I just wanted to take a moment to comment on some of the confusion and concern of these last few weeks and offer some steps forward to help clarify how #MEAction works, what our core value are, and how we plan to make concrete our policy positions going forward.
We are not a traditional organization. Yes, there are organizations that have come before us and have been touchstones: participatory, distributed organizations like ACT UP, TED’s TEDx program or 350.org. But I am pretty sure #MEAction is unusual, an organization with the ambition to organize and serve, lead and follow a global movement of disabled people fighting to change our lives. We wanted to give patients around the world a context and framework in which to bring together all of our skills and experience, learn from one another, and help each other to realize our ambitions, whether for self-expression, peer support, awareness or advocacy. Our organization from its inception was intended to be an ecosystem that anyone could contribute to and utilize; one which allowed for maximum experimentation and iteration; where diverse ideas could flourish, take wing, and if successful, be copied and propagate. Participatory, community organizations are inherently messy, organic and imperfect, but also have the potential to have power and impact far beyond the sum of their parts.
#MEAction has succeeded beyond our wildest expectations. Since our founding on May 12, 2015, we have grown more than 3X year after year by multiple measures. We have achieved so much together:
- Our #MillionsMissing protests grew from 12 to over 100 locations in just two years, with over 200 virtual actions;
- We launched the PACE petition, signed by 12,000 individuals, protesting the unethical PACE trial and worked with David Tuller to obtain three dozen signatures from clinicians and researchers for an open letter asking the Lancet for an independent review of the PACE trial;
- We lobbied Senators to introduce ME into the 21st Century Cures Act; 55 Congressional representatives signed our letter asking Francis Collins for funding for ME;
- On the heels of our US protests, we met with the US Department of Health and Human Services (HHS) Deputy Secretary that resulted in reforms to the Chronic Fatigue Syndrome Advisory Committee (CFSAC);
- NIH funding was increased which, while not even close to enough, is a testament to our community’s hard work and tenacity, and is in part because of the noise we are making around the world; we launched a survey with 1800+ responders and used it to craft our RFI submission to the NIH; We sent our letter to Francis Collins outlining steps the NIH should take to accelerate research and ramp up funding. It was signed by 7,000 patients and allies around the world;
- MEpedia hit over 4.8 million pageviews. We created a platform for news and events around the world and built resources for patient support, caregivers, as well as resources for science and advocacy;
- We launched BedFest, a virtual music festival, and Voices, a community literary magazine, to raise awareness and connect artists around the world;
- We helped grow and connect more of our community. Our patient support, social and local groups now count thousands of members;
- and more… and we couldn’t have done any of it without you.
With the 2018 #MillionsMissing, the Parliamentary debate, and the introduction of a Senate resolution — the last month have been a demonstration of the power of our model. However, it has also revealed some of its inherent challenges.
Both the US Senate Resolution language and the UK Parliamentary Briefing broadly represent everything we are fighting for and agree on as a community. However, they also contained some language that raised legitimate concerns. In both cases, an ideal process was cut short because of the fast-moving nature of legislative work and the limits of our staff capacity.
By contrast, the letter to NIH Director Francis Collins was delivered on a predictable timeline that we had the flexibility to determine. It was drafted by a team of six people including two scientists, over a period of eight weeks, in which no less than ten additional people weighed in. We had also intended to make the content available for public comment. In the end, we ran out of time but calculated that inviting the community to sign the letter would allow people to choose whether or not to endorse it and to add their own comments.
As our movement grows, we are going to keep achieving meaningful impact on an ever greater and more public scale. That is the power of our grassroots model. However, it also means that we are taking on an enormous responsibility. We owe it to ourselves and to this community to ensure that we develop the processes and capacity to effectively meet this moment. Even with the best of processes in place, we will take false steps, we will make mistakes. That is an inevitable part of trying to achieve extraordinarily difficult things. What matters most is that we keep listening to you — our community — and that we keep finding ways to do better and keep growing our capacity to create meaningful change.
#MEAction needs to invest more in transparency, communication, and more robust internal processes. These were not in place at the organization’s inception, when it was just me and my co-founder, Beth Mazur, hand-coding the website and trying to convince everyone we could to join our party. The only coordination required was with each other. We tried hard in the beginning to implement elaborate processes of participation, but these failed as we had neither the staff capacity to coordinate them nor the volunteers to actually do the work.
This is a new world – in the best of all possible ways – and as such it is time for us to grow as an organization. Here are the steps we have already taken and will endeavor to take in the coming weeks and months:
- Parliamentary briefing: Several weeks ago, we amended the UK Parliamentary briefing, incorporating many of the comments our volunteers gathered on social media and in various forums.
- Senate resolution: In the process of introducing the resolution, one line was inadvertently changed. Unfortunately, that change replaced some of our original suggested language with new language that added ambiguity to the text, resulting in confusion and upset in our community. In referencing the 2015 Institute of Medicine (IOM) report Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness, our intention and that of our partner organizations has always been to get Senators on record as 1) supporting the IOM’s finding that ME/CFS is a devastating, biological, multi-system disease, and 2) supporting the IOM’s clear call to federal agencies to increase biomedical research. Our intent was not to support the IOM’s suggested name change to SEID or the IOM diagnostic criteria. Our goal is to revise the language to reflect this when subsequent versions of this Resolution are introduced in Congress, in order to make the original intent clear.
We’ve heard from some advocates that the ambiguity in recent weeks regarding how we work and what our policy positions are has, understandably, been confusing and distressing. To address this, here are the steps we plan to take in the coming months:
1) We will design a process to articulate our core values and policy positions. Through a process that includes #MEAction volunteers, #MillionsMissing organizers and the broader community, we will draft a set of foundational principles – an expression of the values we aspire to as an organization and in our conduct to one another. In addition, we will draft a statement of policy positions (e.g., diagnostic criteria, research criteria, position on CBT/GET), some of which will govern the network globally, some of which will be specific to the various countries in which we operate. We will use broad participatory mechanisms to solicit feedback before adopting these documents. They will provide a clear, public benchmark against which our staff and volunteers around the world can gauge and evaluate our work.
2) We will create a clearer process for all public documents. We are designing a robust internal process for more thoroughly vetting any major public documents with our brand/imprint to ensure they align with our foundational principles and policy positions.
3) We will clearly define how we work with partner organizations. We will work with the community to clearly define how and when we work with partners when a project aligns with our foundational principles and policy positions.
#MEAction will never be a unitary organization. We are consensus-driven. Our policies, strategies and messages are substantially shaped by the volunteers actively working on all of our various projects and initiatives, with the support and oversight of our staff and Board of Directors. We are still a porous space, providing ways for individual members of our community to launch their own actions, petitions, and events, and to submit news and opinion articles that potentially reach tens of thousands of engaged people. We encourage discussion and collaboration in over a hundred Facebook groups. This means that there will be variation in messaging from country to country and from project to project. It means that there will always be a little bit of chaos in the system. The best way to truly understand the work that we are doing and to shape its ultimate form is to show up, roll up your sleeves, and get to work with us. We are a big, wide open door. However, we fully recognize that not everyone will want to participate in #MEAction (while still being impacted by our actions); and many do not have the health. No matter how hard we endeavor to welcome all and invite participation, activism is inherently ableist. This is one of the many questions our statement of foundational principles will need to address, and I think – again, within the boundaries of our own capacities as an organization – we need to continue to endeavor to make #MEAction as accessible as possible.
I also want to take a moment to talk about my incredible team. As we have been fundraising to sustain #MEAction’s future, hire a US advocacy coordinator, and hire our first UK co-ordinator, we’ve received questions like, “How much does a website really cost?” and “aren’t you just an email list?” and “Don’t the volunteers do all the work?” This is in large part our fault. When we launched, we framed ourselves as a tech platform to connect advocates and share ideas and projects but very early on we realized that in order to truly make efforts a success, we needed staff to actively seek out and cultivate projects. And we needed to support those projects by offering advice, strategy, connections, communications, prep work, planning, project management, volunteer recruitment, team-building, drafting documents, sweat/elbow grease for everything and anything needed, and then carrying the work forward as best as we are able when volunteers crash and dip in and out. We lead our volunteers, we follow our volunteers, we serve them in any way that we can. And, like our volunteers, we have and will continue to create and execute projects of our own.
Currently, we are a team of six all based in the United States. Some of us are PWME, some of us are abled-bodied. My position is full-time but unpaid. Our role is often invisible but its impact is clear and the best way to demonstrate it is by example. Last year, we did not formally organize #MillionsMissing as we did not have the staff capacity. The organizers who decided to move ahead did an incredible job with their 17 events. This year, was on an entirely different level: we scaled to 100 public and over 200 private visibility actions. Yes, Unrest played a role in this. But the difference? Our full-time team. The success of #MillionsMissing would never have happened without our staff. Moreover, our ability to reach and mobilize thousands around the world allowed our organizers’ work in Parliament, House, and the Senate to scale and have extraordinary impact. It is equally true that it would never have happened without the hard work, dedication and sacrifice of dozens of volunteers and thousands of activists and participants. With the love, passion and dedication of our volunteers, we are able to achieve far more than a charity with only six employees ever could. And by that same token, the dedication — the day in, day out management and support of our staff — allows thousands of individuals living all around the world to have more impact than any of us taking action alone could ever hope to have. That is the power of community to build an unstoppable movement.
We have so much more work planned going forward with respect to medical and scientific outreach, advocacy before our legislatures, and for strengthening local community, peer support, and direct support.
We realize we are trying to do the impossible. We didn’t start the #MEAction Network because we imagined it would be easy. We do this work because we have no choice. We have to fight for people with ME in a difficult landscape because these are our lives, our families, and our friends we’re fighting for. We are a young organization and are growing with incredible speed. This is an exciting time and we will no doubt continue to make missteps. The key is to put in place processes that can help to prevent them — I believe the above will help and we are open to any suggestions you might have (feel free to write them in the comments below) — and to use them as opportunities to strengthen and improve our organization. We are all human; we are all fighting together, many of us in spite of enormous obstacles. But we must do this work if we are going to secure a better future
With your help and support, #MEAction will only get better the more people who contribute, participate, and help to guide its future.