Much Accomplished in
NEIDs Awareness Month 2013
June 2013

PANDORA Org-initiated  

CME Course Instructs 45  

Alabama Doctors on ME/CFS 

Alabama doctors CME course
Our efforts with St. Vincent's Health System in Central Alabama have produced results. Dr. Anthony Komaroff, an internationally known ME/CFS expert from Harvard Medical School, provided one hour of instruction that showed ME/CFS is not depression, is commonly triggered or perpetuated by infections and has many objective biological abnormalities.

Our president, Lori Chapo-Kroger traveled from Michigan to Alabama to be the patient example. We will be posting a video of the course within the next couple of weeks. 
All 69 students, which also included nurses and other medical professionals, received the International Association of CFS/ME Physician Primer that gave them more information on treatments.

We were pleased to see that two of the doctors said they wanted to be kept up to date on the research, which we will be sending them.

St. Vincent's is also planning a CME course on tick-borne illnesses and one on fibromyalgia. 

Thank You for Your Donations 

This spring, we had two fundraisers. Ruth Walkotten

In the Hope for a Cure fundraiser, $915 was raised so that Dr. Ruth Walkotten was able to attend the FDA ME/CFS Drug Development Workshop. She reports making some new connections and now is interested in having her patients participate in research. 

In the Flowers fundraiser, $224 was raised. This was far less than our goal. We  will have another flowers fundraiser in the fall and hope to raise more then.

We want to thank you for your help. Please consider donating so we can continue working to improve patient quality of life.
More News Media Coverage
Increases  Awareness in May

Our president, Lori Chapo-Kroger, was interviewed twice in May to discuss neuro-endocrine-immune diseases and PANDORA Org's efforts.

Alabama Legislature
and two Cities Recognize
Unmet Needs of NEIDs Patients

Alabama state seal
Thanks to the assistance of Sen. Slade Blackwell, Rep. Allen Treadaway and Policy Advisor Michael Ciamarra, a resolution passed the Alabama legislature saying an NEI Center should be created in the state and more medical professionals should be educated on neuro-endocrine-immune diseases.

Gov. Robert Bentley signed the resolution on May 2. A ceremonial signing is scheduled for June 10. The next step is for us to meet with the state health officer, medical school deans and state medical professional organizations. Check out the other progress we're making in that state.

Also, check out the videos of our president, Lori Chapo-Kroger, as she tells the Clay, Alabama city council and Wyoming, Michigan city council why May is NEIDs awareness month and what they can do to help. 

Reminder: Comments to FDA  

about ME/CFS Open until Aug. 2   

The April FDA ME/CFS Drug Development Workshop included patients. Some of the FDA officials said the patient comments gave them a better understanding of the illness, which will hopefully help them guide drug companies to designing effective clinical trials.

You have until August 2 to give your comment to the FDA. For some tips, please review this webinar we gave in April. The comments should be submitted to Regulations.gov with document ID FDA-2012-N-0962.

This meeting was a result of the grassroots pressure from our organization and people like Robert Miller. Also, Pat LaRosa and Billie Moore with the New Jersey CFS Association helped make the meeting happen. For years, our organization has participated in and taken the lead in collaboration for effective advocacy. 
Our Medical Advisor
Speaking at Conferences
Andy Kogelnik Dr. Andy Kogelnik is scheduled to speak on Friday at the October International Lyme and Associated Diseases Society Conference. His topic is "Clinical Research Networks, A New Paradigm for Infectious Disease."

In May, Dr. Kogelnik spoke at the Invest in ME Conference in England. He spoke about how technology is changing health care research, health care communication and health care monitoring. 

Time to sign up for research: The Open Medicine Institute is now moving forward in a bold plan to change the ME/CFS research landscape. This starts with a database of patients and healthy controls. We encourage all who fit the criteria to sign up.

Learn more about the OMI research in this video.  
Attracting Clinicians
to NEIDs Field is a Priority
Our work in Alabama has revealed that creating an NEI Center requires finding a clinician with a passion for NEIDs. However, the current U.S. insurance reimbursement system rewards doctors who can exam, diagnose and treat patients in as little as 8 minutes. Thus, for financial reasons, most clinicians don't want many NEIDs patients.

This spring's Chronic Fatigue Syndrome Advisory Committee meeting included the topic of attracting clinicians to the field. We made a public comment by phone of what clinicians are telling us as to why they avoid NEIDs patients, including fibromyalgia, ME/CFS and chronic Lyme disease patients.

CFSAC chairman Dr. Gailen Marshall said for our organization to "be prepared" to help them with their effort, which includes a work group focused on the issue. 
Citgo Cards Giveaway Continuing
Citgo Fueling Good
We are now collecting names for the fourth drawing for the Citgo fuel cards through Facebook.

In addition to using the cards to defray some advocacy costs, we have given three $100 fuel card to three individuals.

The winners so far are:
  • Cindy Burdick
  • Liza Hook
  • Donna Nowak Robillard
ICD-10-CM Issue not Dead
The National Center for Health Statistics has not made a decision on how to classify chronic fatigue syndrome in the next edition of the clinical diagnostic manual used in the U.S. After two proposals in two years and speaking at NCHS committee meetings, we learned that they will likely make a decision this month.

The U.S. clinical code manual must harmonize with the World Health Organization diagnostic code manual. So, along with others, we sent a letter to the WHO letting them know of the issue and our concern that the U.S. follow WHO guidelines. 
Focusing on Rotary Clubs for Awareness
We have prepared a PowerPoint presentation that has been given to threeRotary Clubs. The presentation is called "The Other Polio" and shows that ME/CFS used to be called "atypical polio." We also include fibromyalgia and Lyme disease as overlapping or similar diseases. 

The Rotary Clubs are a good place for awareness because they are a community service club. Internationally, they focus on eliminating polio, but paralytic polio has been eradicated from the U.S.

Also, they commonly have weekly meetings and are looking for speakers. Many Rotary Clubs include politicians and business leaders as members. If you would like to learn more so you can give this presentation to your local Rotary Club, we invite you to let us know that you want to be a PANDORA Org ambassador.  
Raffle Canceled 
Due to circumstances beyond our control, we cannot guarantee the stay at a resort in Orlando will be available to a winner of a raffle advertised by the Florida P.A.N.D.O.R.A. organization and the new PANDORA Org. Therefore, we are canceling the raffle.

All those who purchased a raffle ticket after Sept. 1, when the new PANDORA Org in Michigan was formed, have been contacted and given the opportunity to turn their raffle purchase into a donation or receive a refund.

Anyone who purchased a raffle ticket prior to Sept. 1 from the P.A.N.D.O.R.A., Inc. Florida organization should contact Marly Silverman at 954-629-0976 or email her.
Support Card for Patient Advocate  
Eileen Holderman is a PANDORA Org nominee that now sits on the Chronic Fatigue Syndrome Advisory Committee. Eileen has been bold and persistent in advocating for patients' interests.

However, the most recent meeting revealed a conflict with another committee member and government officials with disturbing claims that now involve attorneys. This has caused unusual pressure and stress in her trying to carry out her service to us patients.

We all know what stress does to those with neuro-endocrine-immune diseases. Please sign this card showing you appreciate her personal sacrifice. 
PANDORA Org's Misson 

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.   

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In This Issue
Thanks for the Donations
News Media Coverage in May
Governmental Bodies Recognize NEIDs
FDA Still Accepting Comments
Kogelnik Speaking at Conferences
Attracting Clinicians to the Field
Gas Cards Winners
Still Advocating for Correct Coding
Rotary Clubs are Ripe for Awareness of NEIDs
Raffle Canceled
Give your Support to Determined Patient Advocate
Fatigue Is Not an Disease Petition 
We encourage you to sign this petition that says "CFS" name must go and that the best diagnostic criteria for the disease is the Canadian Concensus Criteria, as has been recommended by the Chronic Fatigue Syndrome Advisory Committee.
Spiders Now Suspected as Bartonella Vectors
A family's experience with a woodlouse spider infestation and later positive tests for Bartonella infection has led North Carolina University investigators to suspect the spiders are vectors for the infection.
Norwegians Discover Test to See Borrelia in Blood Cells  
Treating the blood cells so they are sharper under microscopes is the technique researchers say are producing a more reliable test for Borrelia infection. Also, researchers say the bacteria is not always spiral in shape. 
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Advice on Increasing Blood Volume  
Health Rising collects suggestions from experts on how to increase blood volume for ME/CFS and fibromyalgia patients.
Another Lawsuit against U.S. Chemical Company 
A lawsuit filed in March implicates a U.S. company as being a source of the agent used in mustard gas weapons that Iraq used.

The suit is attempting to recover damages for Gulf War illness. The trial was scheduled for this month but has now been postponed.
Infection and Resulting Inflammation Connected to Memory Problems
A study in New York looked at levels of infectious agents and memory recall. The results lead to the theory that chronic higher inflammation may be causing memory problems.

While this theory has long been popular for ME/CFS, some researchers now think that Alzheimer's and fibromyalgia patients may have Herpes Simplex Virus one infection and inflammation causing some symptoms. 
NIH Pain
Consortium Videos Now Available
The NIH Pain Consortium Symposium videos are now available. Day 1 focused on a review of the research. Day 2 included a presentation on the challenges of chronic pain and opioids medication.
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VA Sets up Biorepository for Gulf War Illness Research  
The VA wants Gulf War illness patients' tissue and other Gulf War veterans' tissue for research. This collection is for postmortem. 
Great Nonprofits Wants to Hear from You about our Organization   
In 2012, Great Nonprofits recognized our organization by giving us "Top-Rated" status.

We need you to give us a positive review again if we are to keep that status in 2013.

This designation helps us in getting grants so we can do more work for you.
Blood Test for Fibromyalgia?
A biomarker is needed for all neuro-endocrine-immune diseases to improve early diagnosis and better research cohorts.

Researchers at Ohio State University say they have a blood test that can distinguish fibromyalgia patients from those with rheumatoid arthritis and osteoarthritis.
New ME/CFS Medscape
CME Course

In the latest Medscape ME/CFS course for physicians, patient examples are used to show how to properly diagnose patients.
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Some Fibromyalgia Patients Benefit by Switching Drugs
According to a study from Dr. Lucinda Bateman's clinic in Utah, fibromyalgia patients who are not seeing results with Cymbalta may do better on Savella.
Large Percentage of ME/CFS Patients Have Autoimmunity against Seratonin 
Researchers from many different countries found over 60% of ME/CFS patient have antibodies against 5-HT, also known as seratonin. This is higher than what was found in chronic fatigue patients and healthy controls.
Researcher's YouTube Videos
Give much Detail about ME/CFS

Dr. Kenny DeMeirleir, who has been an author of about 80 published papers on ME/CFS, has answered lots of detailed questions about the disease in recent videos.
CFIDS Association Ready to Start Clinical Trials
In a press release, the CFIDS Association announced that they have identified some drugs for possible repurposing as treatments for ME/CFS.
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