I have tears in my eyes when I try to describe what PANDORA has done for me. They offered support and guidance when all seemed lost. A family member was hospitalized and our rights were being violated. There was internal chaos within the hospital over our case. PANDORA was there with us, step by step, sorting out the steps, and with PANDORA' s help and our insurance company, we were able to have the strength to leave the hospital AMA and get the second opinion we needed, which was drastically different from the first. They also sent us a gas card to help with travel cost. The passion and compassion that drives the volunteer members is amazing. They understand the needs of people who have NEIDS. They change words into action for what is needed most to help a person overcome rough spots.
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!
Your donations make a huge difference in peoples lives. 98% of donations are used for programing. It is a pleasure to serve the people who rely on Pandora Org! This is the only ME, CFS and fibromyalgia organization that directly serves patients. My heart melts every time a recipient is over the moon happy to get help.
You see, most people with these illnesses feel abandoned and isolated. Pandora Org remembers them and acknowledges their suffering and existence. Can you imagine being too sick to walk to the kitchen to cook? People with severe ME are bed bound. I know people who have eaten cereal for each meal because it's easy to have a box of cereal at bedside. Pandora Delivers™ fresh meals is a game changer for these people. It's a difference of being placed in managed care or staying home and remaining independent.
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
This non profit organization has helped so much with my battling a misunderstood illness.
I have learned so much and have made so many friends. Without people like this I felt so alone trying to understand what even Doctors don't understand. Thank you Thank You Thank You!
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.
I have supported and worked with this great organization for three years now. 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.
There is no org that I know of that caters to and supports neuroimmune disorders. PANDORA does it all, both personally and peripherally, with direct patient contact and support and in educating those who care for us medically.
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.
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.
I have tears in my eyes when I try to describe what PANDORA has done for me. They offered support and guidance when all seemed lost. A family member was hospitalized and our rights were being violated. There was internal chaos within the hospital over our case. PANDORA was there with us, step by step, sorting out the steps, and with PANDORA' s help and our insurance company, we were able to have the strength to leave the hospital AMA and get the second opinion we needed, which was drastically different from the first. They also sent us a gas card to help with travel cost.
The passion and compassion that drives the volunteer members is amazing. They understand the needs of people who have NEIDS. They change words into action for what is needed most to help a person overcome rough spots.
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.
P.A.N.D.O.R.A.org is a wonderful advocacy and education group specializing in bringing awareness to the neuro-endocrine-immune diseases. Almost all of those involved in this organization, suffer from one of these diseases. These people are dedicated, knowledgeable, and highly motivated in their work. I have Myalgic Encephalomyelitis (ME), commonly sometimes known as Chronic Fatigue Syndrome. It is one of these diseases. This organization has been in the forefront of education and advocacy about my own illness for several years. The support it provides for those of us with these illnesses is deeply appreciated by all of us!
I've learned that Pandora is a resource for people with illnesses like mine.
Information, referrals, and kindness go very far. I've come close to being their offers food delivery but haven't had to yet.
It's such a relief just to know it is there if I ever do need it!. I also received a quilt through the Covered In Love program. It came on a perfect day in a very sick and stressful time.
I'm so glad they're there to help both the newly disguised and those of us who've been sick for too many years.
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.
I have many neuroendocrineimmune disorders, i.e. ME/CFS, FM, Interstitial Cystitis, Sjogrens, and others. I so admire the wonderful folks at PANDORA for their hard work, caring and support for patients with NEIDs. I have observed and participated as I have been able in their many advocacy efforts. They strive to spread awareness, advocate, educate, support patients in various ways, and promote research. One of their most important endeavors is physician education. Thank for all that you are doing for our "invisible" illnesses!
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.
When I first became ill, I really had nowhere to go for information. Then I was directed to PANDORA ORG. The information is up-to-date and very informative about my own illness as well as many other neuroendocrineimmune disorders. This organization sends people to CDC meetings and FDA meetings as well as other venues where more support and help is needed to keep these organizations aware of patient's needs.
The patient is kept well informed of what progress is made as far as government research and physician education is concerned. Pandora Org is all volunteers so there is no worry of funds being misdirected or misused. Every thing is for the patient. Their website shows just hard they work and there is so much information there.
Patients can ask questions and are given up to the minute information and support. The voice of the patient is heard and conveyed to the government powers that be.
Pandora Org started out small, but has grown to a national level with members all over the U.S. Even people in other countries can come onto the website or Facebook page to offer support or ideas and collect the same.
Pandora Org offers HOPE!
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 Org is a wonderful organization that helps our patient group in so many ways. For those who need information about their illness, they can find valuable information that they can also share with their doctor. PANDORA Org works to educate medical professionals about diseases that are often misunderstood. PANDORA Org's national efforts to help patients and advocate for them is invaluable. I am amazed at the many ways PANDORA Org serves our patient group!!! Thank you PANDORA for your work for our patient group!!!
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!
P.A.N.D.O.R.A. serves an estimated 20 million Americans affected by Neuroendocrine Immune illnesses. These illnesses include ME/CFS, Fibromyalgia, Multiple Chemical Sensitivites, Gulf War Syndrome, and persistent Lyme disease. The organization serves as an advocate for those suffering from these illnesses by helping shape public policy and supporting education and research. They are currently working toward the establishment of a clinical and research facility in New Jersey, the NEI Center. Their ability to bring people from different groups together has been impressive. Although they are a small organization, they were successful in getting other groups to vote for them in the recent Community Chase Giving Contest and won $20,000. The prize winnings will go largely toward the NEI Center. Their motto is: "ONE VOICE, ONE COMMUNITY, ONE CAUSE." Their dedication, enthusiasm, and "I Can!" mentality inspires everyone and gives hope that we will find ways to alleviate the suffering of those with NEI illnesses.!
Review from Guidestar
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.