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23 February 2015 @ 01:40 am
My disability has a new name: SEID  
Something stunning happened recently in the world of CFIDS/CFS/ME. The NIH, the CDC, and the Dept of Health and Human Services (and more) had asked the Institute of Medicine to look into the evidence base of this illness. They have now come out with a smashing report. Please read this brief report on their findings and recommendations. Even shorter, a few key facts they want people to know. If you'd like to see more, like the public release video and/or links to other parts of the report, go here.

The IoM comes down for a narrower definition and a new name. As a person who's had this illness for 22 years, I can tell you that what they say is bang on. This is really, really important. This is the biggest and best thing I've seen happen around my illness, ever.

SEID: systemic exertion intolerance disease. Start saying it. If you have connections to anyone in -- or adjacent to -- the medical field, please send them the IoM links. This new report and illness name could actually lead to research funding. We need research funding, badly. Without research funding we will never find cause and treatment. Immediately, it can lead to better understanding and attitude by medical pratitioners, which leads to better patient care. It can help patients explain their illness to anyone in their lives. This new name and this report can help so much. Please help spread it.

I'm so excited. This is hope.
steepholmsteepholm on February 23rd, 2015 08:45 am (UTC)
That's terrific!
Rebecca Rabinowitz: Hotter Than a Hot Dogdiceytillerman on February 23rd, 2015 10:16 pm (UTC)
Thank you! I'm feeling very "hope is kindled."
Ayelleayelle on February 23rd, 2015 03:02 pm (UTC)
Hooray! Thank you!
Rebecca Rabinowitz: Bea and Mr. Jonesdiceytillerman on February 23rd, 2015 10:17 pm (UTC)
You're welcome, and thank you! Spread far and wide if you so choose. How can I reach the town crier? I feel like I want to tell Everyone.
Ayelleayelle on February 23rd, 2015 11:49 pm (UTC)
I posted it on my Facebook page!
Rebecca Rabinowitz: House You Pass On the Waydiceytillerman on February 23rd, 2015 11:51 pm (UTC)
Oh, thank you so much! <3
Rikchikrikchik on February 27th, 2015 12:37 am (UTC)
This is great to hear!

Should SEID be pronounced like "seed" or to rhyme with "paid"? Or just spelled out every time?
Rebecca Rabinowitz: Hotter Than a Hot Dogdiceytillerman on February 27th, 2015 12:41 am (UTC)
Thank you!

I was wondering the same thing about pronunciation. Then I listened to the press conference, and they pronounced it by saying the four letters each time.

(Press conference might not be the right word -- the video they made to announce their findings, to release to everyone including press, but I don't know whether press was there at the time.)