I know that many of us are bedridden and severely ill and cant do much to change things, but in general I don't think acknowledging the pace of research being inadequate realistically is "gloomy". Because people can change the pace of research by demanding government funds research. All it would take is fifteen people going into the NIH and blocking the doors in some kind of coordinated protest, somehow get media to cover it with some kind of tip to the press or other theatrics, to get the ball rolling.
No hope in our lifetimes unless something changes. There may be people that will fight for the change more effectively. It seems like most ME/CFS orgs, even the really good ones, are focused on the "inside" strategy of lobbying, talking to people in congress--yes there are protests, once a year, but not very vigorous protests. Again, all that would have to change is some aggressive protests in congress or nih buildings... that happen to get picked up by the media
Hi all, I for one have been motivated by
@debored13 's call for action to write my first post, after lurking here for the two years since I started suspecting ME/CFS and got diagnosed. You can check out my intro post here:
https://forums.phoenixrising.me/threads/still-processing-in-boston-and-nyc-former-lurker.75698/ 
I agree wholeheartedly that more aggressive direct action, within a social movement model of community organizing, is the fastest and most certain way for us to accelerate research findings exponentially. It could also increase public awareness and understanding to a level that would transform our interactions with doctors, employers (when applicable...), families, loved ones, etc. (Imagine people just "getting it" when you tell them you have ME/CFS like they do when you reveal a cancer or MS diagnosis!)
I've got some thoughts on this front, particularly drawing from the PhD research into AIDS art and activism that I was doing before having to take a medical leave of absence last summer (which may unfortunately lead to dropping out officially if things don't turn up soon for me).
I do agree about the activism though, but I think unfortunately the best most people with ME can manage is a lie in protest in their own room.
Even though many of us, myself included, cant imagine having the energy to rally or protest or occupy spaces, let alone plan a mass action using these tactics, I think we should focus on what we *can* do to initiate and move forward such an agenda. Starting with some online brainstorming within this community of smart, passionate, caring, and multi-talented people! Let's start throwing out ideas (maybe in a new thread) of actions we *can* imagine ourselves taking (with some able co-conspirators) that could still have the same kind of resonance as more physically active forms of direct action. If we're creative, I think we can turn our inability to be physically present into a symbolic testament to our condition, along the lines of the #MillionsMissing campaign with the empty shoes which I think is a great starting point for conceiving of some more confrontational and disruptive (and thus attention-demanding) tactics.
One image I have in mind, admittedly on the more radical / logistically complicated fantasy side, is of burning a set of mattresses outside a relevant building at a relevant time--Congress on ME/CFS awareness day? NIH during a budgetary meeting?--to represent how we are wasting away in bed, often in agony, while the broader community is unaware and/or not doing anything about it. Assuming firefighters would put them out fairly quickly, that itself could become part of the intended action, showing the contrast between that appropriate societal response to a public threat--respond quickly and powerfully (via fire control) to prevent a major public health crisis--versus the languid and feeble governmental approach to seeking a solution to ME/CFS.
Another idea, equally logistically complicated but a bit less dangerous/illegal(?), is playing off the AIDS memorial quilt project, but with each patient decorating a mattress instead (the symbol that keeps coming to mind given how much time I spend there!) with everything in their life they have lost or given up or never achieved. It could symbolize how it can feel like we are in a state of "living death" where we are having to mourn and grieve our *own* former and potential lives/selves, instead of those of deceased loved ones, from the confines of a mattress. People with ME/CFS could decorate and contribute their testimonial mattresses (or more realistically, pieces of cloth that look like mattresses, or perhaps bedspreads) on their own time-frame, and then we could spread then out on the Mall in Washington (and elsewhere around the country/world, apologies for my US-centrism!) at key moments in a direct call-back to the AIDS quilt, since we hope to replicate the kind of research funding and advances AIDS activists won through direct action.
I admit this is pie in the sky dreaming, and will say that I can't imagine personally doing the work to make anything like this happen! Personally I am a better instigator/brainstormer/planner than doer, and of course all of us have severe energy and capacity and resource limitations. But my past experiences in organizing have taught me that great things are possible when many people pitch in in whatever small or large ways they can, especially when you link up with individual and institutional allies, and I think that within the vast and increasingly organized ME/CFS patient and activist and ally community there are enough of us with enough life experience and professional contact networks and latent talent/skills/passion/etc that we could collectively shepherd something like this from brainstorming to plan to promotion to execution... all in baby steps.
Especially if we start out with more realistic, smaller-scale projects like say staging a lie-in somewhere on air mattresses, for those who are well enough and have someone who can transport them and an air mattress to the site. At the very least, we can start putting some ideas out there and see what happens!
Thanks to those of you who made it to the bottom of this very long post, and I hope some of you will join me and
@debored13 and anyone who has already been thinking or working along these lines in starting to amass ideas and possible resources and plans for at some point taking action that the government and media and general population cannot ignore!
