Hello, David! Sorry I haven't responded sooner. I have been busy drafting a survey and trying to figure out the best way to get it out there. I might set it up via a dedicated Facebook page, not sure yet. I'm also studying for exams, so I'm trying to make sure I don't get so enthusiastic about this project that I flunk out of school, LOL!!!
The most discouraging common denominator I'm seeing here is the lack of appropriate care from the medical professionals...I can't grasp how any doctor could just brush this off and not be so intrigued that they would TRY to learn more about it. I know a few docs who are so disgusted by the current standard in medical practice (like being so overloaded that they can only spend an average of ten minutes per patient) that they have left the mainstream to set up small private practices wherein they can be the doctors they dreamed of being...I personally am going the naturopathic route, because I refuse to become a slave to Big Pharma, and want to HEAL people, not suppress their outward symptoms.
I have spent hours digging through this discussion board, and my heart hurts for all of you! I even spend every night DREAMING about this, and wake up thinking I've found the answer, only to realize it was a dream. :( SOMEDAY!!!
David said:
Hi Jeannette
My wife [Cindy Lou] & I are very excited by your interest in getting to the bottom of 'Why ES?' My wife has been struggling with ES symptoms for 5 years+/-, & also struggling with the medical system's response to her plight. For the most part, little interest has been demonstrated, by many of the practitioners she has seen, to grapple with the unknowns of her condition. On occasion, writing her symptoms off as "psychological" was a fall-back...hear that often enough, added to the persistent & agonizing pain, & one tends to develop "psychological" symptoms - depression, hopelessness,.... This experience seems similar to that described by many others in this community.
We do hope you are able to post a survey - my wife is very keen to respond.
Meanwhile, best wishes in your efforts to help your sister with ES
David