Pandora Org

Pandora Org is absolutely amazing! I HIGHLY recommend this organization! Lori Chapo Kroger kindly reached out to me after a friend contacted her about an emergency move I had to do. I’ve had chronic and severe Cfids/me/cfs for 23 years and the stress of having to move and the financial stresses of moving while being sick are taking a toll. I can’t tell everyone enough how much it meant to have someone just kindly contact me and offer so many meals. Lori then had Sandy Adkins Sizemore contact me to order Mom’s Meals. The kindness each exhibit is a huge blessing to people who are enduring the stresses that come while being chronically ill. In only a few days I received such a nice big box with 16 meals, fruit cups, rolls, juice boxes, cookies, and an activity book! Thank you SO much Lori, Sandy, and Pandora Organization!

Our ME community is underserved and under diagnosed. People with this disabling illness usually lose their jobs, therefore it easy to also lose self-esteem and self-worth. It's pure joy to volunteer for an organization that lets each person use their God-given talent to serve others. "Health First" is their volunteer motto since most volunteers also have ME. I'm glad for Pandora Org and all of their "workers." Your work here is so important because you let people with ME, who are invisible because they spend months to years home-bound, know they are cared for and not alone. You also help them live independently. Go Team Pandora Org!

Absolutely love and am grateful for Pandora.org. During a period of being bed bound with ME/CFS and another after cancer surgery with no local help, this group saved my life by making sure I had healthy meals that all I had to do were heat in microwave. GREAT organization!

They doctor at a Mayo Clinic held my hand and said, I know what you have
(ME/CFS) but you will find little or no support from your medical community back home. He was right!
What he didn’t know is that a month later I would find the support of Pandora.org! I have been apart of their support group, benefited from many life changing resources and have met so many new friends that share this journey.
My favorite resource is getting introduced to a healing meditation tape, so much apart of my healing

Pandora ORG is a wonderful organization that serves those with ME/CFS, fibromyalgia and other neuro-immune diseases. They not only provide meals to those who are too ill and isolated to prepare a meal, but they also provide quilts to comfort them. This organization is run by some wonderful people who truly understand the suffering of these people and advocate for them giving them comfort for today and hope for tomorrow.

There is no org that I know of that caters to and supports neuroimmune disorders in the same way they do. PANDORA does it all, both personally and peripherally, with direct patient contact and support and in educating those who care for us medically. Their Covered in Love quilt program gifted me at a time I was in a medical crisis and I know patients they have served with their Meals program who were so grateful for them.

They not only give accurate information to our physicians so we can be treated appropriately and correctly, but they give hands on support to patients with chronic illnesses such as ME/CFS, Fibromyalgia, Chronic Lyme and Gulf War veterans.

Most of all, PANDORA give HOPE to millions who have been suffering in silence, invisible and ignored.

I support them fully.

After many years of not knowing what was "wrong" with me, I found a support group where I met Lori Kroger. She always lent an ear and had answers for me. There are so many folks that have benefited from the Pandora Org. I hope they continue for many, many years to come.

Carla Hager

Pandora,offered my husband and I help with meals when he had surgery and I was unable to care for him.
It was a blessing to receive the meals , as well as the ease and convenience of using them the delivery to home and even to the kitchen counter.
Thanks you Pandora

I am so thankful for all Pandora Org does. As someone with a neuro-endocrine-immune disease (NEID), I greatly appreciate their advocacy work, which has prompted big gains in how well the federal government (HHS ) understands and supports these types of illnesses. Plus, just knowing that this group exists and can provide information and support is highly comforting when dealing with a illness that is not well understood or treated. And as a member of an online patient group for people with an NEID(s), I have had the pleasure of witnessing the support and lifeline they have given to many under-served people facing some of their most difficult days.

For some sufferers, Pandora's meal delivery service has made the difference between wasting away on crackers and eating decent food. And the quilts - each a beautiful, creative, colorful, lovingly handcrafted work of art, thoughtfully designed with the recipient in mind - provide a "cover of love" for those going through hard times. The quilts also put a smile of the face of all of us who are fortunate enough to see photos of the joy in the faces of the receivers.

I highly recommend supporting this group. All staff are volunteers, and virtually all donations go directly to services provided to patients, who are often neglected by the medical community and other not-for-profit service providers.

When my disabled friend was in desperate need of help.. I, also disabled and living 2000 miles away...she called every government agency, Church, local non profit, trying to find help for her and her autistic son to no avail. One email from me to to Pandora.org and my friend was given immediate assistance. Not only did it take care of her immediate physical need, she finally felt loved and cared for after a year of everyone else telling her no...we won’t help you. Thank you Pandora! For caring for the forgotten folks. God Bless!

Meal delivery service helps many homebound patients. The "Covered In Love Quilt program lifts the spirits of patients who are having a hard time. I have deep respect for,this program.

I have seen many friends find hope through this organization. Hope is a lifeline that is very sorely needed at times when pain and suffering is at a peak. Giving out quilts to cover these patients in love is an amazing act of compassion that offers so much comfort to worn minds and bodies!
As a huge group of people who have little help in the current medical community, Pandora being a voice for our suffering is a huge relief to us. Most do not have the physical ability to be proactive in our own medical future. I rely on them to be the voice for all of us. They do this well!
I am thankful for all the members of this amazing organization and all it does for the ill community.

PANDORA Org is totally made up of volunteers who are always ready and available to assist others in their fight with these terrible neuroendocrine-immune disorders. The volunteers have these disorders themselves so they know of what they speak which makes their informative information more timely. When I was very, very ill and totally unable to get out of bed, I received meals from this wonderful organization and tips to help myself get well. The information that I received from the hospital and doctor did not even have these little tips to feel better. I cannot fully express all of my thanks for their help when I needed it most!!!!

The people behind Pandora are the best!
Pandora helps chronically ill people with food when necessary and sends amazing self handmade quilts.
They literary cover us in love.
I am from a different continent and I was fortunate to receive a beautiful quilt. We feel so loved.

I just cannot say enough about Pandora.org. And all the things they do. They reach out to people during hardship. Or if they think they might be lonely and having a hard time. I mean a hard time for us is everyday care. Like just fixing a little something to eat or shower is a huge chalengelle for us. Our illness is so misunderstood by family and friends. It truly is sad and lonely. People really do not understand that we cannot function correctly.. This puts so much pressure on the spouse, if you have one. And for those that have no one, it is even worst. There acts of kindness just brings such happy tears.
Between the Beautiful handmade Quilts that are full of love put into them. That they send to people to make them feel loved and supported.. Or the Meals, 3 Meals a day for 7 Days. I got teary eye each time I had a meal. To know someone cared about me. This gave my husband a week off. And he really need it. To do such a Wonderful thing. When I was having such a hard time. Which I try not to talk about it.
I get so teary eye every time I see a picture of someone getting a covered in love Beautiful Quilt. Or someone getting A huge box full of Wonderful Meals.
Then there advocacy work to bring awareness. To Myalgic encephalomyelitis, a Neuro-immune disease. Which there are still no FDA approved treatments for us. So we are very misunderstood By most Doctors. What they do really wonderful. Very grateful to this organization.

Pandora has given out 64 homemade "covered in love" quilts to patients who are experiencing rough patches. Many times, just a tiny ray of hope is all that is needed to get through to the next rough patch. The notes the recipients write are heartwarming and heart wrenching, both at the same time. The quilts nourish the souls, and the food delivery nourishes the body. What a tremendous gift for those who feel forgotten and neglected.

Pandora is a beacon of hope to the many who are housebound and isolated, offering meals, gas money for doctors appointments, gifts and other forms of support. I was a beneficiary of one of their "covered in love" quilts. What a wonderful surprise at a time when I needed to feel that sense of being cared about. Pandora is a worthy organization, deserving of the support of the patient community.

Pandora Org provides support in so many ways for people in desparate need of that support. I don't know of another organization doing what Pandora Org does for the neuro-endocrine-immune disease community. The meals they deliver to patients in need make the difference in those people going hungry or not, and the quilts they send all over the country and world are a much-needed sign of support and love to people who are often alone and suffering. They are really caring for the patient community, and filling a void.

This is a wonderful organization that has helped me tremendously. I am chronically ill and mostly bed fast/home bound. I must depend on my husband for care including meals. When he became too ill to care for me for a while, PANDORA.org stepped in and provided meals for both of us until he was once again able to do so. This is just ONE example of the many ways that PANDORA.org changes the lives of the hurting for the better.

PANDORA brings light and joy for many dealing with too many dark days. Their love has covered me on more than one occasion. So very thankful for their caring hearts & hands!

PANDORA is such a needed voice for all patients with neuro-immune endocrine disorders. Not only do they advocate on a federal and local level they also assist patients with basic needs in the area. PANDORA gives all patients hope and dignity!

A wonderful organization that provides so much for those in need of support. They have helped my daughter greatly with her ME and helped her get diagnosed when no one else knew how. Great advocates as well! Very worthy of your donation!

I received the most beautiful red and white throw quilt from Covered in Love (one of the services provided by Pandora) at a most difficult time in my life. I have a chronic illness called M. E. which had progressed to the point where I couldn't work anymore. No matter how much I willed my body to function, it was like trying to get a car to start with a dead battery.

My doctor could see how much I was struggling, and indicated it was time to medically retire. I was risking my life by continuing to try to push forward. It was devastating news because I loved my job as a school counselor. I was no longer able to do what had been my passion, and to be productive in the world in the way I so desired. Financial worries loomed like thunder clouds overhead. My life seemed very bleak and limited at that time.

That amazing gift arrived at such the right moment. I cried out of sheer joy when I read the beautiful note which described how with every stitch there was much love sewn into that quilt. What had been such a moment of despair had been turned into such a moment filled with overflowing love!! It hasn't been quite a year yet since I received my quilt, but every time I see that gorgeous quilt or wrap myself up in it, love and joy abound.

Pandora has also offered meals at a very difficult time when my husband had been in the hospital for 11 days. He was now home, and I was literally on my own with out much help from the outside world. My husband who usually was the caretaker and did the food shopping was obviously unable to do so at this time. He was recuping from his surgery and unable to drive. I was in a vulnerable sutuation. I had exhausted the little energy I had, yet we had run out of food. I wasn't capable of going out shopping at that time. Pandora stepped in and offered to send us frozen prepared meals. I will always be indebted to them for that offer!!

I have seen how Pandora has so generously made the lives of others much better by the services it provides my patient community!!! Many are isolated, homebound, and without help. Thank you, Pandora, for always seeming to step in at the right moment !!!

PANDORA set me up with meals during a severe crash when I was unable to prepare nutritious food for myself. At a time when I needed help most, they were there for me. To one who has a disease that is invisible to most of the world, the help from this wonderful organization is a shining light in a dark world.

Wonderful organization! They have helped me with meals when I couldn't make my own and just recently I received the most beautiful quilt from the Covered in Love Program. It arrived on my birthday which was awesome! I love Pandora!

I was diagnosed in 2013 but was sick some time before. I was alone and in need of information and Pandora was there providing information (and hope) not available elsewhere. This non-profit is at the forefront of research....but also an organization that is there for the individual. I don't know what I would have done had I not found them. These illnesses are scary....but Pandora is there to hold your hand and help.

PANDORA is a long term established non profit helping the disabled chronically ill community. They add tremendous value to the lives of those affected with these horrible illness. Keep up the great work!!!

PANDORA is a terrific non profit resource for patients who are severely ill. Because our illness is not main stream in public or medicine even with the support of the IOM report and others. House and bedbound patients are reliant on a a great neuro-endocrine-immune NP for resources. These are resources we either can't physical acquire due to severe illness or don't have the resources PANDORA can provide. A great NP resource for caregivers and really sick patients. I have found Doctor referrals, wheelchair recommendations, any many other support I just wouldn't have the energy to find. Most of all PANDORA's board understand what I am going through even more than my own family members. A must have!!!

Pandora Org has been so very beneficial to me in many ways. I have received much information that I could pass on to my physicians to aid in my care of Fibromyalgia. Those of us who suffer with Fibromyalgia and ME cannot just exercise nor get up and be physically active like others can. With the aid of Pandora Org, I was given info for my doctor to help him understand why patients with Neuroendocrine Immune Disorders need to rest and do things at a slower pace. Pandora Org even has brochures describing NEIDS and proper patient care for physicians who just cannot understand their role in helping patient needs. Pandora Org representatives also attend government meetings concerning patients with NEIDS to give real patient testimony to what works and what does not. Pandora Org uses the information given freely by the patients and people whom it works with and not something contrived like some other places do. Pandora Org really cares about REAL people as evidenced by the many programs that it has such as 'Covered With Love', 'Mom's Meals' and others that assist patients who do not have the resources to help themselves. Pandora Org is there for it's patients and for their families and those that love them.

this is simply an amazing organization. i have severe ME. & PANDORA has been there for me every step of this difficult path. from being covered in love .. with the beautiful quilt. to helping me with meals. & offering in other realms to advocate on my behalf, as i am alone. i am so so grateful to all of the wonderful people involved in this wonderful organization. we are truly lucky to have them working & advocating on our behalf.

As a person who served on Pandora Org.'s board of directors in the past I can attest to what drives this organization. It is deep concern for patients who all across the country are regularly faced with seemingly impossible problems in their daily lives due to having little understood and often invisible diseases or conditions

Pandora Org. works behind the scenes to try to get much needed education programs up and running. They also work with medical centers that develop an interest in opening specialty clinics with the hope that more medical doctors and nurses will continue learning about and providing informed, proper medical care for the millions who suffer from nuero/endocrine/immune diseases.

The negative comments left for this organization came about due to a disagreement about an advocacy issue. Reading through those reviews it could appear as if Pandora Org. did something self serving and wrong. Nothing could be further from the truth. There are more patients who applauded Pandora Org. for their stand on an issue involving the IOM than the negative reviewers claim. The fact that some did not agree with the decision in no way means Pandora is self serving, works against patients or that their board members benefit in some personal way etc.. It actually shows that the organization is able to stand up and do what they feel is best for patients after reviewing all the facts of an issue. There is never total support for any one idea in the work of advocacy.

The heart and soul of this organization is a woman named Lori Kroger. I have personally worked with her and I can attest to her honesty, dedication to the patient community and to the fact that neither she, nor any board member personally profits from serving on the board. All board members are volunteers. Most who serve on the board of directors are sick themselves They pour out what little energy they may have regularly on behalf of the patient population. That is honorable and should be praised.

It is easy to cast stones, make accusations and sully someone's good reputation. Neither Pandora Org. or it's board members deserve anything but praise for the excellent work they do, the comfort they give and the sleepless nights many of them spend listening to and being concerned over different situations that patients are struggling with.

I am no longer a board member but I think my best endorsement is that I donate to this organization financially and trust them implicitly. I have had the pleasure of an inside view to how this organization operates and how it's members behave. I have also seen first hand the help behind the scenes that Pandora Org. offers. I would recommend you study this organization and support it either financially or by becoming a volunteer.

PANDORA Org is a wonderful organization and I have personally benefited from their services. I was wrapped with love from a hand made quilt during a time of intense sickness and pain. I was also sent Ensure drinks during a time that I was unable to eat. I am so thankful for their physician and medical professional training that is so desperately needed since neuro endocrine immune disorders are not always studied in medical school. This is an invaluable resource for people in the ME/CFS patient group. I am so thankful for Pandora Org!!

Pandora is a wonderful organization which does great work for the patient community. I especially am grateful for their efforts to educate medical professionals - very important work for all of us effected by neuroendocrineimmune disorders! I have been a recipient of their direct-to-patient services and can't even begin to say how much that means to me.

PANDORAORG 's concern for those of us with invisible illnesses such as ME/CFS is honest and from the heart, they care about ALL illnesses and the people suffering from them. Not many other organizations get involved with the patients community. From quilts to wrap a patient in love, to advocacy projects, physician education, to feeding a debilitated NEIDS patient, things like providing meals, someone is always ready to if nothing else LISTEN and offer a shoulder to get you thru bad moments PANDORAORG ensures a better today and tomorrow for all of us we're lucky to have this organization and life dealing with an invisible illness would be so much easier if there were more PANDORAORG and similar in the world

Wonderful caring group helping those with what are to most..." Invisible illnesses."

I personally have benefited by being informed and cared about then through the covered in love program.... At exactly the moment I need that reminder!


The way they share research info and such had been just a real blessing in my life.

I am an ME patient and applaud Pandoras participation in the IOM contract which resulted in a positive outcome with the hallmark of the condition , post exertion neuroimmune exhaustion being highlighted as a principle diagnosic critera . Pandora actively spoke for the patient community , presenting patient experience and research for the panel to include in their scientific research review . I am very appreciative to the organisation for devoting their time to representing the patient community as I personally do not have the energy to consistently participate in advocacy myself .

I can not give this organization a good review. PANDORA does not represent the ME and CFS community and are doing great harm by partnering with CAA/SMCI , HHS, NIH by participating in the IOM and NIH Partners To Prevention which is not based on science and will harm this patient community.

Pandora Org does real harm to Myalgic Encephalomyelitis patients by pretending to be a national organization and helping their friends in government agencies. Right now they are helping the National Institutes of Health, an agency of the Dept. of Health and Human Services, redefine ME so it will require treatment by psychs. In addition, Pandora Org told NIH that they should require even severely affected ME patients to exercise. This is ludicrous! Exercise is very harmful for ME patients and frequently causes them to be bedbound for weeks or months after exercise. It would be better for ME patients if Pandora just went back to doing whatever it does for its Michigan members instead of hurting ME patients all over the country.

Really, I am a CLIENT NOT SERVED. PANDORA ORG is not helpful to actual patients. They have proven again and again that they do not care about the people suffering with the illness. They should just disappear and stop torturing patients. I can't begin to describe how much trouble their incorrect information given to my doctor has caused me. They recommend exercise be required even of sufferers with very severe M.E. I have personally tried their recommendation for exercise--increasing amounts of exercise supposedly to build up ability to exercise--and it causes me to crash so I cannot get out of bed for weeks. These people are not helping patients. They are harming patients.

This growing organization has helped me connect with other people who have my illness (ME/CFS) and has helped me make my voice heard among government officials and medical professionals. PANDORA Org gives me some hope for my future, which is a precious gift.

Pandora Org proclaim to be advocates but they are not. Advocates fight for the people they serve. Pandora are only concerned with their own bottom line. Patients need to ask what have they done for you? Nothing except help implement an illness name that is totally meaningless. And they went against patients requests for them to object to a redefining of the illness ME which already had a definition. They have helped assure that ME will be forever cast as a non-illness and that biomedical research will never again exist. They are not advocates, they are running the business of non-profit which caters to the government interests. Meaning no research dollars will go for the biomedical cause again. Only CBT/ GET and antidepressant which make the illness worse.

If Pandora Org were honest and only said they are a support group for a small number of patients in Michigan, they might not be too bad, but NO, they try to say they are a national group and that they do work all over the country. This is not true. They only give quilts to people in Michigan and sometimes they give out donated gas cards to people who are active on their facebook page. That's it. That's what they do. They only do things for a very small number of their friends and they do nothing to help the millions of people lying in beds with chronic illnesses. They are a phony organization and they lie.

N.B. Comments listed here go back to October 2010--four years ago. We are now into the IOM-P2P farce that has been orchestrated -- within its set-up rules and parameters, to harm ME/CFS patients further.

The ME/CFS Experts and Researchers called for the STOP of the IOM contract--yet PANDORA, claiming to represent patients, did NOT back the ME/CFS Experts and Researchers.

PANDORA is not serving in the best interests of patients -- PANDORA along with CFIDS / CAA /SMCI are out for their own interests in lining up with NIH--CDC--IOM. The IOM and P2P = HARM to the patient community. This was fully recognized by the ME/CFS Experts and Researchers.

Now, it is four years later from these comments--many patients are seeing the truth about what PANDORA stands for and what it does not.

"Sadly, instead of showing solidarity with the experts and the patient community it is asserting to represent, PANDORA, following in the CFIDS Association of America’s (CAA) footsteps, chose not to stand with the ME experts regardless of what it is claiming. After much speculation last week by patients on the position of PANDORA on the IOM contract and silence for days, PANDORA went into full-blown damage-control mode on October 14, 2013. It finally released an official statement on the IOM contract (“position paper”). In it, PANDORA concedes that it “turn[ed] in a list of expert nominations.” Even though we pretty much knew, from the information that leaked last week, that this was going on, many patients’ hearts sank." For more info go to http://thoughtsaboutme.com/2013/10/16/opening-pandoras-box-pandora-cozies-up-to-iom/

PANDORA Org says it serves patients, but the only people it really serves are its officers and staff. They have sold out the interests of patients again and again. Right now they are serving their own interests against those of real patients in order to have a "seat at the table" when the US government redefines ME/CFS. Real ME patients know that PANDORA lies http://www.mecfsforums.com/index.php/topic,18375.msg156941.html#msg156941

I should say I am a client "not served." PANDORA Org says it is a national organization to benefit people with Myalgic Encephalomyelitis, but all it really does is serve a few members of small support groups in Michigan and Alabama, where its staff members live. On the national scene, it has failed to represent the interests of ME patients again and again, as it is doing now, with its recommendation for exercise to be required of ME patients, even those who suffer from severe ME.

With phony "friends" like these, who needs enemies?

PANDORAORG 's concern for those of us with invisible illnesses such as ME/CFS is honest and from the heart. No other organization I know is as personally involved with the patient community. From quilts to wrap a patient in love, to advocacy projects, physician education, to feeding a debilitated NEIDS patient, PANDORAORG ensures a better today and tomorrow for all of us.

I have never had the pleasure of working with a more dedicated group of individuals that put the patient's needs as an absolute top priority.

They take on the challenge of making people aware of very devastating illnesses and advocating on their behalf.

As a patient with ME/CFS, I am immensely grateful to PANDORA ORG for all their amazing advocacy work. Without organizations like them, we will never get the proper funding for biomedical ME/CFS research or the health care that the ME/CFS patient community so desperately needs.

ME/CFS is a severely debilitating neuroimmune disease which has been overlooked by the public authorities for decades. Change is needed, and PANDORA helps bring it around.

Pandora does an amazing job of supporting a large and usually neglected community. The most important thing Pandora does for me is help me to keep hope. They educate the medical profession, which is a HUGE need, and patients and family, as well as offering a lot of practical and trusted help, when often there is virtually no support or understanding in a patient's home community

There needs to be more groups like this one. Educating the medical field and patients. Giving help to those who would normally suffer in silence due to the range of care/education their medical team has. Fighting for so many that cannot make it out their bed or home. Compassionate about all that are suffering.

PANDORA ORG does an outstanding job for patients with NEID's and their families! They work to educate patients, their families, and physicians about NEID's. They engage in advocacy, support research, and are committed to improving the qualify of life for patients. PANDORA is an all-volunteer organization with compassionate and extremely committed leadership!

As someone with multiple NEIDs, I am so thankful that PANDORA exists. Not only do they do a ton of good work; helping spread awareness, advocacy, education, supporting patients in various ways, promoting research, etc, etc, but by doing so, they also bring so much hope to a very under served patient population. When one is as sick as many of us are, and there are so few that even try to understand, let alone actually help, and so little good research for treatments and cures, etc, knowing that there is a group that truly cares is HUGE. Many in this patient population wind up committing suicide, because we are so sick, and have so little hope for good treatments, and so little validation. The impact of the hope for a better future that PANDORA gives us cannot be overstated, nor can the understanding and caring that they show over and over to so many patients.

I'm so thankful for all their work! They are helping those of us who are too ill too fight for research for CFIDS/ME!

Pandoraorg is here to help. They have done a wonderful job gathering information pertaining to those that suffer from many medical conditions and spreading the word. They also work to improve the lives of those suffering.

How about a new name? I suggest Neuro-Endochrine Exhaustion Disorder - (NEED)!

My non-profit has worked with Pandora since 2006 and have found them exceptional. They are volunteers who work tirelessly on behalf of patients suffering form ME/CFS, Fibromyalgia and neuroimmune illnesses. IIt has been our pleasure to have worked with them on many projects.

This group has done well in Michigan and is working on bringing their services to other states and county's across the USA.

I should say I am a client UNSERVED! This organization is actually a local support organization for people in Michigan. Since I do not live in Michigan, all it does for me is continually ask me for money so they can do their services for their Michigan people.

They say they are a national organization, but all they really do is serve people in Michigan.

PANDORA exceeds expectations. They have supported my with ME/CFS with educational programs, providing me a place to stay when advocating. Top KNOTCH non profit serving the neuroendorcineinnu disorders! I can't thank thank them enough! Most advocates have this disease so it is incredible with the amount of work and efforts that take place year after year!

Always read very helpful information and they keep me informed of the latest news about CFS. A plus!

In my opinion P.A.N.D.O.R.A. has done so much for an under-served population (PNEIDS) with so little. Giving attention to medical,social,emotional and political needs of persons with neuro-endocrine-immune disorders.
Making efforts to unify to community of patients for the betterment of all.
I know for me personally at about the 3rd yr after being diagnosed and very discouraged (now @10yrs )
I found a P.A.N.D.O.R.A support group that had such a positive aura it helped me tremendously. I was motivated to become a volunteer and work on projects.It gave me a much needed outlet. Unfortunately my condition has deteriorated that I'm not able to participate as before, however I still support P.A.N.DO.R.A. in anyway I can and continue to get support from them by being able to stay current and knowing they are doing the best they can for for persons like M.E.

When I was first diagnosed with CFS, many of my "friends" told me to just "suck it up" and push through, there's no such thing. Many of us heard the same type of things, but with the education and support, I've received from the support group, I've helped the people most important to me to understand. They really have saved my life!

In 2007, I first met members of PANDORA and its founder Marly Silverman in person at a conference in Fort Lauderdale. As founder/president of the LIFELYME Foundation, Inc., I established our organization to serve as a educational resource for Lyme disease and other Neuro Immune Disorders. In 2008, two members of PANDORA were invited to speak at a conference our organization co-sponsored with the University of South Florida in St. Petersburg, FL. The conference was called, "Similarities and Paradoxes in Chronic Illnesses". Our intention was to bring together for the first time the top physicians and researchers with expertise on illnesses under the NEI umbrella to share their expertise on CFS/ME, Fibromyalgia, Lyme Disease, Gulf War Syndrome and Environmental Illnesses. Speakers Included: Brian Fallon MD, Nancy Klimas MD, Charles Ray Jones MD, JJemsek, MD, Leslie Fein MD, Dr. Kenneth Friedman Ph.D, and Kerry Clark Ph.D. Epidemiologist. In the following year, LIFELYME partnered with PANDORA to establish a NEI Center in New Jersey. A 'Resolution' to establish a NEI Center in NJ was passed unanimously. Hopefully in the future progress will be revitalized and make this dream a reality. Support is paramount to the success of the future visions of PANDORA. The members of PANDORA are giving their all in this effort to provide awareness, education, research and patient care for all patients suffering with these illnesses. Support PANDORA - The health of all Americans in the future depends on everyone's support.

When I first became ill with this devastating disease, the first information I took seriously was a few websites that had "Memorial Lists" of people who suffered greatly before their disease overcame them. However, P.A.N.D.O.R.A was the first Patient Centered Organization that I could trust for accurate, and hopeful education regarding my disease day by day. There was much support for me at all stages of my deteriorating health. As time went on, I was better informed to focus on all the ways my Quality of Life can be improved. This is a very frustrating illness to get medical care for, but with the help of P.A.N.D.O.R.A's long suffering expertise, I have grown immensely in understanding how my life can be stronger on a daily basis.

I have learned to be an advocate for myself and others thanks to Lori and Marly. I enjoy any opportunity to interact with the staff and Leadership of P.A.N.D.O.R.A. I believe with the coaching, advocacy, education opportunities and my own personal, individual assistance, my life has been greatly improved in spite of the illness. P.A.N.D.O.R.A enlightens HOPE for millions who seek them for comfort.

I have been attending PANDORA meetings in Grand Rapids for several months now. The work Lori does to educate us, and also the supportive atmosphere, gives hope and practical ideas of how to live with, and improve one's quality of life when dealing with a neuro-endocrine immune disorder. There is so much that this organization is doing to bring awareness to others about these devastating diseases, as well as informing medical professionals and government officials about them, it is amazing! I am happy to be a part of spreading the word, and would not hesitate to recommend supporting their top notch research efforts and advocacy work. Awareness of the difficulties of living with Chronic Fatigue, Lyme Disease, Fibromyalgia, Gulf War Syndrome and Multiple Chemical Sensitivities is so needed! More knowledge will be empowering for those who struggle, and those who strive to treat these debilitating diseases.

I know of few other organizations who help patients who suffer from Neuroendocrineimmune Disorders as PANDORA. It is outstanding. The information it disseminates to the patient community is stellar and plentiful, to the point it can even be overwhelming. I met Tina Tidmore at the 2012 FDA Ampligen meeting and hope to get in touch with her tonight or sometime soon. I found out about a discount lab for patients who are uninsured or underinsured. I am going to call PANDORA for more information. I met another lady at the 2013 April FDA meeting who represented PANDORA and she was wonderful to talk to as well. They just work so hard and do so much. I personally cannot keep up with all their efforts. They keep pressing on to help patients who don't have very much else. THANK YOU PANDORA!

the national cfids foundation announced a causal find with links to radiation in a newsbreak in August 2012 'typo 2010' working close with research team from wayne state university wher they found broken cromosones with translocations...this same group found the same in 2007 in gulf war syndrome patients and was on the discovery channel on utube parts 1to5 entitled 'gulf war vets conspiracy blood test' my understanding was this was done by blood tests and the latest ones were found in urine samples from the cfs group...some had gamma some had alpha some had alpha gamma and beta...now the cfids foundation is looking also into vibrio fish infections back at the university of hawaii because of a previous study there on ciguatera 'epitopes' which was showing something very different to normal ciguatera infections plus the fact numerous patients attribute their onset of illnesses after eating different fish or shell fish type meals...I know for a fact while in Montreal there was a restaurant my fiance and I would eat at on a regular basis and this same restaurant had a couple of deaths during this time due to undercooked or contaminated sea foods so I now wonder if there is a link to that time...also drs dan peterson and nancy klimas returned from bond university with a find in I think was cd57 which is consistent to radiation illness and I have heard also our bloods are florescent and glows...is it highly likely i think its very plausible plus we had chernobyl incident plus 3 mile island now japan plus military vets are now speaking out on chemical biological and radiation weapons used in all gulf wars...plus greenpeace investigated numerous radiactive drum barrels dumped by militaries in our oceans close to shore and when they did investigate these drums were completely empty...wher did the radiation go????????????? sincerely and always the full truth mr aidan g walsh

ME/CFS has a horribly negative impact on millions of lives. PANDORA is a positive voice for those of us who are ill. The people are so warm, friendly, helpful, and giving. I just can't say enough good things about this organization, and will volunteer to help whenever I am able.

PANDORA works with neuroendocrine immune disorders, including ME/CFS, Fibromyalgia, Multiple Chemical Sensitivities, Chronic Lyme Disease, and Gulf War Illnesses. They provide education for patients and for physicians. They advocate for government services for patients and increased government funding for medical research. An innovative program is the training of patients to be effective advocates for themselves. Local fund-raisers are held to fund patient services and medical research. This is an organization which has inspired hope in me and in countless other patients in this country and beyond!

PANDORA does and AMAZING job at advocacy and raising awareness and helping the Millions with ME/CFS , Fibromyalgia, MCS and other related invisile illesses.So many suffer in silence with these diseases which are so poorly understood by both the Medical profession and the public-including patients own families and friends. Providing information, compassion and understanding and support is so key to being able to survive, just day to day, and to have hope for a better future. They give outstanding individual, personal and group support and are always there, on Facebook, Website, and at all important Government and other meetings, as well as organizing many of their own events.

PANDORA is dedicated to improving the lives of people with Myalgic Encephalomyelitis (M.E.). PANDORA is focused on helping patients integrate M.E. as part of their daily lives. This is mostly done through education. PANDORA is also heavily involved in awareness and advocacy. All of this is done to bring hope and help to the millions suffering from neuroimmune disease such as M.E.

This organization started as a one-woman show in Florida with an impossible mission. With a lot of hard work, the organization has grown from a local, statewide organization into a national presence. Although the organization represents and speaks on the behalf of other illnesses, P.A.N.D.O.R.A's focus on patient advocacy for chronic fatigue syndrome patients is unique. There is currently no other organization that advocates for the million or more patients with this illness at the national level. Advocacy for patients with this illness at the national level is of paramount importance as the federal government and the medical profession have ignored these patients and challenged the patients' belief that their belief is "real." Without P.A.N.D.OR.A. advocacy at the national level, there is little if any hope for these patients leaving them to suffer untreated or kill themselves.

I am greatly impressed by the work PANDORA does to help patients like me and to raise awareness of these devastating diseases.

The Advocacy Campaign set in motion by PANDORA helped to free
our Grandson from the unauthorized medical experiment conducted by
our local Department Of Social Services (DSS) in an attempt to prove
that he was not really sick and did not have ME/CFS. Local and national
politicians and even the Govenor of the State of North Carolina were
all alerted by PANDORA and their contacts worldwide. Our Grandson
was finally released 10 months after removal from his parents loving
home. Thank you .

I commend P.A.N.D.O.R.A.s focus on quality of life for persons with
Neuroimmune disorders, efforts in embracing and unifying all persons and other organizations dealing with NEI disorders in such a positive manor. A model all such organizations can benefit from. The functions and accomplishments are immense considering the small budget and relatively small size of the Org.
The founder is truly an inspiring role model of dedication and altruistic acts in the face of her own struggle with NEIDs.

PANDORA is a wonderful organization and one that our family received direct help from during a serious crises in 2009/2010 and one involving our entire
family.

We were very fortunate to have PANDORA's assistance and our family feels blessed to have received their help. Please visit our family's website www.bringingryanhome.com to learn of our crisis and see in action what this organization helped do for just one family. With enough funding, this organization could continue to assist many families. To this day, their support cannot be replaced.
My hopes are that they will be able to assist every family that runs into the same situation.

PANDORA is always at the forefront in advocacy on behalf of people with neuroimmune disorders.

PANDORA rocks hard! They do a lot with a limited budget. Noone takes any salary. PANDORA lobbies in DC and state capitols- successfully. One nei disease center has been set up in NJ. They are working on one in FL. They fundraise in the general population- walk a thons etc- make grants for research. Their brand of advocacy is effective and ME patients are in dire need of it. PLEASE SUPPORT PANDORA ANY WAY YOU CAN! Thank you!

I am a member of PANDORA and have been for many years. This organization does many amazing things for the very sick with neurological, endocrine and immune system diseases and disorders. To my knowledge there is NOT another organization that is helping all of these very sick people in so many areas. The head of PANDORA, Marla Silverman, is a CFS sick person who knocks herself out daily trying to do what is best for the entire community as well as individuals in desperate need. PANDORA has provided the infrastrcutre (financing through PANFORA) for a new "Democratic Advocacy" for those with ME/CFS. This group is called ME/CFS Worldwide Patient Alliance. I am a volunteer in this group and we have raised money to get a 1/2 page AD in the Washington Post alerting the US and international public about ME/CFS and the newly discovered and infectious third human retrovirus. In four short months, this advocacy group has over 1,600 members and has raised over $10K. This is an amazing achievement. Ms. Silverman came up with the idea of a patient-driven/patient run advocacy and it has worked. It was what the very sick wanted: to have their voices heard by the governments and the public. PANFORA and Marla Silverman have had an enormous and critical impact on the neruoendocrineimmune sick. PANDORA and Marla Silverman are well known and highly respected in the communities they work within. There is no negative comments or changes that need to be made. PANDORA is a model for what a non-profit SHOULD be doing.

P.A.N.D.O.R.A. is a committed organization to advocacy and research. though they are small, they are mighty and always consider the patient first above all else. I appreciate their involvement in political and research indeavors, and keeping the community well informed. It is obvious their compassion is from the heart. They let no stone go unturned, and for that I am eternally grateful.

I enjoy volunteering for P.A.N.D.O.R.A. during their patient- medical conferences and helping them in the volunteer office. I also have participated in their Quality of Life Advocate Program (Pay Forward) by decluttering the homes of individuals with NEIDs. P.A.N.D.O.R.A. is filling a huge gap in the advocacy and creating awareness in the state of Florida and beyond. It is good to help others at a time when they needed the most.

PANDORA is a charity which serves a very underserved and often neglected population of people. This group has advocated for both adults and children with NueroendocrineImmune disorders and is working hard to create only the second research and treatment center for several understudied and not well understood diseases.

I would like to personally review my experience with P.A.N.D.O.R.A which stands for Patient Alliance Neuroendocrineimmune Disorders where their help as been so timely and accurate for me. I had the most wonderful doctor (very unusual for patients of ME/CFS) since I was 24 years old. At age 33 my life would stop as I knew it. Similar onsets from so many with chronic fatigue syndrome. I was so very fortunate that my GP had the knowledge and empathy to help me deal with this devastating disease for 17 years. Sadly he became ill himself and had to retire. Thank God for P.A.N.D.O.R.A.!! They keep very accurate, current, and appropriate listings for specialists to treat all of my symptoms. I went through 2 months of pure hell feeling like a lone survivor on an island with no help. My doctor that had taken over for my prior doctor didn't have a clue how to treat cfs properly. I was very very scared. I couldn't believe that in 2010 there was so little correct information coming out of the mouth of my new provider! This is why P.A.N.D.O.R.A. became a saving grace. The information they provide, the accuracy and educational guides are so needed by our very ill community. Please choose them and help them get the correct knowledge out for physicians and patients alike. We are suffering and they are comforting! Please let them expand their vision to help all suffering with NEI diseases. Sincerely yours, Gina Giarrusso Bettor gbettor@gmail.com

PANDORA gives patient with neuro-endocrine- immune diseases HOPE. As a patient with ME/CFS, not many organization root our way and fight for us. PANDORA assisted a family in getting their son back from foster home. Ryan, a patient with ME/CFS has been removed from his home because it was thought that his parents were abusing him. Ryan and his family has done nothing wrong, and Ryan could not attends school due to a very disabling illness with a very demeaning name. PANDORA is working towards building, and getting funding for neuro-immune- endocrine illnesses, such as ME/CFS, FMS, Gulf War illness, and Lyme disease. They deserve recognition.

I am a disabled Desert STorm veteran with many of the chronic illnesses that PANDORA raises awareness for. I have had CFS and fibromyalgia since i was in Desert STorm. In 2005, i looked on the internet for an organization that advocates for sick Desert Storm vets. This one was the closest one i could find. They gave me advice and support by email and phone. I moved down to South Florida in 2007. BEfore my health took a downturn, i advocated for the foundation on Facebook and Twitter. Marly Silverman, the philanthropist and creator of this organization, also suffers from CFS. She works tirelessly and endlessly , going to meetings with doctors, government agencies, Congress, etc,. She organizes petitions, sets up fundraisers, anything you can think of, she does it.

I have severe ME-CFS & have had the condition for 50 odd years now, it waxes and wanes. For what ever reason the government agencies have, on the whole, been dismissive of this illness since 1970. PANDORA seems willing to stand up to these agencies in a way that our other national group has not. In some instances they can be a little heavy handed but considering how lax the other national org has been, that might be a good thing. They will have to recognize that people must be allowed to choose what their own paths will be; but this problem could be due to the youth of the organization.

I am a 49 yr old wife and mom, who has been disabled with ME/CFS/FMS/Lyme for 15 yrs. My family has been affected with numerous NEI illnesses. It’s important to me and my family that P.A.N.D.O.R.A. gets the support it deserves. Marly Silverman, founder of P.A.N.D.O.R.A. is the most committed NEI advocate I’ve ever met. I finally met her for the first time in Washington, DC at the October 2010 CFSAC Committee Meeting. Her work to create the NEI Center in NJ is inspiring. She has been instrumental in the returning of Ryan Baldwin home and helping his family raise money for the enormous legal and medical bills. P.A.N.D.O.R.A. has created the MCWPA (ME/CFS Worldwide Patient Alliance), which is a volunteer patient organization, primarily aimed at raising funds for a major ad campaign. I am personally grateful for the service P.A.N.D.O.R.A. provides.

PANDORA and founder Marly lead a sincere effort to boost hope where many MDS, many government officials and some NGOs have already raised hands up in the air or are in plain denial. Foundations like PANDORA keep the hope alive which often makes dreams become reality. Thank you Sincerely C. Kesta Executive Producer / Director "The Chronic Pain Educational Documentary Series" http://www.head2toe.tv

I am a board member and ex-President for a CFS/ME Association and I am proud to be working with Pandora to help bring awareness and education to CFS/ME/Fibromyalgia patients and the general public. Everyone at Pandora are dedicated, caring and professional individuals who are fighting hard to bring recognition to very misunderstood illnesses. They are always happy to reach out to anyone in need and work with any organization that helps people with Neuroendocrine-Neuroimmune illnesses.

I met Marla Silverman, the founder of PANDORA many years ago. She has dedicated her life to us, the patients with neuroendocrine-immune diseases. This organization has helped me in so many ways. To know that there is a team of people getting together grassroot efforts to advocate on our behalf is such a comfort. They are fighting for our rights and making doctors and the government aware of our plight. They also are constantly educating people as to the quality of our lives in order to improve them. I would love to be out there marching along with them, but I am too sick. I love that I can watch them march for me, usually even designating a chair or a placard for those of us who can't be there. Also, in the almost 20 years I have been ill, the workshops and support groups that PANDORA has sponsored, have pulled me through some extremely difficult times. PANDORA has served our NEIDS community and me in more ways than I can say. It is a wonderful organization and deserves your consideration. Thank you.

It's not hard to describe the comfort, love and understanding this organization gives to so many as support. "PANDORA" rises above all the rest. I'm an Advocate Extrodinaire and proud to be part of PANDORA and their mission. As a patient "52" years of age with a condition called "EHLERS DANLOS SYNDROME" it falls under other related disorders. Not knowing what I had until the age of 48 - the loss of my home,job,husband and eventually benefits. No one believing in me was an emotional and physical struggle I wish on no one. Yes diagnosed at 48 and born with the condition. Pandora and it's staff/volunteers supported me and still do to this day with e mails and phone calls from time to time. If I ever need to reach out they are there to listen and have BIG shoulders. Being single is something I've accepted as some see us in public as defected. We are not - my companion dog "Stitch" helps me with company. Marly - founder is a beautiful person and deserves to shine above being noticed for her efforts. I sincerely hope that one day people in public will not judge for looking healthy and patients being so sick. It will be a great mission to get our court system and government to believe in people like me that look healthy and are so ill. It may be hard to understand but God created us all equal as his children just some he made a little more special. For me life now has no boundries and challenges for I can! I can do anything for I believe in myself because of foundations like PANDORA that have given me the hope, dreams and possibilities we all can! Any one person that may feel alone and lost when it comes to ME/CF/FM I sincerely hope you will take the time to join in the efforts TOGETHER WE CAN. THANK YOU PANDORA - centralfleds@gmail.com

I have had ME/CFS, a neuroendocrineimmune disorder, since 1990. The disease has left me unable to do much, but I continue to try to advocate for greater recognition and funding of NEI disorders such as mine. Over the years, I have seen many advocacy organization come and go. Others have lost touch with the patients they purport to represent. I was thrilled when I first came across P.A.N.D.O.R.A. because this is an organization with staying power. P.A.N.D.O.R.A. listens, considers, and carefully crafts messages to increase recognition and funding for NEI disorders. I am particularly impressed with the way it fosters collaboration among diverse patient advocacy groups. The result of this are strong messages with mass support behind them. I have worked on projects with P.A.N.D.O.R.A. and have seen the difference in government response due to the way it functions. P.A.N.D.O.R.A., in my opinion, will only grow in strength and influence because of the caring, sharing, coalition-building organization it is. And it is desperately needed!

NEI disease is mostly ignored and misunderstood. Most doctors know little or nothing about NEI disease, and there is no reliable treatment. I can no longer work because of NEI disease. Before NEI disease forced me to stop working, I was a Senior Administrative Analyst. Part of my work was to pick companies to work for us as on specific projects. P.A.N.D.O.R.A. impresses me so much I don't hesitate to recommend them. For example, they spearheaded an effort which led to the State of New Jersey approving the building and funding of a a NEI research and treatment center. This is exactly the kind of result we need if we want find a cure.

I am a 66 yo healthy male with a 32 yo daughter with cfids and an old girlfriend who had it. I have two colleagues who culture fibroblasts who got it. I have a patient who litigated for 25 years over employee disability insurance. She had to give up in order to get an inadequate settlement. You can not fight a war with the walking wounded. You have to organize financially and politically and push for decades to get the awareness and funding for the research necessary to solve the problem. Patient advocacy groups link patients to the effort to do this. Join PANDORA and other groups and do your part.

P.A.N.D.O.R.A. is an organization that reaches out to help people with neuroendocrine immune disorders. Based in Florida, they are known both nationally and internationally for their amazing work. P.A.N.D.O.R.A. is there to help, to foster research, to share current data, to extend a hand in support. Other organizations addressing similar issues have benefited from the encouragement provided to them by P.A.N.D.O.R.A. As a member of one of those organizations, I am thankful for the assistance we have received, which in turn increases patient outreach.

I was blessed to find PANDORA through the CFSAC online. I immediately began to think how very fortunate I was to have found such a rock solid website. There has been no limit to the massive amounts of knowledge I have gained regarding NEI patients. Having access to meetings attended by highly learned physicians and researchers in order to provide us with up to the minute news on the progress being made in these fields is a Godsend for me. Keeping patients alerted to the scientific gains as well as donating our own feedback is surreal. It's taken some years for those fighting for us at the top of the field to at last reach this point of having something to work with. I have learned more about my body in the 6plus years I have been sick thanks to PANDORA. Marly and Robert Silverman are such awesome advocates on our behalf, never leaving out details. Everything that comes across my email screen regarding my illness brings me a bit closer to understanding the complexity of it.

We have had CFIDS in our family for 14 years now. When we first got sick, few people had heard of our illness, and fewer people could act as guides for what we were experiencing. When we could not find an informed doctor to help us, online we found an educational conference, for which PANDORA was a sponsoring organizer. At that conference, we finally - and for the first time - met others in our own situation. We were especially thrilled to meet doctors who not only treat patients, but who participate in research and know the cutting edge science of our illness. The conference, and the ongoing online support we've found through Pandora, changed our lives. We no longer feel alone, and believe me - it's a big and lonely world out there when you are sick and isolated, like we were before finding Pandora. They educate the public and medical personnel, and are an important and worthwhile cause for anyone looking for a good place for their donations!

I have a number of auto-immune diseases including Fibromyalgia, Sjogren's Syndrome, Rhumetoid Arthritis, Psueod Gout and Interstitial Cystitis. I live in Oklahoma City and there is very little support here for patients with chronic pain issues. Unfortunately that also means there is very little education regarding chronic pain issues. P.A.N.D.O.R.A. stives to both serve the individual and to educate the public. This is essential to both treatment and to finding cures for the various diseases which cause serious pain. Their work has been invaluable in revealing to the public eye, the seriousness of the issues. Without non-profits such as P.A.N.D.O.R.A, there would be no education, no medications advocated for and no cures! Please support P.A.N.D.O.R.A. in any way possible in the future - help them as they have helped me!!