Thursday, May 8, 2014

Letter writing time

I know that finding doctors (except our experts) to help diagnose, treat is a devastating ordeal for most of us! I lived through it too! It is profoundly disturbing and surreal to watch most of our medical community, not only dismiss our disease but ridiculing and not believing us that this disease is real (not in our heads), serious, and very debilitating.

I would like to recommend (for patients that have the strength) to submit your stories to IOM (even if you don't agree ...with this initiative but it will show them that this is a serious issue) and to especially CFSAC. Below are contact names:

Sorry, I don't know who the key players are in other countries, please feel free to add them in the comments or I can edit this post and add them.

Another idea is that I wanted to do is collect these stories (still trying to find an easy way to collect the stories that we can use for advocacy efforts where patients would feel comfortable providing the information such as a website that you can simply copy and past your letter - ANY OTHER IDEAS). The stories will need to explain as best as you can the situation/outcome, include your name or ANONYMOUS but include years sick, where you live city, state, country definitely include all your experiences if you can).

Thank you for your time and look forward to your comments!

1 comment:



Permission to repost. Edit as you see fit.
Dear Congressman xxxxx,

As your constituent, I am outraged with the lack of funding for research/services of Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (ME), often erroneously referred to as "CFS/ME."

CFIDS and ME are acquired multi-system illnesses adversely affecting the heart, brain, immune system, nervous and circulatory systems -- including post-exertional malaise and neurological/cognitive manifestations.

End Stage CFIDS is often referred to as "NON HIV AIDS."

Suspiciously, "NON HIV AIDS" cases started to present in scores in 1992 -- in tandem with the *very mysterious* "Gulf War Syndrome."

Research to help people suffering debilitating illness from NON HIV AIDS, who are often homebound and bedbound, received a measly $6 Million in federal funding last year, while perfectly healthy HIV+ people received $3.1 Billion....