I take the responsibility of advocacy very seriously, and collaborating with others is part of my philosophy. This effort is an organic evolution of work by many other advocates that have come before us.
More than ever before, 2015 has been a year that has brought fresh hope to Myalgic Encephalomyelitis (ME) patients. The Institute of Medicine (IOM) and NIH Pathways to Prevention (P2P) reports confirmed the neglect and disbelief that have held the disease hostage for decades and strongly recommended action to improve patient care. Publications from Stanford, Columbia and Haukeland (Norway) Universities brought new insights into the biology. World-renowned scientists have joined the fight. Stories about severely ill patients like Ron Davis’s son have created more public awareness. And the Tuller series brought greater exposure to the concerns with the PACE trial and psychogenic theories.
For the first time, there’s a sense that we have huge opportunities to change the future for ME patients. And just as importantly, there’s a sense that if we want to turn those opportunities into reality, then we need to find new ways to work together across the community to increase the impact of our voices.
To that end, a number of organizations, bloggers and independent advocates, listed below, have started having discussions to identify those areas where they can agree on goals and work together to achieve what is needed for patients.
Thus far, we have identified common goals to focus on, including the need to dramatically increase funding, to advance the research agenda, to resolve the definitional challenges, and to improve clinical care through quality medical education. We expect that this will lead to actions directed toward Congressional leaders, HHS and its agencies, and public awareness through the media.
To achieve these goals, we are going to need broad participation across the community. We will leverage the Groups feature on the MEAction.net platform to get input on these goals and to share proposals for joint actions. Because we are working as a loose collaboration, groups and individuals will be given the opportunity to opt in or opt out of specific actions.
Working in this way and at this scale is new for all of us and we will be learning as we go. We also know that we won’t all agree on every tactic or policy direction. But we believe there is power in numbers and coordination and are all committed to taking advantage of every opportunity that we can to regain our future.
Please join us and share your ideas and enthusiasm. If you are interested in participating and providing input, you can join in the discussion on MEAction Groups here: http://www.meaction.net/us-action-working-groups/
Signed:
Patient Organizations
Connecticut CFIDS Association, Inc.
ImmuneDysfunction.org dba The Vermont CFIDS Association, Inc
Massachusetts CFIDS/ME & FM Association
The Myalgic Encephalomyelitis Action Network (#MEAction)
Open Medicine Foundation (OMF)
New Jersey ME/CFS Association, Inc.
Pandora Org
Phoenix Rising
Simmaron Research
Solve ME/CFS Initiative
Wisconsin ME and CFS Association, Inc.
Patient blogs
Health Rising (Cort Johnson)
OccupyCFS (Jennifer Spotila)
Onward Through the Fog (Erica Verrillo)
Race to Solve ME/CFS (Claudia Goodell)
Speak Up About ME (Denise Lopez-Majano)
Independent Advocates
Lily Chu. MD, MSHS
Mary Dimmock
Steve Krafchick, MPH, JD
Robert and Courtney Miller
Donna Pearson
Staci R. Stevens, MA
When my mother died, I could not sculpt words around my grief. Even several months later, I still could not express how grief felt to me.
Long Term Disability Insurance/ERISA
If you are fortunate, then your employer provides you with disability insurance. When you become disabled, this insurance pays you a percentage of your salary, and you are not solely dependent on Social Security Disability.
In real life, it is never that simple because insurance companies try to avoid paying out too much in benefits, especially for severely disabling, chronic diseases with no treatment such as ME/CFS. There is a very complicated world of government regulations and case law that govern these policies and are supposed to keep things “fair.”
The Department of Labor has now proposed new regulations that will strengthen protections for disabled workers, and require the insurance companies to play more fair. The public comment period closes on January 19th, and you can be certain that the insurance companies are opposing these changes.
I’ve been too sick, and we’ve had several new family crises this month, so I have not been able to do much work on this. However, Jeannette Burmeister has done a fantastic job explaining the proposed changes and making suggestions for public comment over on her blog. I highly recommend you check out her three excellent posts on the subject, and then consider submitting a comment yourself:
Summary of Proposed Regulations
Sample Public Comment
Additional Guidance on Commenting