Archive for May, 2015

May 12th is ME Awareness Day

We have endured more than 30 years of neglect, dreadful stigma, and woefully insufficient research funding for this horrid disabling disease.

One day for awareness doesn’t seem like enough to make enough of a difference in the current (inappropriate) status quo. We need a significant change!

I think we need a lengthy, aggressive awareness campaign as part of an intensive overall of policy regarding this disease.

Some thoughts on what an awareness campaign might entail are detailed here:

http://www.occupycfs.com/2015/05/05/awareness-reboot/

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Stop mistreating ME

Mary Dimmock and her son have produced a valuable resource for us.

Mary explains the origins and significance of this resource:

Five years ago, I was working in the pharmaceutical industry when my son fell victim to myalgic encephalomyelitis (ME). Overnight, everything I understood about medical care and about how diseases are researched and treatments developed was suddenly turned on its head. This wasn’t medicine or science as I knew them but rather medical disbelief and disdain and a quagmire of conflicting and irreconcilable disease labels, definitions, theories and research findings. My son’s life and his entire future was and is being held hostage by a parade of biases, disinterest, personal agendas, politics and sloppy science that had been going on since before he was even born.

The bald fact is that in the last thirty years, HHS has not only failed to produce a single meaningful outcome for patients but has turned ME into a pariah. We need a sweeping reboot of every single facet of HHS’s public policy toward this disease.  But HHS has been unwilling to make any meaningful changes, let alone the magnitude of changes needed in the timescale needed to address the damage that has been done.

To change the future of ME patients, we have to change the politics and the public perception of this disease. We need to break down the walls of confusion and misinformation that have buried ME. We need to find new ways to tell the shameful story of what has been done to ME patients.

With the intent of providing a tool to help with such efforts, my son and I compiled a detailed, referenced document titled Thirty Years of Disdain: How HHS Buried ME. This document is intended to bring together in one place key events in the story of HHS’s failed public policy toward this disease. 

The resulting document is long, making it more suitable as a deep background reference. We are creating shorter, targeted pieces to focus on congressional leaders and the media. The community is welcome to use it if it’s of benefit in their advocacy efforts.  The document can be accessed at http://bit.ly/The_Burial_of_ME.

Comments are welcome and can be sent to medimmock@gmail.com. I will do my best to respond.”

Many thanks for Mary and Matthew!