PATIENT ALLIANCE NEUROENDOCRINEIMMU DISORDERS ORG FOR RESECH & ADV INC
October 29, 2010
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.
I've personally experienced the results of this organization in...
Making numerous new friends from many places. Having somebody to share my difficult times with. Or just knowing they are there if needed. I have been able to compare my own level of illness with them knowing they will not ridicule me for whatever various reasons. We all know. We all understand. And mostly, WE ARE NOT ALONE.
Ways to make it better...
If I had to make changes to this organization, I would...
Make this website the #1, top of the list on Google and Yahoo and every other search engine.
Client Served & I have been interviewed by my local tv news team re: CFS. I have brought in printed out information to my internist who has treated me since 2004. Paperwork regarding Sarah Myhill of the UK and her beliefs that the mitochondria within our DNA calls were.