|Remember Gulf War Illness Sufferers on Veteran's Day|
Today, on November 11, in the United States, we proudly honor our Veterans. We highlight one of our members, Mary Ann Parker. The sacrifice for many veterans has unfortunately included their health. Mary Ann Parker is such a person. She served in the Air Force in the first Gulf War and who is also depicted on our latest brochure.
|Mary Ann Parker is a PANDORA supporter. |
Her story of physical decline, which is in the new PANDORA brochure, includes skin conditions, chronic fatigue, early menopause and chronic diarrhea. She now takes 57 different prescriptions for 16 different illnesses.
PANDORA recognizes these brave individuals who endure chronic illness. We work hard to advocate for these patients and for treatments. We look forward to the NEI Center™, which will provide so much for these deserving soldiers as they return home.
|New PANDORA Brochure |
By including real-life accounts, the new PANDORA brochure shows the impact NeuroEndocrineImmune disorders have on those stricken. We stressed that these illnesses can affect anyone, thus breaking stereotypical views.
|The striking front of the |
brochure leads people to
see what they can do.
The brochure also emphasizes that improvement can be made through the future NEI Center™. Read the brochure here.
We especially want to thank fibromyalgia patient, Brad Ellis; CFS/ME patient, Ryan Baldwin; chronic Lyme disease patient, Carol Fisch; and Gulf War illness patient, Mary Ann Parker for allowing their photos and stories to be put out to the public. Click here to visit our brochure page.
|Thank You, Volunteer Advocates|
|Thanks to the Internet, anyone who wants to advocate for improved treatment of NeuroEndocrineImmune disorders (NEIDs)can do more, on a wider scale, despite limitations. Today, we have many who set aside their own personal concerns to give to their fellow patients by pressing politicians, educating new patients, donating funds to advocacy organizations and much more.|
Because these illnesses are poorly understood, hard to diagnose, etc. patients have had to make change themselves and not depend on those in power. As Lily Tomlin said, "I always wondered why somebody didn't do something about that. Then I realized I was somebody."
As many think of where they are grateful in November, we can't miss this opportunity to say how much we appreciate these volunteers who are doing something to make things better for us all.
|Conference Leads to Possible Collaborations & New Cause-project on Facebook: ME-CFS Worldwide Patient Alliance. |
|The Oct. 17 New Jersey CFS Association conference gave PANDORA a great opportunity to build on relationships and form new ones. We took advantage of that opportunity. |
We look forward to working with individual patients and other patient organizations to further the PANDORA mission, improving NeuroEndocrineImmune disorder patient quality of life.
We are also proud to be involved with another amazing cause-project on Facebook under the application Causes®.: ME-CFS Worldwide Patient Alliance.
Join the cause-project. In very short time, the cause has raised $10,000 for the media campaign to create awareness for ME-CFS from the bottom up - from the patient voice.
One Voice, One Community, One Cause™
Together we can create positive change.
|Patients say "ACT NOW"|
|At the October Chronic Fatigue Advisory Committee meeting and in collaboration with other patient activists, PANDORA sent the message that government officials need to ACT NOW. They need to make CFS/ME a priority in research, establishing centers of excellence and improving patient access to social services.
|Here is Dr. Kenneth Friedman, Member of our executive board and Director of Public Policy holding the card that made the statement loud and clear at the CFSAC meeting.|
PANDORA was glad to provide the striking one-foot-wide cards with the bold words, which got the attention of the CFSAC members. In their public comments, two of them referred to the cards and the message.
In addition to the cards, patients showed they are uniting, as evidenced by a group displaying the cards while escorting patients when they stepped to the table to testify.
|PANDORA's Testimony: At the Chronic Fatigue Syndrome Advisory Committee, PANDORA took advantage of a great opportunity to highlight the need for centers of excellence. This is not an unusual request, as the CFSAC has been recommending the creation of five centers of excellence since 2003. The problem is, we still don't have them.|
Marly Silverman filled in on behalf of PANDORA's legal counsel, David Adonailo (unable to attend due to family illness). She mentioned the "catch 22" of congressmen saying they have given funding for the National Health Institutes (NIH), but they don't think they should dictate what government scientists should do in their research - i.e. to allocate for ME-CFS and related illnesses, yet researchers continue to say they need more money. Another conundrum developed when government researchers say they needed a measurable, biological marker to do research. Yet, one will not be found without more research.
Just like HIV, the high association of a retrovirus (
XMRV) with ME/CFS provides the opportunity to stop the merry go round and start real research.
Silverman's Personal Testimony: The dramatic tale of being forced to apply for Employee Retirement Income Security Act (ERISA) disability but then running into obstacles was Marly's individual testimony. This included being followed by agents of the insurance company. Reciting this experience brought back painful memories for Silverman. Many commented later that they appreciated her willingness to revisit that time to tell what many patients must endure. She described it as the toughest time of her life at a time she was most vulnerable. Silverman's suggestion to ensure patient most crucial needs are addressed, is that during the time a claimant goes through the denial and appeal process through their ERISA benefits, their medical coverage should not be dropped until the patient-claimant begins to receive Medicare through Social Security Disability benefits.
|New Video Reveals CFS/ME Conditions|
|Rick Carlson and Michael Thurston from Vermont, has created a video that brings the unseen conditions CFS/ME patients endure into the light of day. "Invisible" has already had public showings. The goal of this video is to educate family and friends of the true debilitating nature of the illness. |
PANDORA was the first organization to show the documentary in the U.S. outside of Vermont. We did it on June 8, 2009 during our special "Dinner and a Movie" sponsored by Gilbert's On 17th Street Restaurant.
A snip-it of the documentary can be seen here. This amazing documentary is now being shown throughout the U.S. creating awareness for CFS-Me and Fibromyalgia too. Kudos to the Vermont CFIDS Association for such a wonderful awareness project.
|The October Chronic Fatigue Syndrome Advisory Committee meeting brought many strong points to light. Here are some highlights:|
Dr. Dennis Mangan, who now oversees the CFS NIH Working Group: The name of the group will change to call the illness "ME/CFS," based on the comments from CFSAC members and patient advocates. Many patients expressed their approval by showing a hand-written message on the back of the white "ACT NOW" cards.
CFS Advisory Committee (CFSAC): Dr. Leonard Jason, a distinguished committee member commended Dr. Mangan. Based on Dr. Jason's motion, the committee embraced "ME/CFS" and said they would like to change the name of the committee to reflect the move towards a name change for CFS.
Although this does not officially change the name of our illness, as far as other government agencies and publications in journals, it does show that years of patient advocacy is working. From the ground up, change is coming. Grass-roots efforts need to continuing in a most united and collaborative fashion.
Dr. Gudrun Lang: Proper neuropsychological tests show CFS patient brains "shut down". Multi-tasking creates the same effect.
Dr. Ted Becker: Charts show that CFS/ME patients have different heart rate and oxygen absorption reactions to activity. This is true whether compared to health people or deconditioned people.
Cort Johnson: The NIH can fund research into what it wants to research. CFS research has gone down while research into other illnesses has gone up.
Bob Miller: Urged Committee Chairman Dr. Christopher Snell to meet with Dept. of Health and Human Service Secretary Kathleen Sebelious. "If she won't meet with you do it anyway," Miller said. "That's what I did. And I got a meeting with the NIH."
Mary Schweitzer: The definition used by psychiatrists in the UK includes anyone with fatigue. The question: "Does XMRV cause CFS?" is the wrong question, she said. "Well, what CFS?" She suggested researchers define this disease by looking at those who got sick in the outbreaks, particularly the Truckee outbreak. Go back to the good research published in the 90s, she said.
Mike Dessin: Urge the CFSAC to address the name change and make it ME - myalgic encephalomyelitis. Click here to see his video testimony on October 13, 2010. You can see patient advocates escorting Mike to the public testimony seat with the wonderful ACT NOW cards, which were provided by PANDORA.
We encourage you to visit the CFSAC web site and see the entire 3 day meeting on video. Thank you Dr. Wanda Jones for taking the leadership and ensuring that on-time video recording of the CFSAC meetings are now the norm. Click here to see the Empty Chair Project pushing for this to happen. Other patient groups also worked hard in getting our government to cover to record the meetings.
With such great success in the Chase Community Giving project, we feel that we can work together and do more. So....
Let's Do it Again!
American Express is offering $200,000 to five different charities every three months. People vote for their favorite charities once a week. The next three-month round of voting starts on Jan. 1, 2011, but they are accepting nominations for that period now. To be eligible, a non-profit organization must be nominated by many people, meet the American Express requirements and be approved by the TakePart Advisory Board.
- being operationally stable
- Having a presence across the United States
- Having a clear and meaningful mission
- Having a broad support base
- Serving diverse audiences
To read complete information on the American Express Project, go here.
We can't pass up a chance at $200,000.
Go here to fill out the nomination form.
Be sure and enter the full name: Patient Alliance for NeuroEndocrineImmune Disorders Organization for Research and Advocacy, Inc. For step-by-step instructions and a specific suggestion for the comments window, go here.
After nominating P-A-N-D-O-R-A, we encourage you to do the same for other patient organizations.
|Petition to U.S. Secretary of Health|
By popular demand, we have set up a "sister" petition on Change.org asking US Secretary of Health & Human Services, Kathleen Sebelius,
to meet with P-A-N-D-O-R-A concerning funding for the NEI Center(TM). We were surprised to find people signing the petition within minutes of our posting it. If you have not signed the petition we have on Facebook and are not on Facebook, then please sign this other petition here.
NOTE: if you have already signed the petition on Facebook, please do not sign this sister petition. This sister petition is for those who do not use Facebook.
As of November 10, the Facebook petition had 1,833 signatures.
Sign the Facebook petition here...
|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™.