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About the
NAME-US.org Banner Images |
The National
Alliance for Myalgic Encephalomyelitis
has renewed its web page banners for 2011. NAME-US.org was
created in 2006 by long-time, severely affected patients from
coast to coast reaching out to each other in solidarity, holding
onto life, supporting one another despite adversity and
isolation. In the process, we also reached out to the ME
and CFS research community and patient advocates for their
support in bringing the realities of the severity of ME and CFS
to light within the general population, to the US Congress, and
to the medical community through this website and patient
advocacy. Researchers long dedicated to this field have
been our greatest hope; we thank them for the information that
fills most of the pages of this website. We're grateful
they have persevered for decades against all odds, just as many stalwart patient advocates have
done.
As our own health rapidly deteriorates, we hold firmly onto
their grasp of this disease on a complex scientific scale as
well as their compassion for the devastating affects on each
individual patient.
The lack of identity of
the human figures in our banner images, coupled with the
bold acronym NAME, have been a salient call to restore this
disease's medically correct designation and provide clear
identity to a million individuals in the US who suffer, most
still unidentified, with this disease. Most patients aware
of its history will agree that the entity of "CFS" and its definition were manufactured when M.E.'s
identity was mistaken, mostly ignored, and even ridiculed by U.S. government
officials during several M.E. outbreaks in the mid 1980s.
This discrimination has left the faces of most patients
invisible, long hidden from society. This discrimination has
forced patients into seclusion and poverty as much as the
disease itself has. This discrimination continues. Most patients are still often maligned
rather than given the validation, much needed
medical care, compassion, and disability benefits deserved of
any person with a painful chronic progressive disease in a civilized society. As Professor Malcolm Hooper
(UK), Dr. Leonard Jason (US), and many other
ME/CFS experts openly agree, the proper designation and
definition of this disease need to be restored and updated to
reflect the most recent advances in scientific knowledge, as
well as its true serious nature, to help rid patients and
researchers alike of the stigma and minimalization attached to the "F" word in
"CFS."
(On our Home page, Dr. John Greensmith eloquently explains why
this is so crucial.) The time is long past due to
appropriately NAME-US! Our new banners reflect our belief
that the time is nearly at hand. |
