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!

Crimes, criminals, and the need for justice

The “crime” we are faced with is that

HHS has ignored us,

HHS has ignored CFSAC,

HHS has refused to develop a strategic plan for ME(cfs),

HHS has refused to openly and honestly engage with us and

HHS has secretly developed and made arrangements for the IOM study.

The common thread here is HHS.

And yet, it feels as though ME(cfs) advocates and patients are accusing each other of being the “criminals” rather than focusing on HHS.

If we let HHS divide us into tiny factions pitted against each other, HHS will definitely “get away with” their crimes against us.

It is important to remember who the “criminal” is here.

We should choose instead to focus our grievances, energy and actions on addressing HHS’ “crimes” and doing everything we can to achieve justice for everyone affected by ME(cfs).

Had HHS had an engaged, and open relationship with us before now, the news on Sept 23^rd 2013 from the CFSAC ListServ about the IOM study (“We are pleased to announce that the Institute of Medicine (IOM) will begin conducting a study on Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome this month…..”) might have been a nice surprise present.

Instead, coming on the heels of so many recent instances that have added to the ME community’s distrust of HHS, it is difficult to have trust and confidence that HHS has our interests at heart. (https://speakupaboutme.wordpress.com/2013/09/27/hhs-strategic-plan-goal-number-4-not-implemented/ )

HHS Strategic Plan, Goal number 4? Not implemented

HHS has a strategic-plan which it updates every four years. Goal # 4 of the current plan (2010-2015) is about increasing efficiency, transparency and accountability of HHS programs.

Part of Goal # 4 reads as follows (emphasis added):

“HHS also embraces the power of Open Government, recognizing that with openness comes responsibility and accountability for results. Through Open Government, HHS is promoting transparency, participation, and collaboration—vital enablers of success in the HHS mission to improve the health and well-being of all Americans. 

HHS’s Open Government efforts will break new ground in enabling the public to give feedback to HHS programs. HHS can help stakeholders contribute knowledge and experience to help it do jobs better, and HHS can support new kinds of collaborative teamwork that will deliver better results for our citizens.  HHS will move forward toward new strategies, new tools, and a new culture of public participation and collaboration in its affairs.” http://www.hhs.gov/strategic-plan/goal4.html

We are currently three-quarters of the way through 2013, so one would assume that the strategic-plan begun in 2010 would, by now, be close to completion.

Yet we have been provided no evidence of HHS engaging with ME stakeholders so that our knowledge and experience can help HHS do its job better.

In addition, one can only assume that HHS’ mention of collaborative teamwork only refers to HHS and does not apply to stakeholders because again, we have no evidence of collaborative teamwork between HHS and the ME community.

The reference to “a new culture of public participation and collaboration” is interesting in that the HHS culture actually seems to be one of increasingly LIMITED public participation and collaboration, rather than MORE public participation and collaboration between HHS and the ME community. As such, it is difficult to understand how limiting public participation and collaboration leads to a more transparent, participatory and collaborate environment.

Had HHS had an engaged, and open relationship with us before now, the news on Sept 23^rd 2013 from the CFSAC ListServ about the IOM study (“We are pleased to announce that the Institute of Medicine (IOM) will begin conducting a study on Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome this month…..”) might have been a nice surprise present.

Instead, coming on the heels of so many recent instances that have added to the ME community’s distrust of HHS, it is difficult to have trust and confidence that HHS has our interests at heart.

This very worthwhile post on Occupy CFS http://www.occupycfs.com/2013/09/26/trust/ has a time-line of some of HHS’ “mis-steps” this year, and more details about some of the recent instances contributing to MEcommunity’s mistrust of HHS.

 

 

FDA FAQ link

FDA has posted an FAQ about the April 25/25 2013 meeting: http://www.fda.gov/downloads/Drugs/NewsEvents/UCM345237.pdf