Virus
News Causing Change
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ME/CFS patients and the news media gave much
attention to the findings in the August 23 NIH and FDA study that
found a family of murine leukemia viruses in 87% of patients. The
atmosphere has changed as researchers have now taken great interest
in this illness shown by the hundreds if international researchers
who attended the XMRV conference on Sept. 7-8. Learn more about
this study here.
In response, P.A.N.D.O.R.A. made a call for quick action. Read it
here. Robert Miller, a long-time CFS patient,
included this powerful statement with a petition that was
delivered to government officials at the conference. Additionally,
he delivered the P.A.N.D.O.R.A. petition calling
for the U.S. Secretary of Health to meet with P.A.N.D.O.R.A.
members about establishing the NEI Center.
Prohealth reports that nine
patients and Dr. Dan Peterson of Nevada had a very frank discussion
with with three top-level NIH officials about the past failings and
future expectations.
Look for a P.A.N.D.O.R.A. summary of the Sept. 8 conference
webinar.
Importantly, this news may also lead to improved treatment and
recognition for not only ME/CFS patients, but also Gulf War Illness / EI suffers,
fibromyalgia sufferers and
Lyme disease sufferers.
These illnesses often overlap and share many biological
abnormalities. At least one researcher has contacted us to inform
us he is studying a possible link between chronic Lyme disease and
these retroviruses.
We are looking forward to researchers discovering what other
illnesses are associated with high rates of these
retroviruses. |
Chase
Community Giving Winnings Attracts Attention
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A newspaper ad in the Florida Sun-Sentinel gave
P.A.N.D.O.R.A. some welcomed attention. Thanks to the support of the
NeuroEndocrineImmune disorder patient community, $20,000 will soon
be forwarded to us to help us reach the ultimate goal, a better
quality of life for these patients.
With such great success, we think there is more we can do.
So....
Let's Do it Again!
This time, we also want to help other patient organizations.
American Express
is currently offering $1 million split among five charities every
three months, with the next voting period starting on Jan. 1, 2011.
To be eligible, a non-profit organization must be nominated by many
people and be approved by the TakePart Advisory Board. Go here to see their
press release.
We want "Patient Alliance for NeurEndocrineImmune Disorders
Organization for Research and Advocacy, Inc." and the "Whittemore
Institute for NeuroImmune Disease" to be included in the next
round. Please go here and nominate
these two non-profit organizations using the complete name as you
see above. The nomination process for each organization must be
done separately.
This is an opportunity for you to nominate your favorite patient
organization, also.
Remember, if P.A.N.D.O.R.A. wins some money, it will be used
primarily for establishing the NEI Center™ to advance
research and improve patient quality of life.
We can't pass up
a chance at $200,000.

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Ryde for
Lyme
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The Lanford Foundation is coordinating with some
Florida college girls for a bicycle ride October 16-17. The route
will go from Gainesville to Tallahassee, Florida through the state's Nature
Coast.
Spaghetti and some other food will be provided to participants.
Lime-colored shirts will also
be provided.
The money will go to help another young woman with Lyme disease
who has struggled to pay daily living expenses as a result of her
severe illness and lack of adequate health care.
Patients can be sponsors and offer donations to go directly to
helping this woman. Go here for more
information.
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One Voice
to End Pain
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Bring your Voice
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P.A.N.D.O.R.A.
is supporting the American Pain
Foundation and National Fibromyalgia Association efforts this
month as September is Pain Awareness month.
"We're gathering a louder and bigger voice, more voices, and as
they join together with the same message, I see that there is hope
that something is going to change," said one of the patients in a
video on the Foundation website. "We can't ignore all of these
voices."
As you know, P.A.N.D.O.R.A. advocates that we speak with "one
voice" as "one community" with "one message." We urge patients
offer to help this effort through a survey on the APF
website. |
New
Communications Director
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You will be hearing from our new
communications director, Tina Tidmore
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As of September 1, Tina Tidmore joined P.A.N.D.O.R.A. as the new
Media and Communications Director. Tina has already increased our
efficiency.
You will see more improvements, including a modernized
website.
She brings us her 14 years of experience in the news media,
including reporting and advertising. She also has 22 years of
experience in sales. She will be working remotely, mostly from her
home in Clay, Ala.
Already, she has increased awareness with an article in The
Birmingham News with a few details of her personal experience with
CFS.
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CFSAC
Charter Renewed
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CFSAC is a committee reporting to
the Department of Health and Human Services
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Renewal of the
Chronic Fatigue Syndrome Advisory
Committee charter has been approved.
This committee makes recommendations to
the assistant director of the Department of Health and Human
Services. The issues they include
are:
-
factors affecting access and care for
persons with
CFS;
-
the science and definition of CFS;
and
-
broader public health, clinical, research
and educational issues related to
CFS.
At the time of publication, the details
of the new charter have not been posted. Look for this information
in a future newsletter.
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Petition
to U.S. Secretary of Health
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Join
P.A.N.D.O.R.A. in asking U.S. Secretary of Health & Human
Services, Kathleen
Sebelius to
meet with P.A.N.D.O.R.A. to ensure her support for aggressive and
substantial funding for the NEI Center(TM) and other similar
facilities throughout the U.S.
Sign the petition...
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NEI
Center: Our mission statement
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The NeuroEndocrineImmune
(NEI) Center™ is a community
patient-driven grass roots project of P.A.N.D.O.R.A, in partnership
with the Lanford Foundation-Lifelyme,
Inc.
It is the first research
center to incorporate biomedical engineering
scientific and clinical research, and integrating patient computer
aided disease diagnosis and treatment (CADDT) specifically designed
for multi-system illnesses and
complex
diseases.
To read the entire mission statement and for more information,
go to P.A.N.D.O.R.A.'s Facebook Cause
Page for the NeuroEndocrineImmune (NEI)
Center™. |
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