BOLD ACTION is a Commitment to Healthcare Justice for People with ME

BOLD ACTION to me, means mobilizing our community to publicly demonstrate our deep and intense—as opposed to shallow and passive—commitment to seeing healthcare justice for people with ME. It is about bringing our issues to the forefront of public consciousness and putting strong pressure on our leaders to act. Taking BOLD ACTION is both a pragmatic tactical tool for building the people-based power of our movement, and it is the vivid demonstration of the too-long hidden crisis of our lived realities.

That is why I am asking you to donate today to fund this type of BOLD ACTION! We greatly need your support! Since the launch of our $26K (£22K) match on Friday, we are now over 40% to our goal! All gifts made today will continue to be doubled–help us get to 50%!

BOLD ACTION shows up in my work with at the federal level and in our successes this year as this fall we brought the movement for the #MillionsMissing to White House. We got national press attention for our protest and civil disobedience that provided a timely push back on the president’s narrative that the COVID pandemic was over, and we called on Biden to declare ME and Long COVID a public health emergency. 

In preparing for this action I had to personally confront the question, “Am I willing to physically put my body on the line and risk getting arrested for what I believe, for what I say I’m fighting for?” For me and many other ME and Long COVID activists the answer was “Yes!” After many months of planning, it was an incredibly moving experience to take this collective action together and to see the public reaction it generated.

Ben laying on the cement in a red shirt and white facial mask. Holding a protest sign that says "You Can't Ignore ME Now"

All of our inside advocacy over the past year to federal agencies on a range of issues was done, mindfully, that we were also building to this moment of visible confrontation outside the corridors of power. We knew a single protest would not immediately achieve everything we wanted to change, but we knew it could be an on-ramp to launch us on a real path to building power for this movement.

BOLD ACTION is important to #MEAction’s work because the “why” of bold action is straight-forward: we must do it to build the power of our movement. For decades our community has lacked the power to force the critical changes from the government, healthcare, science and society that would lead to all people with ME getting support and access to compassionate and effective care. The only way for chronically ill and disabled people out of this vicious cycle of neglect and harm is to take back our agency and demonstrate our commitment to disrupting the unjust status quo.

I know we’re in for a long fight, and there is no easy blueprint for success. In order to deploy ongoing, bold action I’m focused on how #MEAction can pioneer new methods and creative modes of activism that are accessible for our community and grounded in the reality of our lived experience. Now is a critical time to invest in expanding our capacity for organizing and collective action. 

This is my 17th year of living with the long-term effects of getting a virus and not getting better. I’m still sick, still fighting just like so many others. We refuse to resign ourselves to a world that ignores and marginalizes the chronically ill and disabled. We are resilient, and together we will win.

Please give today to support our BOLD ACTION strategy ahead! All gifts will be doubled!

I am excited to see where this BOLD ACTION takes us next year and I continue to be excited to work alongside some of the most amazing activists and volunteers who greatly support our federal work!

STAY TUNED: A New BOLD ACTION Announcement Coming Soon!
Keep on the lookout for an announcement in the coming weeks with information on a new BOLD ACTION we will be taking and how you can participate!


Latest News

a multi-water colored image with the words, Severe ME Artists Project 2024 in white font outlined in black. the meaction action logo in the bottom right hand corner.

Severe ME Artists Project 2024

Quick Overview: Submit one piece of artwork – image, writing, or video Label your artwork with your name as you want it to appear, an underscore, and the number of years with severe ME Example: Lastname_FirstName_14 FirstNameOnly_ No copyrighted material If you are submitting a video, it must be under two minutes. Submission due by

Read More »
Light blue square with rainbows in the top left and bottom right corner. In the middle are the words, -Pride is Valid- No Matter How One Celebrates or Experiences It. #MEAction Board Member, Jennifer England, shares her views on Pride. The #MEAction logo in the top right corner.

Pride Is Valid No Matter How One Celebrates or Experiences It

In honor of Pride Month, #MEAction is sharing a heartfelt message from our board member, Jennifer England, about what Pride means to her and her wife who lives with severe ME. My wife and I have both been queer our whole lives, but in the 70s that was the quiet part you didn’t say out

Read More »

Questions to Ask Prospective MPs About ME/CFS

In the next few weeks, candidates will be knocking on doors seeking votes for the upcoming UK Election. It’s important that candidates from all parties are made aware of the challenges facing people with ME and Long Covid. It can be a little daunting to be unprepared so here are some questions you might want

Read More »
Scroll to Top