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A Look Back and a Look Ahead
Newsletter
January 2013

CFS Solutions Wins $5,000 in Gas Cards for Advocacy and Assistance

City Award 2013
Jason Berris, VP of American Gas & Oil City Station; Devin Corn, Sr. Territory Sales Manager for Citgo and BP in Michigan; Lori Chapo-Kroger, PANDORA President; Luan Sovereign, CFS Solutions member; Teresa Dutmer, PANDORA Treasurer. Ellen Edlestein, a CFS Solutions healthy volunteer, took the photo.  
Thanks to Citgo's Fueling for Good and the many patient votes, PANDORA's CFS Solutions won $5,000 worth of gas cards to be used in advocacy, education and patient assistance efforts. The total number of miles this represents is 27,778.

Some planned uses of these cards:
  • Travel costs of volunteers who visit shut-ins and take them on outings.
  • Travel costs of newly diagnosed patients to come to the West Michigan education and support meetings.  
  • Travel costs, especially to doctors, of patients who have lost their jobs due to the illness debilitation and have not yet been approved for disability. 
  • Travel costs for local and national advocacy projects.   

We will be making an announcement soon with details on how patients in financial need can apply for these cards. Thank you for your votes.

 

Your votes also helped us win $1,000 from Mercantile Bank. Remember, you have the power to continue the NEIDs advocacy and education.  

PANDORA Honored as a Top-Rated 2012 Great Nonprofit
We are honored and humbled that PANDORA has been selected as one of the Top-Rated 2012 Great Nonprofits, which is shown by the star in our profile. According to the organization, only 1% of those eligible are chosen for this recognition. As always, this increases awareness of the work we do in advocating for and serving those with neuro-endocrine-immune disease. Thank you for the positive comments that helped make this happen. 
PANDORA's FDA Advocacy Continues
December 20, 2012 provided a special opportunity for patients to tell FDA officials and the Arthritis Advisory Committee about ME/CFS and its impact. In a vote of 8 to 5, the committee recommended to not approve Ampligen for all who are diagnosed with CFS. Most members, including some who voted against approval for the whole patient population, said they believe it is effective in a subgroup. In a vote of 8 to 5, the committee said Ampligen is safe enough for approval, considering the severity of the illness and the unmet medical need.

We want to especially thank Michael Walzer, Dr. Michelle Backus-Walzer, Laurel Wright-Feighery, David Marshall, Cheryl Marshall and Matina Nicholson, who were part of PANDORA's team that participated in the Advocates Extraordinaire(TM) webinar and / or gave public comment. The FDA was "overwhelmed" with about 750 patient comments. Look at PANDORA's presentation here. An audio recording of the meeting is available, but the sound quality is very poor.

Even though the vote did not go the way we wanted, we feel the effort did produce good results. See a review here.

The FDA will consider the recommendation and make a decision anytime up to February 2. PANDORA has written a letter to FDA officials asking them to find a way to approve the drug for those who will likely benefit from it. Feel free to write your own letter using some of the same wording. You can sent it to Dr. Janet Woodcock, Director of the Center for Drug Evaluation and Research, at janet.woodcock@fda.hhs.gov.

Robert Miller has also started a patient email action, and a petition has been set up. 

We are also looking forward to a scientific workshop on ME/CFS sponsored by the FDA. This meeting will be sometime this spring and will be open to the public. We expect this workshop will produce a list of factors that can be measured in ME/CFS to determine drug efficacy. 

The Toilet Paper Reason for Patient Advocacy  

Nita Thatcher 2013
What do toilet paper and patient advocacy have in common? In a humorous story, Nita Thatcher tells why a childhood experience with toilet paper set her on the course of a lifetime of standing up to injustice, even now that she struggles with a chronic illness. 

We found her story encouraging and hope you will too.  

CDC Gives Update on ME/CFS Study   

When Dr. Elizabeth Unger was appointed to lead the Centers for Disease Control CFS program, PANDORA sent a letter with a list of actions we hoped to see from the health agency. You can see the list here. She has already started or completed many of these action items.

One of the most important requests on that list was for the CDC to work with ME/CFS-experienced clinicians. The CDC is now doing that through a research project that includes Dr. Nancy Klimas, Dr. Andy Kogelnik, Dr. Ben Natelson, Dr. Charles Lapp, Dr. Lucinda Bateman, Dr. Dan Peterson and Dr. Richard Podell.
CDC CFSAC PowerPoint 10-2013
A slide from the October CDC presentation to the CFS Advisory Committee 

They have a webpage with information about the study. In a January 14 patient phone conference, Unger reported on the progress of this study:
  • 96% of patients have been enrolled. Pediatric cases are included. 
  • Study will collect patient illness features, patient history and family history.
  • Goal is to come up with a better case definition and subgroups, hopefully revealing the biological features.
  • Phase I is expected to be finished in June 2013.
  • Validation and quality control will take another six months after June.
  • Phase II will include blood collection, cognitive tests and exercise tests. It will start in March or April 2013.
Additionally, the CDC is working on educating physicians on what is known about ME/CFS now. A new Medscape physician course with Dr. Anthony Komaroff, Dr. Lisa Corbin, Dr. Ben Natelson and Dr. Peter Rowe will be a discussion of case examples of ME/CFS. This is expected to be taped at the end of January and be available in March.

They are also working to get more medical school education through a simulation of a doctor who does not believe the ME/CFS patient and one who does. This will be through MedEdPortal. They expect this will be available in June 2013.

You can learn more about current CDC efforts here. PANDORA will be sending a letter to Unger to ask that attention be given to other important problems, such as a better name for the disease.

As part of the January phone conference, Dr. Nancy Klimas explained that body activity in the aerobic energy mode, while including pacing, can improve the dysautonomia ME/CFS patients experience. The key was to know the heart rate threshold so you don't go into anaerobic energy mode. You can see an explanation of this in Dan Moricoli's video.   
NEI Center Progress in Alabama  
In getting rNEi Center small logoeady for the 2013 activities in Alabama, a website has been set up to help connect patients and others who are interested in neuro-endocrine-immune diseases in that state. The website includes some of the results from a patient survey done in 2012. You can also see the progress made so far. In February, we expect the proposed resolution to be made public. If you know someone in Alabama with an NEI disease, please have them contact us
PANDORA Teaches Students at Calvin College about ME/CFS 
 
The gene expression study slide in the presentation given to the students. 
On November 13, PANDORA President Lori Chapo-Kroger spent an hour instructing Calvin College biology students about the biology of ME/CFS. After that, the students asked questions and a few said they know someone with the disease.

The instructor said the presentation, which included the gene expression dysfunction, went right along with the topic they are learning. He said he wanted the students to see how cell function or dysfunction has real life impacts. He also said he will be asking us back again.

The following week, the students spent some time with patients in their home, doing some needed chores and interviewing them. You can read how much encouragement Luan Sovereign received by the students' visit and assistance. By educating these prospective doctors and nurses early, we are getting to them before they hear the misinformation.  
Collecting Computer Equipment for Patients
Isolation is a constant struggle for people who have NEIDs. After the gift-giving season, many may have computer equipment they no longer need. Donating it to patients so they can "stay connected" will make a big difference.

Specifically, the following are needed as they can be used by those who are largely bed bound: laptops, notebooks, tablets, smartphones and e-readers.

If you live in the continental United States and have or know of someone who has any of these items and would be willing to donate them, please contact Michele Krisko. She will see that the donations are placed with those who truly need them. A tax deductible receipt can be given if one is desired. Email her at mariemicheles@gmail.com.

CFS Solutions Welcomes Koerner Gray Buchta after his Loooongggg Walk 

ME/CFS patient and Michigan resident Koerner Gray Buchta walked across Michigan to raise awareness and research funds for ME/CFS. CFS Solutions was there to celebrate his accomplishment when he finally arrived at his destination. According to his website, he received $4,470 in donations that will be given to the CFIDS Association of America. He was also interviewed by the news media.

One might wonder how someone with ME/CFS could do this. The answer is obvious: very slowly. Read his blog and see his pictures on his website.
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In This Issue
$5,000 in Gas Cards
PANDORA Is Top-Rated Nonprofit
FDA Advocacy Continues
Nita Thatcher Tells a Childhood Story
CDC Update on ME/CFS Research and Education
NEI Center Progress in Alabama
PANDORA Educating Biology Students Students
Donate Your Old Computers
Koerner Walks Across Michigan
Free Lyme  
Disease Book
Hurry, Bryan Rosner's "Top 10 Lyme Disease Treatments" is free to Kindle users.
Multiple Chemical Sensitivities 
in Pictures 
Sometimes a photo for advocacy is worth 1,000 words. Danish photographer Thilde Jensen reveals the impact of MCS with poignant photos.
Fibromyalgia Association with Other Diseases 
Research out of Spain is indicating that fibromyalgia occurs more in lupus patients than those with Sjorgen's.
Much ME/CFS Research Results Expected in 2013 
Cort Johnson takes a look ahead at some of the exciting research expected to be published this year.
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NIH State of Knowledge Workshop Released 
The long-awaited ME/CFS National Institutes of Health 2011 workshop report has been released. The executive summary reveals more recognition to the viral connection to the disease.
NOVA Southeast University Hosting Patient Conference for Gulf War illness and ME/CFS Patients 
 It has been dubbed the "coming out party" for Dr. Nancy Klimas with her new Institute for Neuro-immune Medicine. Take a look at the line up of speakers for the January 26 event.
Men with Fibromyalgia Walk Different
So says a study from Spain. The differences are speed, stride length and rate of steps. 
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IACFS/ME Primer Now on AHRQ Guideline Clearing House
The physician primer for ME/CFS, produced by the International Association for ME/CFS, is now up for distribution and review on a U.S. government website.
Researchers Say GWI May be
Immune Response
to Latent Viruses

North Carolina researchers theorize that immune system response to latent viruses cause what they call chronic multi-symptom illness. This was from studies with Gulf War veterans.
Lyme Political Advocate Continues his Work in Congress
Sen. Terry Gipson, from New York, took his oath of office, which ensures that Lyme patients will still have a staunch supporter of more Lyme research funding in the federal government.
Doctor Notes Major Problem with DSM-5
Dr. Allen Francis, who chaired the Task Force for the Diagnostic and Symptom Manual for Mental Disorders version 4, joins with PANDORA and others in saying the somatic symptom disorder new diagnosis and criteria in the DSM-5 will lead to people with a biological illness being misdiagnosed. This could have a negative impact on people with multiple chemical sensitivities, chronic Lyme disease, fibromyalgia, Gulf War illnesses and ME/CFS.
WATCH US
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Review of Last Year's ME/CFS Research
Cort Johnson takes a look back at 2012 ME/CFS research.
Law Requires
Registry of Veterans Who Worked
Around Burn Pits

NBC News reports that a new law requires the federal government to register veterans who may have become sick or died from working around burn pits in Afghanistan and Iraq.
ME/CFS Treatmet Guide for Free
The second edition of "Chronic Fatigue Syndrome: A Treatment Guide," will be offered for free on January 19 and 20.
Immune System Abnormalities Could Help with Fibromyalgia Diagnosis
Research out of Chicago shows an impaired immune system is seen in people with fibromyalgia.
CDC Brings Attention to Pediatric ME/CFS
Along with future plans, the CDC already wrote an article that appeared on Medscape about pediatric ME/CFS. A particular effort is being made to reach school nurses.
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.

Phone: 231-360-6830

 Click here to e-mail us
 
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