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Now You Have an Opportunity
to Make a Difference
October 23, 2012

FDA Wants Your Comments  

PANDORA has been busy in advocacy this summer, working with other organizations and patients. We are now seeing the results. You also have an opportunity to move the cause forward.

The FDA is considering ME/CFS among 38 other diseases for possible special attention in their patient-focused drug development initiative, which would improve conditions for drug approval. They are asking for public input. We ask you send them your comments by the Nov. 1 deadline. See instructions here.  
  • See the new FDA webpage set up for ME/CFS to see their other meetings.
  • See instructions on a Dec. 20 public meeting on Ampligen. 

Vote Daily for  

Gas Cards to Help Patients 

Citgo Fueling Good CFS Solutions of West Michigan is in the running to win $5,000 in gas cards from the Citgo Fueling Good contest.

Click here to vote.

Daily voting will continue until Nov. 28, when the top four charities in each region will win the gas cards.

Join this Facebook group to receive daily voting reminders.

PANDORA will use the cards for patients to go to doctor visits and volunteers to bring meals to patients. You have the power to make that happen.

PANDORA Gives Organization Overview to CFSAC 

PANDORA president Lori Chapo-Kroger traveled to Washington, D.C. to tell the CFS Advisory Committee about PANDORA's recent and future activities 
Lori CFSAC Oct. 2012 about PANDORA 
Go to 11:00 into the video to hear the presentation.  
PANDORA Press Release Brings Attention to Government Actions 
With government leaders in the Dept. of Health and Human Services and the CFSAC taking note of the U.S. president's interest in ME/CFS, we wanted to make sure the news media and the public knows it too. PANDORA does not endorse any political candidates. However, we wanted to build on the momentum of recent high-level government attention, including the FDA efforts with a workshop meeting next year and CDC efforts to improve the current criteria.

On Oct. 16, PANDORA sent a press release telling of this high-level attention and actions in government agencies. As of Oct. 22, the report showed that the press release had been posted on 178 news websites.  Additionally, the one on PR Newswire had 1,108 views, including 132 reporters who receive press releases from the company.  

$20 Gives You a Chance for a Week in an Orlando 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.   
Coalition 4 ME/CFS Second Proposal Explained at CFSAC 
At the fall CFS Advisory Committee meeting, PANDORA's Lori Chapo-Kroger spoke on behalf of the Coalition 4 ME/CFS, telling them the current status of the proposal to correct the misclassification of CFS in the ICD-9-CM, a diagnostic code manual used in the U.S.  
Lori Fall CFSAC ICD-10-CM 
Go to 21:58 into the video.

The CFSAC renewed their support for the Coalition 4 ME/CFS proposal. They also made other recommendations, including that a meeting be convened where ME/CFS experts come to a consensus on a clinical criteria. The CFSAC made quite a few specific recommendations that would apply to the NIH, including that a specific call for research applications for biomarker discovery and validation be put out.  
PANDORA Sends Letter to AAFP 
PANDORA and others have been urging the CDC to take down their CFS Physician Toolkit from their website. The CFS Advisory Committee has also recommended that the CDC toolkit be removed.

While the CDC has made some improvements to their website information, they are refusing to take down the toolkit until they make a new one in 2013. In the meantime, the poorly written information is creating harm, as evidenced by a recent illness
overview posting on the American Family Physician Journal website.

You can see the well-reasoned and evidence-based letter PANDORA sent to the editor here.  
PANDORA to Educate Biology Students at Calvin College  
Calvin Service On Nov. 13, PANDORA president Lori Chapo-Kroger will spend one hour instructing Calvin College biology students about the biology of ME/CFS. After that, the students will form interview questions that they will be asking patients.

During Nov. 19-23, these students will spend an hour and a half of service at the homes of the patients. This could be yard work, clean up and more. They will also take some time to learn about the disease directly from the patients.  
Truck Used in
Lyme Disease Demonstration  
A group of Lyme disease patients found an innovative way to get their message across to infectious disease doctors in Sand Diego. A truck carried a large sign so that they did not violate any regulations as it traveled around the convention center where the doctors were meeting. See some photos and a description of the event here.  
Telephone Memorial
for Rich Van Konynenburg 
Rich Van Konynenburg Many are still mourning the death of a long-time advocate and researcher into the methylation cycle and its bearing on NEIDs.

On Nov. 18, a phone memorial service will be held. Dr. Neil Nathan and Dr. Derek Enlander are expected to be part of the phone service.
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In This Issue
FDA Wants Your Comments
Vote Daily for Gas Cards
PANDORA Presentation at CFSAC
PANDORA Press Release
2012 Advocacy Raffle
Coalition Proposal Explained
PANDORA Letter to Correct Information from AAFP
PANDORA Educating Biology Students
Lyme Diseas Demonstration
Van Konynenburg Memorial
Medicare Expands Home Health Care Services
for Chronically Ill
A New York Times article reports that Medicare will cover home health care services, even if that care will not improve the patient's condition.
Lyme Research News
Stricker and Johnson analyze persistent bacteria and bacteria debris theories.

Check out our website! 

Pandora new website

ME/CFS Research News
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All it Takes is a Signature

We know that many people want to make a difference and don't know how, given the limitations of their circumstances. A simple way is by signing a petition:

Gulf War
Illness in the News 
The Dept. of Veterans Affairs has extended the period in which disability symptoms for medically unexplained conditions must be present in order to be approved for disability due to Gulf War service.
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Research News

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Canadians in Second Round for Medical Equipment
Kati Debalic entered the Vancouver Complex Chronic Disease Clinic in the Aviva contest for medical equipment. The clinic will be for research and care for people with ME/CFS, fibromyalgia and Lyme disease. In a nail-biter, they thought they were eliminated, but then they received news that they made it to the second round of voting.

To be kept up to date on when the next round of voting starts, please join the Facebook
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

Click here to e-mail us
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