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 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.