Anonymous
Not logged in
Talk
Contributions
Create account
Log in
Search
Editing
National Alliance for Myalgic Encephalomyelitis
From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history
Namespaces
Page
Discussion
More
More
Page actions
Read
Edit
Edit source
History
Warning:
You are not logged in. Your IP address will be publicly visible if you make any edits. If you
log in
or
create an account
, your edits will be attributed to your username, along with other benefits.
Anti-spam check. Do
not
fill this in!
[[File:NAME-US logo.jpg|right|thumb|'''NAME-US''']] The '''National Alliance for Myalgic Encephalomyelitis''' (NAME-US) is a small American patient advocacy group lobbying for improved disease definition. ==Aims== *To increase awareness of the urgent need for formal recognition of [[myalgic encephalomyelitis|ME]] as a disabling neuroimmune disease *To increase awareness of the need for a research definition based on hard evidence of multiple body system abnormalities, not on degrees or variations of "fatigue," or a within broad category of fatiguing and psychological illnesses. *To advocate for the implementation of the [[Myalgic Encephalomyelitis]]: [[International Consensus Criteria]] and the [[Nightingale definition]] of [[Myalgic Encephalomyelitis]] ([[myalgic encephalomyelitis|ME]]) not only here in the U.S, but worldwide, to make these valuable documents available to all health care professionals, and to support their operationalizing to an international research definition. *Through the above actions, bring the internationally used and correct term, [[myalgic encephalomyelitis|ME]], into common usage and familiarity in every medical establishment and household in the U.S. This disease needs to be distinguished from [[Chronic fatigue syndrome|CFS]], for the benefit of both [[myalgic encephalomyelitis|ME]] patients and those diagnosed with [[Chronic fatigue syndrome|CFS]] that do not fit [[myalgic encephalomyelitis|ME]] definitions. Some treatments for cfs can be seriously harmful for those with clearly defined [[myalgic encephalomyelitis|ME]], and some [[Chronic fatigue syndrome|CFS]] patients are prematurely (mis)diagnosed without thorough screening for [[myalgic encephalomyelitis|ME]] or other serious but treatable illnesses, and everyone in this country and abroad - medical practitioners and general public alike - needs to be aware of these facts.<ref>[http://www.name-us.org/Goals.htm NAME-US - Goals]</ref> ==Notable people== The co-founders of NAME-US are Steven Du Pre and Lois Ventura.<ref>[http://www.name-us.org/AboutUs.htm NAME-US - About us]</ref> ==History== NAME-US.org was created in 2006 by long-time, severely affected patients in the US.<ref>[http://www.name-us.org/AboutPageBanner.htm NAME-US - About our page banner]</ref> ==Online presence== *[http://www.name-us.org/ Website] ==References== {{Reflist}} [[Category:Patient groups]] [[Category:American patient groups]]
Summary:
Please make sure your edits are consistent with
MEpedia's guidelines
.
By saving changes, you agree to the
Terms of use
, and you irrevocably agree to release your contribution under the
CC BY-SA 3.0 License
and the
GFDL
. You agree that a hyperlink or URL is sufficient attribution under the Creative Commons license.
Cancel
Editing help
(opens in new window)
Templates used on this page:
Template:Main other
(
edit
)
Template:Reflist
(
edit
)
Module:Check for unknown parameters
(
edit
)
Navigation
Navigation
Skip to content
Main page
Browse
Become an editor
Random page
Popular pages
Abbreviations
Glossary
About MEpedia
Links for editors
Contents
Guidelines
Recent changes
Pages in need
Search
Help
Wiki tools
Wiki tools
Special pages
Page tools
Page tools
User page tools
More
What links here
Related changes
Page information
Page logs