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.
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.