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Newsletter - Sept. 2014

Finding Solutions and Improving Patient Quality of Life
Newsletter
  September 2014
Patient-Assistance Programs
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
Besides dealing with a debilitating illness, patients sometimes face other distressing circumstances, such as scary treatments, family circumstances and more. Learn more here.  
 
Fueling Advocacy  
and Doctor Visits
When 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.

A special thanks to PANDORA Org Ambassador Donna Robillard, and her family and friends for making these quilts.
Brochures you can use
for yourself, other patients and doctors
Thanks to a Purdue grant, three new PANDORA Org brochures are available for patients and to educate physicians:
 
a brief and overall understanding of
NEIDs for those
recently diagnosed. 
This brochure explains  our organization's activities and how to support the various ongoing projects. 
the latest information
for clinicians in how 
to treat and manage fibromyalgia. 

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.  
Opioid P2P Workshop Set for Sept. 29-30
The National Institutes of Health is hosting a workshop as part of its Pathways to Prevention (P2P) program. Two PANDORA Org representatives plan to attend this workshop. You can register to attend in person or by videocast.
 
You 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.

Many 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. 

CFSAC Charter Renewed with Changes 


The federal Chronic Fatigue Syndrome Advisory Committee charter has been renewed for another two years.  Here are a couple of changes:
  1. The 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 woman's disease.
  2. 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 population.
Read our letter urging the charter be renewed.
Read our spring 2014 testimony about ME/CFS needing a specialty home. 
Severe ME Noted in Radio Program
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.

That's 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.
 
You can also check the News page on our website daily because our Facebook feed is there.
May Awareness Presentations

This 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.

Many 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.

Now is the time for you to give comments on this report. Jennie Spotila gives a great overview of how you can participate and why you should. We will be announcing more as the process develops. 
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 publication.

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,
Lori Chapo-Kroger.  
The 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.

Our organization submitted comments on the best name for the disease, what doctors need to know about diagnosing it, and what features need to be included in the criteria they develop.
Your Congressmen
Need to Know about NEIDs
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 disease.

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   
  • Research grants
  • Partnerships with other patient organizations
  • Collaborations with academia and the biotech industry

PANDORA 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 families.   

DONATE NOW
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Helpers Wanted   
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
  • Video production
  • Graphic designers
  • Board members
  • Attorney
  • Bookkeeper

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
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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 here.
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 disease.

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  
The NIH is funding Mary Ann Fletcher's research into biomarker differences between men and women with ME/CFS. The data will also be analyzed with Gulf War illnesses research that was funded by the U.S. Dept. of Defense and the VA.
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. 
IACFS/ME
Sends Letter to
NIH Director   
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
Other Diseases


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  
"The Diane Rehm Show" had a episode on the increase of Lyme Disease and what may be causing it. As always, many patients gave lots of comments.  
Alzheimer's Drug Proposed as Treatment for Fibromyalgia   
The drug is called "memantine," and a study showed it reduced fibromyalgia symptoms except anxiety.
Could PEA
Reduce Neural Inflammation?

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.
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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.
CFSAC
Member Change

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.
Thanks for
your Votes

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
for Discoveries

You've heard it takes a village. Well, in medicine, it also takes collaborations with medical companies.

In July, the Open Medicine Institute announced a collaboration with four entities, including one focused on lung cancer.

The goal is to use large database bioinformatics that OMI believes will ultimately help with complex disease, such as ME/CFS and Lyme.  
What's the Best Treatment Protocol for You?
Recently, ProHealth published treatment protocols from a variety of ME/CFS experts, including PhDs, MDs, and a nutritionist.

The same was also done for fibromyalgia
Why Do You Hurt from Just a Touch?
New research shows the brain's response to what is supposed to be non-painful stimulus in fibromyalgia patients.

Some parts of their brains had abnormal activation and reduced activation in other parts. 
Is It Depression
or ME/CFS

Most patients can tell the difference, but many doctors can't.

One doctor says that many patients diagnosed with depression who are not responding to anti-depressants may actually have ME/CFS. 
Watch the Calendar
Do you want to know what's happening soon that will affect NEIDs patients? Do you know of something that will happen soon? Check out our calendar.
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