My local support group at the time (20 years ago) made up educational pamphlets and provided them to heath care providers to put in their waiting rooms. This must have been a huge help because when I've called clinics over the years they are aware that it exists.
My family doctor who only sees me once a year is "in the know" on recent updates of ME. She was even aware of XMRV at the time it was on the front page. I was shocked she even heard of it.
My opinion is that "personal stories" are not that helpful when the majority have no clue what ME is.
It's so good to hear your doctor is doing that. Statistically, she is in a small minority. At the moment I am focussed on an effort to bring pressure on the leaders of the medical establishment, to require more doctors to act like yours, who sounds exceptional.
The stories were originally for President Obama's White House specifically. Obama was an activist orgnaizer in Chicago and there is a school of activism there that became famous through their success in the sixties civil rights movement. They found then, and they teach now, the power of stories to move people. I was trained at the same school and know they work. If I cannot get stories, I will need some other way to show that I am not just speaking for myself. The poll above is very telling and will strenghten the case.
A group of leading ME/CFS doctors such as Kenny DeMeirleir and Nancy Klimas and Daniel Peterson got together and wrote the Canadian consensus Guidelines for diagnosing and treating ME/CFS, and the first two rules of treatment are:
1) Patient Support and Well'being Are the Top Priorities
2) Initiate education of the patient, their family and support network.
In the present climate, that sounds ridiculous, because as was pointed out, doctors generally are in no position to educate anyone on his illness. They aren't even educated on it them selves. This is what I'm aiming to get changed.
I also think they need to be persuaded to diagnose us! Even the CDC estimated that 80% of us are not even getting diagnosed!
So, many thanks to all who've taken the poll, the more who do, the stronger the point.