Give your feedback on the #MEAction USA protest demands!

Note: the deadline has been extended until next Friday, August 12!
We are soliciting feedback from the entire community on the #MillionsMissing US Protest Demands, which were drafted last spring for the May protest. You can read them in full here:
The goal of this process is to revise the demands and adopt them as a platform that reflects the policy demands of those Americans who engage in the #MillionsMissing movement. While we know we can never speak for the entire community, we aim to speak for the majority by engaging in a democratic decision-making process.
The process for revising the demands is as follows:

  1. We distribute a survey asking for open-ended feedback on the four sections of the demands
  2. Based on this feedback, we design a survey that asks people their preferences on key issues
  3. We organize a public Bluejeans meeting in which we discuss both the qualitative and quantitative feedback
  4. Based on all of that input, we draft a final set of demands that is then put before the community for a yes/no vote

By commenting on the four sections of the protest demands, you will be participating in the first of these four steps.
Each stage of the process will be announced in the #MEAction USA Facebook Group, the #MillionsMissing Organizers Group, the #MEAction Facebook Page, and the #MillionsMissing Google Group:
[email protected]
Thank you for your participation! If you have any questions, please email [email protected]
Click the button below to provide feedback on each section of your #MillionsMissing protest demands!
[button_color url=”” content=”Demands Feedback Form” target=””]  
DEADLINE: EXTENDED to Friday, August 12th, 2016


6 thoughts on “Give your feedback on the #MEAction USA protest demands!”

  1. The demands of MillionsMissing were prepared and made public (without input from the community) for the protest before May 25, 2016.
    More than two months later, MEAction is sending this notice on August 1st soliciting input from the community – of mostly moderately to very severely sick patients for whom an effort like this is taxing if at all possible, with a deadline of August 5. (4-day timeframe)
    I don’t think that this is an appropriate time frame for very sick patients to read, analyze and compose recommendations for edits or additions to the demands.
    In addition, for the sake of transparency, I would hope that whatever input/e-mails MEAction receives on this subject will be made public for all to see.

  2. I agree with Gabby. I understand that the original demands were drawn up in a hurry by committee and I don’t believe in any way that there was any ill intention in the way it was done as a private group as opposed to an open group which allowed for critique, discussion and input at any point previously from the community. I believe that it was done that way to be expeditious and I did notice the other day that in one of the previous posts there was a comment requesting feedback, so there was at least an opening for public comment earlier than this past week.
    None of us are perfect; we’re all works in progress and I do think that we are all appreciative of every single effort made on the behalf of the entire ME/CFS community. I do have concerns and comments and I do feel as though they need to be heard and preferably addressed. It is especially scary for us as patients who have been sidelined by the government, insurance companies, physicians and many other institutions and individuals countless times. So we are a bit hyper-sensitive about whether our voices are being heard and how we can effectively make things better for others who are in the same predicament we are in. So please, don’t feel upset by the statement and request; understand and let us know how we can help ensure that we truly are a community represented.
    I have felt a handful of times as though statements and decisions are being made which don’t reflect how I believe the ENTIRE community feels and I’ve been frustrated when trying to find a way over the wall to be able to have some sort of a PUBLIC discussion. I don’t want for this to come across in any way as criticism or lack of gratitude, but it is indeed a concern. I also fully understand how difficult it is to respond and how hard it is to be able to share the responses publicly as every effort is incredibly draining. However, I do feel as though the sharing of the community voice is imperative.
    I have several concerns I want to be able to share and discuss with the community. I don’t have any idea how to do that, where I might find other’s thoughts and receive feedback on my input. It’s very quiet here in my house where I’m all by myself and mostly homebound. It would be nice to know I’m not talking to myself and that my voice makes a sound.

    1. It sounds like you have ideas and want to make them work. Great! 🙂 We have had many meetings about the protests so far; you could definitely come to one of those meetings, if your ideas have to do with #MillionsMissing. Check out under ‘events’ for when these calls take place. If you have something to discuss that does not have to do with the protests, or if that sounds somewhat intimidating, you could also send your ideas to [email protected].
      If you feel you have the requisite experience, you could aim for being part of the Protest Steering Committee. I know that they’re still looking for volunteers.
      If you really just want a sounding board for bouncing ideas back and forth in a way that’s open and visible to the public, try posting on discussion boards like Phoenix Rising.
      If you have a point that you’d like to make, and you’d like the community to see it, consider posting an opinion piece to #MEAction itself. You would do that through
      Thank you for commenting!

      1. Perhaps it was my miscommunication and I didn’t make it clear when I said that I agreed with what Gabby said. I have comments and concerns regarding the Millions Missing Protest Demands which I would like to be able to share and discuss publicly. I don’t want for the comments I submit with the survey to disappear behind closed doors and not be shared with the community.
        I would think that sort of information/discussion would/should take place here as opposed to elsewhere. I’d also like to read my fellow community members comments and concerns as well as weigh in on the discussion without having to be a part of a committee. I don’t understand why that part has to be done in a committee setting, especially if it’s supposed to be representing an entire community. There are many reasons why it’s preclusive to segment this sort of thing up into smaller groups, relegate the discussions to specific times and behind closed doors.
        I don’t know about you, but it takes me significantly longer than most people to do anything. I generally have to start and stop several times. Something such as writing a comment isn’t done in one sitting and I’m unable to process thoughts well enough to be able to respond to points in real time. A phone conversation or in-person meeting is usually not very productive for me whereas an open written discussion dialog in which the main subject is posted and then people are able to post conversation and responses if and when they are capable is the best way to have an in-depth conversation and share information with me. And since we’re purporting to represent an entire ME/CFS community, if discussions were handled similarly to that, it would be transparent, there wouldn’t be issues with comments being ignored or minimized and we could be sure that the entire community was being represented or at least whomever is aware of MEAction and capable of responding at all, which are still two large issues in themselves.

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