no longer any excuses for any licensed medical professional to delay diagnosis, to refuse to diagnose patients, etc.

Although there is a 6 month waiting period from symptom onset to complete diagnosis, the IOM made it clear doctors should be treating patients symptomatically during the first six months, keeping them supported and as comfortable as possible, (Symptomatic treatments should not also wait for these six months to pass while making diagnosis.)

I hope people will watch the video of the IOM.
I hope people will review (and will use) the available downloads of information made readily available by the IOM.

Thanks again for posting this info., Lara!

To Our Healing,
DejaVu
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"Thanks for this!" says:
bluesfan (08-03-2015), Lara (08-02-2015)