Virtual #MillionsMissing 2020


Next steps: a letter to our community

Hi everyone,

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 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.

Next steps

#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 actionspetitions, 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.





Categories: Advocacy, All News, Awareness, Featured opinion, Opinion, United Kingdom, United States

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13 comments on “Next steps: a letter to our community
  1. Maria says:

    Hmm the @[171411469583186:274:ME Association] has all of this infrastructure in place .. perhaps a merger would be good? – There are so many splinter groups around – how do we unite with these to create one strong and unified voice ?

    1. Janet Flynt says:

      I agree.

  2. Mary Garrido says:

    I do not have the words to fully convey my gratitude for each and every person who is part of #MEACTION. The rate of growth for this group is in itself a challenge to manage. The rapidity of research and publications, etc that are surfacing in these last few years alone is a challenge to navigate. I appreciate every action every detail you all have attended to – just writing this article had to be quite a feat! Finding the words and stringing them together to write such an informative, inclusive, comprehensive and respectful article is a hard thing for a healthy person to do – and most people are unable to articulate through writing so well. Thank you for this update. Everyone at MEACTION is obviously working so hard to truly help bring awareness and change for PWME, the disease and the history of neglect. Any person who questions or disagrees with the goals and direction that MEACTION takes has a choice to not participate in this group, or better yet, to step up and use whatever bit of energy, dollars, support to be more involved. Blessings to you all💙

  3. The achievements of #MEACTION to date have been show stopping and I know there is more to come. I’m totally on board and will support wherever and however I can. It strikes me, though, that if we can support six staff members, we should be paying you a salary too Jennifer. The work you’ve put in and the amazing changes in attitude this work has elicited have made life better for hundreds of thousands of PWME, at huge risk to your own wellbeing. Take a salary. You’ve earned far more than we can ever repay. X

  4. Barbara Kaplan says:

    I bow in awe to what all of you whom have been so active have accomplished to date, and wish I had the energy and brain power to make more than a small financial contribution. 15 years into this insidious illness, and approaching 70, I find I can do less and have harder time rebounding from an episode. I am grateful that I am homebound rather than bed bound. I have only managed to get through 4 of the Bedfest concerts, my heart so filled by the talent and the shared love, hope and inspiration. I no longer participate in social media so I am sorry to miss all the activity that happens on FB. Thank you Jennifer, staff, volunteers and all of my fellow ME-ers – you give me hope. Our rumbling is becoming a roar – and we will change things for the better! I send love to you all!

  5. Amy says:

    Jen, I think you and your colleagues have done miracles with limited resources. You have given us a real voice that the whole world can hear for the first time. All I can say is keep up the incredible work you are doing! I’m so grateful to you. Thank you from the very bottom of my heart.

  6. Julie Horowitz says:

    I gave my public comment over the phone to the CFS Advisory Committee in D.C. last week thanks to your post notifying us about it and offering help if we needed it.

    I had a wonderful liaison at ME Action, volunteer Debbie Iverson, who guided me via email through the process leading up to my speaking slot. She was so kind and patient with me answering all my emails to confirm facts and stats (which I ended up having to cut due to the 5 minute time limit). When I asked her for a pep talk the day before, she quickly wrote me back one. After giving my public comment, she emailed me: “You knocked it out of the park!”

    I was a political/social justice activist my whole life and even until till I crashed hard in 2010 and never recovered. Not being able to engage in protests and marches lately has been heartbreaking for me. I’ve been sick for 30 years with ME/CFS and in the last several years I became too bitter and cynical from institutional and public indifference to be any kind of MECFS advocate anymore. But you Jennifer became an inspiring warrior. You galvanized me to dip my toe in the water again. I’m really glad I put in all the work I did do speak to CFSAC. I accomplished SOMETHING.

    I don’t know what complaints you’ve received compelling you to write this very long letter…? in what must have been an exhausting task. But please know that I, and SO many, are grateful for what you have done and continue to do. You have certainly given me hope after losing it 20 years ago. You have mobilized me to take a more active role again. Because of you, I shared my very personal Public Comment with my FB friends. I did it to create more awareness and to try and shed the my shame of having this maligned and misunderstood illness. It opened a lot of their eyes to what my life and this illness is like. One of my friends wanted to make a donation and I directed her to #MEAction.

    Thank you for ALL you do!!!

  7. Trudy says:

    Dear Jen,
    You and Beth started out to build a platform for information and support, education and advocacy for ME/CFS patients. #MEACTION has succeeded beyond anything we envisioned at the beginning. Your determination, intelligence and skills have guided the group to a global 21st century presence. Please do not spend time and energy on the pedantic naysayers but continue your “outside of the box” thinking toward the goal of treatments and cure.

  8. Helga says:

    My humble thank you to you Jennifer and MEAction and all the volunteers. The incredible achievements you have accomplished in such a short time are inspirational beyond words. The hope you give to all of us bed-activists and bed-prisoners globally means everything.
    ME-patient / Finland

  9. Cindy Birdwise says:

    I have yet to see Unrest as I am bedbound and broke. Reality for many people with disease and injuries that are challenging. I am Canadian and worked for my governing bodies. Sometimes the federal, provincial and territorial officials were asking for one group to represent one type of issue.

    Now here is where my health fails me as pain fills me up pushing me into closed eyes and fumbĺes. I think links between groups are a good idea. Having a knowledgeable editor to catch errors like Jen mentioned could be part of a communication team being lead by a staff member or board member. An ammendment page or it could be an addendum could be submitted to clarify the mistake immediately. I write for governing bodies as needed.

    I am concerned that there is a huge divide between research on our bodies versus research on our behaviours. This is where adults and children are being violated by business decisions which separate out specialties. Enlightened people realize that we are all in one; brains, bodies, behaviours and environments.

    Many organizations exist regarding health and well-being. I have about 20 diagnosed illnesses or diseases so keeping up with all of it is daunting. I am thankful for all of the people who contribute to dialogue and research.

    Thank you

  10. Penelope Scales says:

    Yes, Jennifer, you’re the person on the white horse we’ve been needing for so many years. You’re life didn’t go as planned (as none of ours did), but with your persona, degrees & ability to express yourself you’ve taken this obscure non-illness (as it’s been treated for the 30+ yrs. I’ve had it) into a world recognized illness.

    You and your sidekick, your Omar, are a blessing to all of humanity. I’m learning to help in a different fashion than I have for so many years. Thanks for everything…..and I truly hope your tale will have a fairy tale ending.


    Penelope Eleanor

  11. Beth Sklar-Baker says:

    All I can say is that I’m beyond grateful for all the work you are doing. I told my daughter that this group is like the Parkland kids in Florida- finally someone is making a difference and taking real action. I’m sure you will figure out the kinks as the organization grows- but please know that what you’ve done so far is amazing. I’d like to help in some way… been a PWME for 28 years and am an LCSW in NJ. Was active in the early years of advocacy but all the support groups and organizations lost steam… as you can imagine! Heartfelt thanks . Beth Sklar- Baker

  12. Leslie says:

    You are truly doing amazing work, and I did not know the whole extent of it. I had a thought I didn’t put in my previous comments . That is that we need to find a way to communicate the concept of SENSITIVE body ……. the dictionary doesn’t seem to have a word that doesn’t sound like we are saying “we think we are more special than anyone else ” Ever after 24 yrs of having ME/CFS last month my doctor changed the dose of my thyroid medication (knowing exactly what I told her my body can tolerate) and she said this new medication was equivalent . The result was that after 2 days on it I suffered labored breathing and irregular heartbeat that after 2 weeks have not resolved (even when switching back to my old medication and old dose). Doctors believe ” no body can be THIS sensitive”. This simply DO NO HARM message would be so helpful. Through the years several doctors have said to me “How was I to know your body was really this sensitive ?”- once they witnessed the setback. “Well the fact that I TOLD YOU THIS” could have been a clue—- but it wasn’t . How I wonder can we communicate this aspect of ME/CFS??? Same goes for bodies that are idiosyncratic in other ways.

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