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PANDORA Busy in Advocacy this Fall
Newsletter
October 2012

Efforts Lead to Productive Meeting with FDA 

PANDORA's advocacy work continues, along with the extra work to merge with CFS Solutions of West Michigan.

PANDORA, along with other organizations and patient advocates, led an advocacy campaign that resulted in the  U.S. Food and Drug Administration hosting a stakeholders meeting on Sept. 13. In that phone meeting, the FDA said they have eight applications for ME/CFS treatments, most of which are supplements. They also said they consider ME/CFS to be a serious or life-threatening condition with no current drug treatments. This designation means drug applications for ME/CFS are accelerated.
  • See the letter PANDORA sent calling for this meeting. 
  • See a summary of the meeting. 
  • See the new FDA webpage set up for ME/CFS.

CFS Solutions Chosen to Give Organization Presentation at CFSAC and Public Testimony 

On Oct. 3 at 11:30-11:45 a.m. EST, PANDORA president Lori Chapo-Kroger will give public testimony on the status of the proposal to correct the coding error for CFS in the ICD-10-CM.

On Oct. 4 at 1:30 p.m. EST, Lori will give a presentation to the Chronic Fatigue Syndrome Advisory Committee about CFS Solutions of West Michigan and the work that is continuing after merging with PANDORA.

We ask all to tune in during that time through the Internet for the live video-stream of the meeting.

Also, the CFSAC announced a new charter, which includes a new provision for three non-voting members of non-government patient organizations. We hope to hear more details on the process on choosing these representatives. 

PANDORA Sponsors  

Survey with Goal of  

an NEI Center in Alabama 

Deep in the Heart of Dixie, some progress is being made toward creating an NEI Center. Alabama in U.S. map
After meeting with the CEO of a five-hospital system in Alabama, PANDORA sponsored a patient survey on behalf of the hospital administrators. A preliminary summary report of the survey was provided to them. At this point, they have agreed to provide education courses for their physicians and nurses on ME/CFS, Lyme disease and fibromyalgia next spring.  
 
This survey will also provide facts to be included in a resolution we hope the Alabama legislature will pass in their next session. The information will be used in a future meeting with an insurance company, with the goal of getting more support for an NEI center. We have also had some interest from a researcher in having the survey published in a medical journal.

The survey ended on Sept. 30. We will keep you informed of the progress.  

PANDORA President Represents Coalition at ICD-9-CM Coordinating Committee  

In September, current PANDORA president Lori Chapo-Kroger traveled to Baltimore, Maryland to represent the Coalition 4 ME/CFS proposal to restore CFS into the neurological category in the ICD-10-CM (the code manual clinicians use for diagnosing). This is important in influencing physician attitudes and insurance reimbursements, as well as distinguishing ME/CFS from fatigue as a symptom that could be from any of a number of other diseases. If the proposal is adopted, it will correct a coding error done years ago and make the U.S. clinical code book come in line with the rest of the world. 

Mary Dimmock, who is the mother of an ME/CFS patient, and Dr. Andy  Kogelnik also spoke in favor of the coalition's proposal.

The Chronic Fatigue Syndrome Advisory Committee and the International Association for ME/CFS has also given statements in support of the coalition's proposal. 

NEIDs Patients Come Out of Isolation for Tour of Gardens 

In this photo are a Gulf War illness, ME/CFS patient, fibromyaglia patient and chronic Lyme disease patient with one healthy person. They enjoyed the CFS Solutions-sponsored tour at Frederik Meijer Gardens & Sculpture Park. Patients were pushed around the gardens in wheel chairs and rode the tram. A special thanks goes to the healthy volunteers for a wonderfully uplifting experience.  
ME/CFS Quilter
Asking for Your Help

Janet Wildeboer of Kentwood, Mich. is asking for quilt squares. "I want to invite everyone to make squares 8x10 inches of fabric," Janet said. "Would like your name and how long you have been sick." She said it can be fancy or just hand-written information on fabric pieces, even cut outs of pajamas. She asks for a $1 donation to cover the backing; she will do the work.

This is not the first time a quilt was made to bring attention to this disease. "Back in 1998, Susan Best made a quilt by hand, and it is very large, 11x17 with all the squares sent to her by people who suffer from CFIDS," said Janet.

Send the squares to:
Janet Wildeboer
5385 Effingham S.W.
Kentwood, MI 49508
jwildeboer@yahoo.com
616-281-3088
 

$20 Gives You a Chance for a Week in an Orlando Resort 

Resort 
In PANDORA's 2012 Advocacy Raffle, just $20 gets you a chance to win 7 days at Westgate Lake & Resorts Spa in Orlando, Florida.   
Radio Interview
If you missed it, listen to this August interview with PANDORA founder Marly Silverman, PANDORA president Lori Chapo-Kroger, Dr. Andy Kogelnik and PANDORA advisor Kenneth Friedman.

Spring CFSAC Videos Available   


The June CFS Advisory Committee videos are now available online. We encourage you to view them, particularly the one where Marly Silverman gives a review of PANDORA's organization and past accomplishments.

Be sure and give your comments and share these videos with others.
Chronic Fatigue Syndrome Advisory Committee (CFSAC) Meeting, Day 2, June 14, 2012. 1:15pm to 2:15pm
Go to 20 minutes into the video to see Marly's presentation.
Also, the video of PANDORA's testimony, as read by our communications advisor, Tina Tidmore, is available.
Chronic Fatigue Syndrome Advisory Committee (CFSAC) Meeting Day 2 June 14, 2012 11:30am to 12:15pm
Go do 15 minutes into the video.
Researchers Recognizing 
Pain Conditions Overlap
One of the reasons PANDORA embraces the NeuroEndocrineImmune disease concept is because the multi-system diseases often overlap with each other. Now, the National Institutes of Health is noticing this.

In August, the NIH sponsored the  Spotlight on Chronic Overlapping Pain Conditions Workshop. This workshop focused on the pain conditions that often overlap, such as fibromyalgia, ME/CFS, vulvodynia, migraines, TMJ, interstitial cystitis and irritable bowel syndrome.

Dr. Daniel Clauw and Dr. Elizabeth Unger -- names many NEI patients will recognize -- co-chaired the event. Kim McCleary, of the CFIDS Association, participated in the Patient / Advocate Forum portion of the meeting.

The goal was to find commonalities in the condition and form a research agenda.  
In This Issue
FDA Advocacy Leads to Stakeholder Meeting
CFS Solutions Giving Presentation at CFSAC
NEI Center Efforts in Alabama
ICD-10-CM Correct Coding Effort Continues
Garden Tour Brings Joy
Needing Fabric Squares for Quilt
2012 Advocacy Raffle
DONATE NOW
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Research
News on ME/CFS 
Highlighted: Original researchers of XMRV say the human-made virus is not associated with ME/CFS
-At the press conference, Dr. Ian Lipkin said the samples collected will lead to much better research. Already researchers are asking to use the samples.

Other news:
P-A-N-D-O-R-A.ORG

We have a new website!

Pandora new website

Gulf War
Illness in the News 
The Missouri News Horizon reported that Gulf War illness patients face many years of struggle to get disability.

Gulf War syndrome is being researched at Peoria; thinking it is caused by anti-nerve gas drugs and insect repellants.
Donate to PANDORA
 Through EBAY Giving  
ebayEbay Giving Works is a special program where a percentage of sales can be donated to a charity organization. We want to thank several merchants, who have already supported and continue to support us. Here are the instructions. 
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Fibromyalgia Research News
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Lyme News

Highlighted:  Presidential candidate flier targets Virginians concerned about Lyme disease 

 

Other Lyme News

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PANDORA's June Letter to the American Psychiatric Association Challenges Diagnostic Criteria
The American Psychiatric Association has their own diagnostic manual for mental health disorders. One of their proposed disorders is so vaguely worded that NEI patients could end up with this diagnosis, erroneously.  
 
explaining how their criteria is not appropriate and the harm it would do if it is accepted as it is proposed.

New Fibromyalgia Theory and New iPhone App for NEI Patients from Alabama Doctor
iPhone App









 


A company in Tuscaloosa, Ala. has created an iPhone app
that monitors your daily activity for the purpose of guiding you to better health. The president of the company said it was particularly designed for those with fibromyalgia, chronic fatigue syndrome, GERD, migraines, irritable bowel syndrome, headaches and chronic pain patients.

We have not heard any reviews of it and cannot give an opinion of its effectiveness.

The company offering the phone app is Innovative Med Concepts, which announced research
based on their theory that fibromyalgia is caused by herpes simplex virus.
PANDORA's Mission

Through the following efforts, PANDORA seeks 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 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.

Join our organization by signing up for the newsletter here.

Phone: 231-360-6830

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