Choline on the Brain? A Guide to Choline in Chronic Fatigue Syndrome
Discuss the article on the Forums.

New US Action Working Group Formed

Discussion in 'General ME/CFS News' started by Mark, Dec 22, 2015.

  1. Mark

    Mark Former CEO

    Sofa, UK
    Over 20 US organizations (including Phoenix Rising), bloggers and independent advocates are coming together to form a US Action Working Group, hosted by #MEAction - the announcement letter is below. We're delighted to be a part of this exciting initiative, and we're keen to maximize the involvement of our membership in the group's watch out for more on this in the New Year...

    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 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:


    Patient Organizations
    Connecticut CFIDS Association, Inc. 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
    Sonya Heller Irey
    Robert and Courtney Miller
    Donna Pearson
    Staci R. Stevens, MA
    Steve Krafchick, MPH, JD
  2. Mark

    Mark Former CEO

    Sofa, UK
    I just want to add to the official announcement that I'm incredibly excited by this initiative, because it's long seemed to me that if our entire community had a way to come together and identify all the things that we all completely agree on, then there is nothing that could stop us from achieving those goals. It seems to me that, in the US at least, the time is right, and this group is going to provide the means for the community to work together effectively. This has been a long time coming but I think as a community we are finally at that point. Just in the nick of time, because the opportunities opening up now in the US are absolutely unprecedented and we must grasp this opportunity with both hands.

    This is a US initiative, focused on US policy, and accordingly I believe it's essential that our representative on this group should be a US citizen. Perhaps I will slink away into the shadows after I post this, but if there's one point I do want to stress above all else on the dawn of this initiative, it's the power of unity. We only need to look at how eager some people are to paint us as a community divided to realize that unity is powerful - and that it is feared. The task before us is to find our "highest common factors": all those things that we can all agree on, which all of us who really care about the millions of ME, or CFS, or ME/CFS, or CFS/ME, or SEID patients, worldwide, can get behind with all our collective weight - and push and push and push together until it happens. And those areas of common agreement will be so easy to find, once we start thinking seriously about it together.

    I have posted the following video here several times before, but I'll post it again because today it seems more appropriate than ever. Unity is powerful. It's a song from the UK, it's from another time and another place, and some of its references are now obscure, but I offer it in the hope that it may inspire us all to work together, to rise above everything that divides us, and to focus on what unites us.

    catly, A.B., Simon and 7 others like this.
  3. Wildcat


    MEadvocacy Statement Regarding the Creation of the US Action Working Group

    Posted by Gabby Klein 79.60sc on December 22, 2015

    Today an announcement went out about a new US Action Working Group which has been formed with the intent of increasing impact in advocacy efforts, with allowance that some of the group’s members can opt in or out of different projects. MEadvocacy was recently invited to join this group.

    Our advisors spent several days in communication with the organizations and individuals clarifying the plans involved in defining this group. After much deliberation, we decided we will better serve the ME patients that we represent by continuing as we have in the past, therefore we opted out of the group.

    We will continue with our stated mission and pursue our declared goals of advocating for ME criteria (CCC or ICC or better) to be used for diagnostic and research criteria in the US, as well as urging the NIH to fund ME research to the order of $250 million a year which is commensurate with other similarly burdened diseases. This has been our direction from the start; being a voice for the myalgic encephalomyelitis community, with a strong focus on the severely affected.

    JayS and RustyJ like this.
  4. lnester7

    lnester7 Seven

    I think the biggest challenge right now is if the PACE does get retracted, we need to be ready to provide a treatment plan and disseminate to all Doctors and Universities, something simple like the ICC treatment guide or a short:
    1) Treat Sleep if needed
    2) Treat active infections and reactivations.
    3) Pain Management,
    4) OI management,......

    Something short and sweet so doctors do not get overwhelmed.
  5. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia
    Machiavelli wrote about this. No government can survive without the will of the people. That will can be manipulated, subverted, divided, but once united governments fall. It does however often require something dire to trigger it.

    The same is probably true for smaller issues. We also know from recent political rallies around the world that nonviolent change is possible. Working within legal means, but with unity and scale, what we are looking for is not only change by our action, but triggering a desire for change in a wider group, perhaps led by our example.

    We currently see this in the PACE affair. We spent four years dissecting this study, and disseminating results. David Tuller investigated for a year, then published in a well respected science blog. All of a sudden a wider scientific group got interested, and now ... well, next year is going to be interesting.

    Triggers like that in wider groups, and petitions run through large online petition forums (not just our private ones) ,may raise wider awareness.

    One of the arguments I see raised from time to time is that advocates do not represent the ME or CFS communities. The larger the organization we have for advocacy, the weaker this argument becomes.

    If the NIH carries through with its pledge to make ME/CFS a bigger priority then we need more united advocacy to interact with the NIH, to help push it forward.

    I do not think it matters too much that many of us are non-US citizens, though I do agree that primary contact with NIH etc.should be.

    One thing I think we need, and now might have the capacity to do, is a centralized ME and CFS media hub, to disseminate information to journalists. We have to counter distorted media releases from other places, and offering journalists a one stop place, and then work to ensure that most media outlets are aware of this, will work in our favour over time.
    Last edited: Dec 25, 2015
    Valentijn, Bob, Jennifer J and 3 others like this.

See more popular forum discussions.

Share This Page