Lots of Spring 2013 Advocacy, Awareness, Education and Assistance
March 2013

Flowers Helping Patients  

Imagine your garden or porch blooming with color, and butterflies are fluttering about. Now imagine that while enjoying your flowers, you also have the satisfaction of knowing your purchase of those flowers helped people with disabling chronic illnesses. 
Our organization will receive 50% of the flowers sold through our page on Flower Power. We will use this money to advocate for debilitated patients, for awareness and for direct patient assistance.

News Coverage Increases Awareness 

In a sudden 2-week burst in March, we were contacted to be sources for news stories. This news coverage helps to change the misconceptions the public has of neuro-endocrine-immune diseases. It's free advertisement. As always, we encourage you to leave comments online for these news stories when the option is available to encourage more news coverage on the topic.

ABC News logo png New Psych Disorder Could Label Sick as Mentally Ill - ABC News interviewed our president Lori Chapo-Kroger as  to how the  new  somatic symptom disorder will negatively affect those with complex illnesses. Remember, our organization submitted comments, including one in June  2012, discouraging the criteria for this new disorder.  
Fox 17 logo
CFS Affects Thousands in our West MI; What is it? - Fox 17 TV News interviewed our president Lori Chapo-Kroger and Laura DeDecker. We want to acknowledge Laura's success in that she contacted the station to do a story on ME/CFS after they did a story on another disease.

WGVU logo
PANDORA Advocates for Better Heath - WGVU public radio interviewed our president Lori Chapo-Kroger concerning neuro-endocrine-immune diseases and PANDORA's activities. This came about from Lori attending chamber of commerce meetings and talking to someone who referred her to this host. 
Help Us Send an Expert to the
FDA Drug Development Workshop

We have been told the April 25-26 ME/CFS Drug Development Workshop is the first the Food and Drug Administration has sponsored for a disease since HIV/AIDS. Let's make it the best it can be. This came about as a result of PANDORA's and other patient advocacy calling for a stakeholders meeting.

Our organization sent a letter asking the FDA to invite some noted experts and make sure the attendees have a good understanding of what ME/CFS is and is not. We are currently inviting others. The agenda has now been posted.
 Ruth Walkotten
To make sure more ME/CFS experts are  there, we are asking for some help in covering Dr. Ruth Walkotten's travel costs. She is one of our board of directors and has years of experience in treating ME/CFS patients. Take a look at our Rocket the Hub page, which also raises awareness of the disease. 
St. Vincent's in Alabama
Announces CME Course on ME/CFS

Since spring 2012, we have been working to improve access to knowledgeable healthcare for Alabama neuro-endocrine-immune disease patients. After some meetings with state politicians and St. Vincent's Health System administrators, and a patient survey in late summer of 2012, we are pleased to announce success. 
 St. Vincent's Logo 
CME Courses: St. Vincent's is hosting a series of continuing medical education courses on NEIDs for their physicians and nurses. They chose Dr. Anthony Komaroff to give the first one on May 7 about ME/CFS. They have printed a flier that tells what he will discuss. We are very pleased with the information St. Vincent's included in this flier. It's as if an ME/CFS expert or ME/CFS patient wrote it.  
St. Vincent's is a 5-hospital system in central Alabama. The course will be given at St. Vincent's East, but the other four hospitals will be tied in electronically. They are also advertising this to clinicians affiliated with their system.

Two bonuses:
St. Vincent's has allowed us to distribute the International Association of CFS/ME Physician Primer to all the clinicians who will be attending the course. Also, they will make a recording of the 1-hour course that we can show you afterward.

Check out the Alabama NEIDs website to see more of what we are doing in the "Heart of Dixie."  

We're Advocating  

So You Aren't Invisible  

Last week, we sent an email to FDA officials overseeing the April 25-26 ME/CFS Drug Development Workshop, urging them to provide the means for the severely ill patients to participate, not just listen. We are concerned that some drug company representatives and other researchers may attend and see only the moderate to mild cases of patients who are able to physically be present.

ME/CFS already is misunderstood by the medical profession, and those attending will believe what they see. We want them to see how devastating the disease can be. After sending the email, the FDA posted a FAQ document that says they will not provide a means for the severely ill to submit video comments. We are discussing with other advocates what further action would be most successful.  

Still Time to Submit  

Comments on Opioids Labeling 

man in pain
In two email announcements, we told you that the FDA is considering putting more restrictions on the opioids labeling. We are very concerned about the negative impact this will have on responsible patients who suffer from chronic pain, and we submitted a comment saying so.

We encourage you to comment also. Copy and go to this url address: http://www.regulations.gov/#!submitComment;D=FDA-2012-N-1172-0001 Don't forget to also send us an email letting us know you submitted a comment.

April 8 is the deadline for comments.  

Dr. Andy Kogelnik is  

PANDORA's New Medical Advisor  

Andy Kogelnik
We want to thank Dr. Andy Kogelnik for accepting our invitation to be PANDORA's medical advisor. We will soon be updating this on our website.

Dr. Kogelnik is aggressively searching for a cure for neuro-endocrine-immune diseases through the Open Medicine Institute.

His experience is in both ME/CFS and Lyme disease, which also makes him experienced in fibromyalgia and the chemical sensitivities that often come with these diseases.

He spoke at the 2010 International Lyme and Associated Disease conference and is contracted with the CDC in research to develop a new diagnostic criteria for ME/CFS.

Welcome aboard Dr. Kogelnik! 
Citgo Cards Giveaway Coming Soon
Citgo Fueling Good
A few months ago, your votes won Citgo fuel cards for our organization. Now that the cards have arrived, we will be giving patients direct assistance by having a random drawing for some of these cards.

The first drawing will be in April through our Facebook page. Patients who live in one of the states with Citgo stations and have a Facebook page are eligible. Watch our Facebook page for an announcement.   
Instructions on FDA Workshop Commenting and Attendance
Due to ours and others' advocacy, the FDA is hosting an ME/CFS workshop. See Jennie Spotila's explanation on how to attend by phone or webinar and give comments. She also has a list of the links to all the information you need for the April 25-26 ME/CFS Drug Development Workshop.

The CFIDS Association of America is hosting a series of webinars on the drug development process.  
The Truth Comes Out about
Veterans Affairs and Gulf War Illness  
Some may find this news unsurprising. A man has come forward as a whistleblower saying the Department of Veterans Affairs covered up the truth about Gulf War illness being a physiological disease connected to toxic exposure.

In this Daily Beast article, researcher Steven Coughlin said the VA held on to the outdated theory that Gulf War illness is a psychological illness, despite conclusive evidence that it is a neurological illness.  

The March Congressional hearing that discusses this issue is now available online. And National Public Radio "Talk of the Nation" discussed the news and Gulf War illness in general.

We also note that some on the hearing panel are now calling the the condition "chronic multi-symptom illness" and one called it "chronic multi-system illness."

The Daily Beast reports sick Gulf War illness veterans are suing chemical companies.
National ME/FM Action
Network Needs your Vote   
Share the Bounty logo
Our Canadian comrades are competing for thousands of dollars in the Share the Bounty online voting contest. When you go to the website, you must choose the letter "N." Then you will see the National ME/FM Action Network listed where you can cast your vote.

This is a daily voting contest until March 29, and the organization has struggled between third and fourth place, putting at risk whether they will receive any money. Joining this Facebook page will give you daily reminders or join this daily reminder email group.

Remember, this is one area where bedridden patients can make a difference with just a few mouse clicks.  
DSM-5 Criticism Builds  
The diagnostic manual for psychiatrists, DSM-5, is expected to be published this spring. In addition to our letter, DSM-IV Task Force Chairman Allen Frances and Suzy Chapman have been very public about their criticism. They have written about the new somatic symptom disorder that is likely to lead to more neuro-endocrine-immune patients being given a mental illness diagnosis. Allen's position appeared in the BMJ.

Also, some psychiatrists and other professionals have organized to expose the mistakes in the DSM-5. 
NEIDs Patients Overwhelm
Future British Columbia Clinic   
Allison Bested
A clinic for neuro-endocrine-immune diseases will be opening soon in British Columbia. Dr. Alison Bested is the medical director.

Within two weeks of starting their waiting list, they have received over 500 phone calls from patients.

This shows how much such centers are needed. We will continue to work toward creating a center like this in the United States. 
PANDORA'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 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
News Coverage in March
Help Us Send an Expert to FDA
PANDORA Arranges for CME Courses in Alabama
Submit Comments on Opioids Labeling
New Medical Advisor
Gas Cards to be Given to Patients
Gulf War Illness and the VA, Truth Comes Out
Vote for National ME/CFS Action Network
DSM-5 Criterism Builds
Patients Overwhelm New British Columbia Clinic
FDA Wants to Know about ME/CFS 
Dr. Lily Chu and Prof. Lenny Jason are working with the FDA to find out more about ME/CFS treatments and disease impact. We encourage all ME/CFS patients take this survey. 
Also, the CFIDS Association of America is sponsoring a patient survey. They will also submit results to the FDA. 
Free Lyme
Disease Info
The CDC has some documents that you can order for free about Lyme disease.
Journal of
Fatigue on PubMed 
The International Association of CFS/ME Journal of Fatigue is now searchable on PubMed.

This will greatly increase exposure to the studies and raise the profile of the journal.   
Rare Disease Report Includes ME/CFS  
Charlotte Von Salis explains ME/CFS on this video on Rare Disease Report, creating more awareness. 
Labwork Does not Have to Be Expensive
This lab is offering blood work at much lower prices. Check it out.
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Virginia Doctors Must Tell Patients Lyme Tests are Unreliable  
Thanks to patient advocacy and the governor's task force, Virginia doctors must now tell patients that Lyme tests are not reliable.
Many of
Today's Soldiers
Are also Sick

USA Today reports that some of the soldiers who served in Iraq and Afghanistan are also developing chronic multi-system illness.
MRI Study Brings Hope of Gulf War Illness Biomarker
Dr. James Baranuik, who researches both Gulf War illness and ME/CFS, has discovered brain white matter damage in GWI patients.
Small Nerve
Fibers  Abnormal
in Fibromyalgia Patients

A study from Germany shows fibromyalgia patients have abnormal small fiber nerves  compared to depression patients and healthy people.
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Men and Women
are Treated and Respond Differently

A New York Times commentary explores how women respond differently to drugs and that doctors treat their pain differently.
B Cell Differences in ME/CFS Patients
Prompted by the results that some patients improve with Rituximab, some researchers  have found ME/CFS patients have abnormally higher levels of naive B cells, that is cells not yet exposed to an antigen.
Study Confirms CoQ10 Improves Fibromyalgia Symptoms
A study from Spain confirms that Coenzyme Q10 reduces pain and other fibromyalgia symptoms.
CFSAC Meeting Scheduled
The spring Chronic Fatigue Syndrome Advisory Committee meeting is scheduled for May 22-23. Additionally, they have released a report on the interagency ad hoc group meetings.
NIH-Funded Study to Look at Glutathione in ME/CFS
$2 million has been granted to research brain glutathione levels as a possible biomarker of ME/CFS.
Study Looking at Combining Treatments for Fibromyalgia

The University of Washington is conducting a study to see what combination of medication and non-medicinal treatments are most effective for fibromyalgia.
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Klimas' Clinic / Research Center Now Accepting Patients
The Institute for Neuro-immune Medicine is receiving news media attention for helping Gulf War illness and ME/CFS patients.
A-1 Antitrypsin Improves ME/CFS
In a single case report, clinicians from Spain report that ME/CFS symptoms improve from alpha-1 antitrypsin infusions. This is an anti-inflammatory derived from plasma.
Lyme Disease Commission Report

The recently released Massachusetts Lyme Disease Commission report says mandatory insurance coverage for Lyme disease treatments should be enacted.
Adjusting Gut Microbes Can Bring Long-term ME/CFS Improvement
Some Australians have determined that 70% of ME/CFS have short-term improvements and 58% have long-term improvements after bacteriotherapy.
Fatigue in Multiple Sclerosis Leads to Misdiagnosis
Researchers at the University of Kentucky found 28% of MS patients had previously been diagnosed with chronic fatigue syndrome, due to fatigue being an early symptom of their disease.
Tick-borne Disease Alliance Holds Forum
In March, the Tick-borne Disease Alliance held a forum that included politicians, researchers and clinicians to discuss Lyme disease. They had both a researcher who believes in long-term antibiotic therapy / chronic infection and one who does not, giving both sides of the issue.
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