PATIENT ALLIANCE NEUROENDOCRINEIMMU DISORDERS ORG FOR RESECH & ADV INC
October 31, 2010
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.
I've personally experienced the results of this organization in...
it helped my daughter and gave me information and an avenue to pursue further action
Ways to make it better...
If I had to make changes to this organization, I would...
cooperate with other groups and any organizations necessary to develop a data base of all cfids/me patients. There is political and financial and intelectual strength in numbers and organization. Find a grant writer to get a grant to develop the database.
Volunteer & joined.