~*Online WACOC News May 2012*~
- From: Diana Saba <dgsaba@xxxxxxx>
- Date: Wed, 2 May 2012 12:56:50 -0700 (PDT)
Women and Children of CFIDS + Men
WACOC + M
~*A comment or two*~
The following article was in the Needham Hometown Weekly
(hometownweekly.net) on April 26:
Foundation raising awareness for CFIDS
by JOSHUA PERRY
• Thu, Apr 26, 2012
The National CFIDS Foundation, based in Needham, has been fighting since
1997 to raise awareness and promote research that will help find a cure for
Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) or, as it is
officially diagnosed, myalgic encephalomyelitis (ME). The foundation is seeking
to educate the public and put to rest the myths that surround the disease.
According to Gail Kansky, one of the founders of the organization and a
longtime advocate for CFIDS awareness, the most important factor in changing
public perception is to understand that it is a neurological disease, not
simply a psychological issue as it has been portrayed. The foundation added
Immune Dysfunction Syndrome to their name to emphasize this point.
Kansky, who is currently the organization’s Executive Director, previously
worked with with a state organization after spending many years trying to
find a correct diagnosis for her daughter, who suffers from ME. The
National CFIDS Foundation has set about linking researchers that may not have
realized the connections between their work and trying to fund research efforts
to find the cause of CFIDS. “Until you find the cause, you can’t find the
cure,” said Kansky.
Recently, the organization has found national success with a researcher in
Hawaii and researchers at Wayne State University, in Detroit. The Wayne
State research made regional news in Michigan because it linked CFIDS with
Gulf War Syndrome in soldiers returning from the Middle East. Researchers
found evidence of broken chromosomes not just Post-Traumatic Stress Disorder.
The ability to link research efforts has been crucial to the progress in
finding the causes of CFIDS. This is made especially important considering the
lack of national recognition or support that CFIDS research receives.
“It’s known nationally as the ‘Yuppie Disease’,” noted Kansky. “Calling
it chronic fatigue is a way of putting the disease down. It could be two
or three years for the cause to be found but would be years before the world
hears about the cure or treatment options.”
For those suffering from CFIDS, time is of the essence. The syndrome has a
litany of symptoms that accelerate and amplify over time. Symptoms include
central body weakness, fevers, flu-like symptoms, post-exertional malaise,
sensitivity to foods, impaired cognition, non-restorative sleep, balance
issues, and more. Many of these are sympotamatic of other issues as well,
which makes the diagnosis of ME very difficult.
The battle to find a cure for CFIDS/ME and to put an end to the suffering
of an estimated 100,000 Americans is very personal for Gail Kansky and the
other volunteer members of the organization. The impetuses for their work
are friends and family members. The members of the foundation have seen
first hand the debilitating effects of the disease and are striving to ensure
that future generations will not have to suffer as well.
Kansky modestly noted that the motives of the organization’s members is
not purely philanthropic, “I’m not an extraordinary person. I was just angry
and I needed a way to channel that anger.”
If you would like more information about Chronic fatigue and Immune
Dysfunction Syndrome or myalgic encephalomyelitis, visit the National CFIDS
Foundation website at www.nfc-net.org. — Hometown Weekly Staff
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In memory of those remembered
International Awareness day is May 12. Awareness is a precious gift!
Soft hugs & prayers,
Disabled Retired Nurse
Proud member of NCF
M.E. Deserves Quality Research
"What lies behind us and what lies before us, are tiny matters,
compared to what lies within us"
~Ralph Waldo Emerson~