IOM/SEID Analyzed, MEadvocacy.org Clarified
MEadvocacy.org was formed last year with the purpose of promoting and supporting advocacy efforts for the disease Myalgic Encephalomyelitis (ME). At its inception, organizational goals and certain campaigns were outlined, chosen and adopted.
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MEadvocacy on WLWT News
Due to the publicity from the IOM Criteria release, chronic fatigue syndrome and systemic exertion intolerance disease are in the news. No matter what your opinion of the new name and criteria are, this is a great opportunity to make the public more aware of the crisis of severe ME patients and the great need for more research, as well as draw people to our website where they can become even more educated.
We have recently recruited quite a few volunteers to speak to the media in as many cities as possible to get these topics more exposure. This is the first interview from WLWT News in Cincinnati, OH.
http://www.wlwt.com/news/low-awareness-often-makes-chronic-fatigue-syndrome-diagnosis-difficult/31715400
Need Spokespeople for the Media
We are looking for people to tell their personal stories about this disease, for television in as many cities in the US as possible. You must be based in the US for this project.Both patients and/or caregivers who can speak on your behalf are acceptable. If necessary, we can arrange for the interview to be in your home, so you don't have to leave your home.
If you are interested in doing this, please sign up by using the blue Volunteer button in the right hand column.
Select Spokesperson2.
Fill out the form with your name, email and address (if you're already a member, the form won't ask for this)
We will refer you to our PR firm who will make arrangements from there.
The deadline for signup is Wednesday March 11, 2015, midnight EDT.
Archive - Donation Page Intro
"HHS, NIH, fasten your seat belts and return your tray table to the upright position because it's going to be a bumpy ride:)" Susan Maier (NIH)
I'm sure Ms. Maier didn't realize just how prophetic her statement would become. ME patients are disgusted and disgruntled with the mistreatment perpetrated on this extraordinarily sick population by the NIH and CDC. We're mad as hell, and we're not going to take it anymore!
With FOIA access gained to internal documents from the IOM and P2P projects, the upcoming final P2P workshop, as well as upcoming IOM and CDC Multisite results, the time is now perfect for an all-out publicity campaign.
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MEadvocacy in Washington Post
You asked for publicity for the organization and our cause - here it is.
http://www.washingtonpost.com/news/to-your-health/wp/2015/02/25/new-chronic-fatigue-syndrome-report-doesnt-help-us/
Now Is the Time to Stand Up For M.E.
It may seem like things have been a bit quiet on our end since the Institute of Medicine (IOM) Diagnostic Criteria for ME/CFS committee’s release meeting, but I would like to assure all of you that we’ve been working as hard as we can on your behalf. Because of your generosity and support, we are still here and focused on bringing our demands to fruition.
We have grown quite a lot over the past few months. I have organized what was previously an informal group of advocates, into a formalized MEAdvocacy.org Advisory Group. There are over a dozen volunteer patient members of this group including myself, Joni Comstock, Anne Keith, Kathryn Stephens, Gabby Klein, Robin Funk, Tom Jarrett, Colleen Steckel, Lisa Petrison, Tracey Ann-Tempel Smith, Polly Gilreath, and Mindy Kitei. We plan on adding more.
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Tell HHS What You Think of the IOM Committee’s Proposed Name for the Disease Currently Called “ME/CFS”
Reposted with permission and collaboration from http://paradigmchange.me/wp/name-evaluation/
LINK TO THE SURVEY
This page provides information about a short survey designed to evaluate a proposed new name for the disease that the U.S. government is currently calling ME/CFS.
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IOM Diagnostic Criteria for ME/CFS Preliminary Assessment
The Institute of Medicine Diagnostic Criteria for ME/CFS was released on February 10, 2015. ME patients have been busy studying the report and its ramifications.
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The Strategy Behind Renaming and Redefining Chronic Fatigue Syndrome in 2015
Guest Blog Post by Jerrold Spinhirne, S.E. - The views expressed may or may not represent the views of MEadvocacy.org as a whole.The US Department of Health and Human Services (HHS) has paid the non-profit Institute of Medicine (IOM) $1,000,000 for the naming rights to the established neurological disease myalgic encephalomyelitis (ICD G93.3 ME). This is not science, but the exercise of raw political and economic power. The ridiculous name the IOM committee came up with after "much thought" has no legitimacy whatsoever and should be scrapped before more precious time and resources are wasted.
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IOM Diagnostic Criteria for ME/CFS - Live Webcast February 10, 2015, 11am EST
On Tuesday February 10, at 11am EST, The Institute of Medicine will release its report on Diagnostic Criteria for ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome).
For your convenience here is a time zone converter: http://www.timeanddate.com/worldclock/converter.html
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