|Virus News Causing Change|
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|
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.
Ryde for Lyme|
|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.
|One Voice to End Pain|
Bring your VoiceP.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|
You will be hearing from our new communications director, Tina Tidmore
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.
|CFSAC Charter Renewed|
CFSAC is a committee reporting to the Department of Health and Human Services 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:
At the time of publication, the details of the new charter have not been posted. Look for this information in a future newsletter.
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.
|Petition to U.S. Secretary of Health|
|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...
|NEI Center: Our mission statement|
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™.