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Flowers Helping Patients
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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.
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News Coverage Increases Awareness
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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.
 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.
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.
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.
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Help Us Send an Expert to the
FDA Drug Development Workshop
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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.  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.
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St. Vincent's in Alabama
Announces CME Course on ME/CFS
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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.
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.
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We're Advocating
So You Aren't Invisible
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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.
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Still Time to Submit
Comments on Opioids Labeling
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 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.
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Dr. Andy Kogelnik is
PANDORA's New Medical Advisor
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 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. Welcome aboard Dr. Kogelnik!
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| Citgo Cards Giveaway Coming Soon |
 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.
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Instructions on FDA Workshop Commenting and Attendance
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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.
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The Truth Comes Out about
Veterans Affairs and Gulf War Illness
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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.
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."
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National ME/FM Action
Network Needs your Vote
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 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.
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DSM-5 Criticism Builds
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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.
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NEIDs Patients Overwhelm
Future British Columbia Clinic
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 A clinic for neuro-endocrine-immune diseases will be opening soon in British Columbia. Dr. Alison Bested is the medical director.
This shows how much such centers are needed. We will continue to work toward creating a center like this in the United States.
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PANDORA's Misson
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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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FDA Wants to Know about ME/CFS
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Free Lyme
Disease Info
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The CDC has some documents that you can order for free about Lyme disease.
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Journal of
Fatigue on PubMed
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Rare Disease Report Includes ME/CFS
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Charlotte Von Salis explains ME/CFS on this video on Rare Disease Report, creating more awareness.
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Labwork Does not Have to Be Expensive
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This lab is offering blood work at much lower prices. Check it out. |
JOIN US
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Virginia Doctors Must Tell Patients Lyme Tests are Unreliable
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Many of
Today's Soldiers
Are also Sick
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USA Today reports that some of the soldiers who served in Iraq and Afghanistan are also developing chronic multi-system illness.
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MRI Study Brings Hope of Gulf War Illness Biomarker
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Small Nerve
Fibers Abnormal
in Fibromyalgia Patients
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A study from Germany shows fibromyalgia patients have abnormal small fiber nerves compared to depression patients and healthy people. |
JOIN US
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Men and Women
are Treated and Respond Differently
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B Cell Differences in ME/CFS Patients
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Study Confirms CoQ10 Improves Fibromyalgia Symptoms
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A study from Spain confirms that Coenzyme Q10 reduces pain and other fibromyalgia symptoms. |
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NIH-Funded Study to Look at Glutathione in ME/CFS
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NIH-Funded
Study Looking at Combining Treatments for Fibromyalgia
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The University of Washington is conducting a study to see what combination of medication and non-medicinal treatments are most effective for fibromyalgia. |
WATCH US
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Klimas' Clinic / Research Center Now Accepting Patients
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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.
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Massachusetts
Lyme Disease Commission Report
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Adjusting Gut Microbes Can Bring Long-term ME/CFS Improvement
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Some Australians have determined that 70% of ME/CFS have short-term improvements and 58% have long-term improvements after bacteriotherapy. |
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Fatigue in Multiple Sclerosis Leads to Misdiagnosis
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Tick-borne Disease Alliance Holds Forum
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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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Become an agent for change
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Send this to your friends!
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