Finding Solutions and Improving Patient Quality of Life
Helping More and More Patients
With your support,
together, we are finding solutions and improving patient quality of life
through patient-assistance programs. At this moment, three PANDORA Org
programs are helping with practical needs and emotional support:
Pandora Org / NeedyMeds
Free Discount Card
Can be used in the U.S. for prescribed supplements, pharmaceuticals, medical supplies and over-the-counter medicines. Learn more here.
Covered In Love Quilts
dealing with a debilitating illness, patients sometimes face other
distressing circumstances, such as scary treatments, family
circumstances and more. Learn more here.
and Doctor Visits
we win, you win. Thanks to your votes in the recent online Citgo
Fueling Good contest, gas cards are given away through drawings
administered on our Facebook page. Learn more here.
Your donations fuel these programs. Thank you for your support.
Look Who's "Covered in Love"
"After weeks and weeks of lessening sleep, on a day I got
dropped by the doc trying to manage the sleep, and finally crashed as
well big time, I got this wonderful 'covered in love' quilt," said
Ellen Phillips, a recent recipient of one of these comforting quilts.
Your donations are helping with postage costs, so you are also covering patients with love.
These are currently being distributed to individuals and
physicians. If you are a physician with a clinic and would like to have
these to distribute to your patients or to other physicians, please contact us. If you are an individual and would like to show these to your physician, please contact us.
will be able to give comments on the presentations on the day of the
workshop and the day after. This is the best way you can have an
influence on the first draft of the P2P panel's report. Comments on the
workshop presentations will only be allowed during those two days.
You will learn about the P2P process and how you can participate.
patients are very concerned about the trend of increasing government
regulations causing new obstacles to chronic pain medication access.
This has an impact on NEIDs patients, including fibromyalgia patients,
who benefit from responsible opioid use. You can read a letter we sent to the FDA last year expressing our concerns.
You Make Advocacy Possible
Your votes for our online contests and your donations
make our advocacy projects successful. We always remember we speak for
patients with the goal of finding solutions and improving patient
quality of life. We depend on you.
Thank you for your support. You give us the power to do more.
New PANDORA Org Team
Members Bring More Talent to Serving You
Learn more about our new team members:
Mike Munoz, a new board member, bringing nonprofit organization especially in finances. His interest is in advocacy.
Keith Carden, a new board member, bringing experience with veterans and nonprofit funding. His interest is in patient assistance.
Dennis Mangan, a new public policy advisor, bringing experience in government health agency procedures.
Camille Carswell, a new ambassador, bringing education experience.
Her interest is in advocating to congressmen.
Sandy Sizemore, a new ambassador, bringing experience in youth church ministry. Her interest is in helping patients.
Donna Robillard, a new ambassador, bringing medical provider experience. Her interest is in helping patients with quilts.
administrative support for the committee is now from the Office of the
Assistant Secretary of Health instead of the Office on Women's Health.
This is a good change because the CFSAC is above and more comprehensive
than a committee in one health agency. Also, it is in the office of
someone who is just under the highest government health official in the
U.S. government, and it makes more sense because ME/CFS is not just a
A new designated federal officer has been
assigned to coordinate the meetings. Dr. Nancy Lee and her assistant
have been replaced. Barbara James, M.P.H.
is the new DFO. We will be contacting her soon to provide her
information on the disease and special needs of the ME/CFS patient
In honor of Sophia Mirza's birth date, Severe ME Day is gaining
momentum in exposing the severity and sometimes deathly disease. This
year, our own communications consultant, Tina Tidmore, was interviewed
on the radio. Geoff Langhorne's Hamilton, Ontario program, "Inside Job,"
highlights challenges for people on disability and has featured ME/CFS
before. Listen here:
Do you know the latest?
The best way to keep up with NEIDs news as it breaks, whether from us,
from scientists or in government actions, is through Facebook. If you
have a Facebook account, please
like our page.
not enough! Facebook has changed news feeds, limiting how many
followers see posts. If you don't want to miss any NEIDs news, make
sure you choose "Follow" on our Facebook page.
past May, we had two awareness projects. Thanks to Cheryl Graves, a
patient's mother, we were invited to
speak to the Opp, Alabama Rotary
Club on the topic of "The Other Polio." They
had a large turnout that
day, despite the heavy rainfall. Brochures on Lyme and ME/CFS and copies of the IACFS/ME Primer were distributed.
In Michigan, the
PANDORA Org local support group honored fallen NEIDs brothers and
sisters by putting their names and a message to doctors on a banner.
The assistant to the dean of Michigan State University, College of Human
Medicine accepted the banner to display in the university.
Your donations help cover the cost of travel and supplies
for these awareness projects. Thank you.
P2P Workshop for ME/CFS
Scheduled & Review Report Draft Released
The National Institutes of Health is hosting another Pathways to Prevention (P2P) workshop that concerns NEIDs patients. The December workshop agenda for ME/CFS has already been posted, but the speakers are not included, yet.
A report was just released that is intended to state what research shows pertaining to the main topics to be discussed at the workshop. In July, we
partnered with Janelle Wiley in sending in research to be included in their review. The goal of this report is to reveal where research is lacking.
patients are concerned that ME/CFS experts are included in the topic
and speaker selection, and will likely be speakers, but they are not on
the panel that made the research literature report or the panel making
the final report right after the workshop. A key missing question is
whether the varying definitions are of one disease or more. Knowing this
will affect patients, in August, we partnered with other organizations
in sending a letter expressing some of these concerns.
PANDORA Org Gives Two
Presentations at IACFS/ME Conference
Above you see three of the authors of a study that was included in a poster presentation at the March 2014 International Association of CFS/ME conference. They are Lenny Jason, PhD, a researcher from DePaul University; Lori Chapo-Kroger, RN, CEO of PANDORA Org; and Tina Tidmore,
contracted communications consultant for PANDORA Org. This research, a
survey of NEIDs patients, has been submitted to a medical journal for
We also gave an oral presentation on the best strategies for increasing NEIDs patient access to expert clinical care. Your donations
help fund these physician education efforts, so NEIDs patients can get
diagnosed earlier and get appropriate treatments, improving their
quality of life.
Michigan NEIDs Patients Ask for Hearing
State advocacy can make a difference. In July, after working with a couple of state legislators, we urged patients
to ask for a hearing on a resolution that declares NEIDs illnesses are
underserved in that state's medical systems. If you live in Michigan or
an adjoining state, please take a moment and send in an email. Don't let them ignore these illnesses any more.
PANDORA Org Supports
Blue Ribbon Foundation's Efforts
The Blue Ribbon Foundation
is filming "The Forgotten Plague." They included an interview with our president,
Blue Ribbon Foundation sponsored a 5K fundraiser in June, which
included a PANDORA Org runner. These funds will be used to create
fellowships to educate medical students about ME/CFS
IOM Meeting Focused on
Terminology and Educating Physicians
In May, the Institute of Medicine ME/CFS Diagnostic Criteria
Committee conducted a meeting where they discussed with some patients
and caregivers how they feel about the disease terminology and what
healthcare providers need to know about diagnosing the disease.
An opportunity has developed for government health policies
to change concerning the process for drug approval. ME/CFS and GWI have
no FDA-approved treatment, and better ones are needed for fibromyalgia.
More research is needed on what treatments are best for chronic Lyme
The 21st Century Cures Initiative includes congressmen determining how to improve the drug-approval process. A white paper was created, and comments are requested. We sent a letter outlining some suggested changes. Thank you for your donations that support our U.S. Congress advocacy.
PANDORA Org's Mission
Through the following efforts, we seek to alleviate the suffering caused by NEI diseases:
Advocacy for improving patient quality of life
Community awareness programs
Patient education projects
Physician education projects
Partnerships with other patient organizations
Collaborations with academia and the biotech industry
Org advocates for and works toward establishing centers of
excellence for research, clinical care, physician education and
government services assistance for NEIDs patients and their
Can you give a little time to make a big difference to those living
with NEIDs? We need indiduals to contribute in restoring a good quality
of life to people with NEIDs.
Our growing organization is in urgent need of volunteers to fill the following positions:
Content and grant writers
If interested in making the world a better place for the 20 million individuals afflicted with NEIDs, please contact Lori Chapo-Kroger. Thank you.
A Big Win for an ME/CFS Advocate
The NIH and Health
and Human Services contract with the Institutes of Medicine on studying
ME/CFS clinical criteria was confusing and mysterious. Jeannette
Burmeister, an attorney and ME/CFS patient, has taken them to court to
get the answers. And she won. Read of her unprecedented victory here.
Lyme Disease Legislation Passes U.S. House
Thanks largely to the efforts of New
York Rep. Chris Gibson, a bill requiring the NIH to form a workgroup
focused on Lyme and other tick-borne diseases just passed the House and
is now before the Senate. You can read the version that passed the house
ME/CFS Primer Changes with Controversy
The ME/CFS Primer for Clinical Practitioners
has been revised by an International Association of CFS/ME committee.
At the IACFS/ME conference in March, some, including IACFS/ME members,
said they disagreed with the change that said ME/CFS is not a fatal
Defining what is a fatal disease has also been a controversy concerning MS.
Australian Researchers Find MicroRNAs Different in ME/CFS
Sonia Marshall-Gradisnik is making great strides in ME/CFS research, particularly in immunology. A Sept. 19 article shows MicroRNAs are different in ME/CFS patients.
Nearly $2 Million Grant to Study Gender Differences in ME/CFS and GWI
Physicians' Experience with Lyme Documented
in Survey Study
A recently published study found 51% of the U.S. doctors they surveyed said they had treated at least one patient for a tick-borne illness.
Sends Letter to
In April, the International Association of CFS/ME sent a letter to NIH Director Frances Collins
asking for $7-10 million annually to be appropriated for Request for
Applications to fully benefit from the recent discoveries science has
discovered about the disease.
OFFER in Utah Sets Goal of New Clinic
The Organization for Fatigue &
Fibromyalgia Education & Research in Utah has set the ambitious goal
of raising $1.5 million to create the Shauna Bateman Horne Center of Excellence. With so many ME/CFS experts facing retirement, more of these centers are needed.
Ampligen Being Studied in
An August press release from Hemispherx says a research study shows Ampligen to be effective as an antiviral against SARS/MERS.
Another announcement from the company tells of a new study looking at the drug's effect on Ebola.
Lyme Disease Prevalence Increase Discussed on Radio
Health Rising did an article that looked at the buzz about whether
palmitoylethanolamide (PEA), made
from soybeans, eggs and peanuts, is useful as an anti-inflammatory. He
reports that this is hard to find in the U.S.
Share with a Friend
We're inviting more people to receive our emails. Know someone who is interested in NEIDs news? Tell them to sign up for our emails so they too will stay informed.
September is Pain Awareness Month
We encourage people
to join the discussion on September 24 at 1 p.m. by using hashtage
#painchat in their tweets and Facebook posts.
The Chronic Fatigue Syndrome Advisory Committee has members periodically rotating off and new ones replacing them. Dr. Susan Levine was made the chairperson. We were also pleased to see Donna Pearson be appointed as the patient advocate and Dr. Jose Montoya start serving in June. Check out the current roster.
Neuroinflammation In Hep C May Hold Answers for ME/CFS
A Health Rising article examines the work of Andrew Miller. The answer may be in the basal ganglia, the article says.
We recently made a
big push to win the online Facebook Turbana contest. While we did not
win, we did stay in the top 4 for quite a while. We appreciate your
continued support and want to remind you that such contests also help in
bringing awareness to NEIDs.
OMI Collaborations Holds Out Hope
You've heard it takes a village. Well, in medicine, it also takes collaborations with medical companies.