Today we announce that #MEAction’s co-founder and executive director, Jennifer Brea, is going to be transitioning to a board position so she can take time to focus on her health after five intense years of ME and advocacy. This will not happen immediately- we will be working hard to find a new Executive Director first! And Jen is not going away, but we are so proud that she is taking the time she deserves to focus on her health.
We are so grateful for Jen’s bold vision as our executive director over the past five years. We will miss working with Jen on a daily basis but we are delighted she will continue to share her talents and dynamism as a board member.
Please join us in celebrating the work that Jen has done as executive director since our founding, and read her letter about the transition. Meanwhile, #MEAction has begun the search for our new executive director and we will update you and ask for your help in the search.
Words can’t begin to express how much Jen has done for #MEAction and the fight for health equity for all people with ME. This community is strong, supportive, brave, and bold. Thanks to Jen and all of you, we know we are poised to continue the work, together in solidarity. Today, we thank Jen and begin our search. And tomorrow, like every other day, we continue the fight.
Laurie, Ben, Erin, Holly, Jaime, Hannah and Adriane
Letter From Jennifer Brea
I am writing today with some big news. After five years as co-founder and Executive Director of #MEAction, I plan to step down from that role sometime in the coming months, while continuing to serve as a member of our Board of Directors. Next week, we will officially launch our search for #MEAction’s next Executive Director. I wanted to offer a small window into why now and what’s next.
Making a film, building an organization, and growing a movement, all while living with moderate to severe myalgic encephalomyelitis (ME), was challenging, to put it mildly. I did not do it alone. I had the support of my husband, and we had the support of so many friends and family. I also had the strength I drew from you and from our community. With the help of fellow patients and the passion and commitment of our #MEAction staff, I have been able to keep going and keep doing this work that I love, for longer than I ever imagined possible. I am incredibly grateful for that. Every time I was crashed, bed-bound, or facing a new health crisis, our staff, volunteers, and donors stepped up, the organization grew and, together, the work thrived.
Over the last two years I have had to push through more personal crises than I care to count. I had surgery for thyroid cancer, which dramatically worsened my symptoms of craniocervical instability, atlantoaxial instability, and tethered cord syndrome. I then had multiple major neurosurgeries and a 40-day hospitalization. The recovery and rehabilitation from these surgeries, hospitalizations, and eight years spent largely in bed or in a wheelchair due to ME was challenging and is ongoing. However, these diagnoses and the treatments for them afforded me the ability to move, think, and exercise without being crushed by the post-exertional malaise, sensory sensitivity, and dysautonomic flares that for so long had become the cost of living. I could walk, I could hike, I could close out the dance floor. It felt like a miracle.
In spite of all these challenges, in May of last year, when I announced the remission of my ME symptoms, I committed to continuing in my role as Executive Director. I did so because I believe deeply in this organization, in its vision that an empowered, connected, thriving community can change the world, and I knew that with my newfound, post-operative capacity, there was so much more that I could dream, build, do, contribute.
Then in March, my husband Omar and I both got COVID-19. While my ME symptoms did not come back, I became bedbound again, this time for different reasons. For three months, my lungs would burn with even minor movement. My mast cell activation syndrome (MCAS) flared and began to affect new organs/body systems that had never before been affected. This virus was and is so new, I had no idea if I would recover or how it might impact my health in the long run. It took me six months, but I have (nearly fully) recovered from COVID-19––albeit with much worsened MCAS. I did so in part because of the strategies I have learned being a part of this community. I stopped, rested, and then very carefully paced. In those months of uncertainty, I confronted what I had never really had the physical or emotional space to confront during my years living with ME: the truth that these last eight years, for all their gifts of friendship, purpose, and meaning, have also been deeply traumatic.
COVID-19 was the moment that I finally accepted my fragility. I know that is a strange thing to say, given how sick I have been. I’ve always encouraged others, especially patients involved in advocacy, to put their health first, to know when to step back, take a break, or pass the baton. It is an ethic we have worked hard to cultivate within our #MEAction community, but it is advice I have never given myself the permission to take. I have a lot of work to do to heal emotionally and physically from all that I have been through, and I’ve reached a point where that has to be my primary focus. I have always put the work first. Now, it is time for me to pass the baton, to put my body first.
The good news is, I have never felt better about doing so than I do at this moment.
Five years ago, co-founder Beth Mazur and I envisioned #MEAction as a platform to develop and support many leaders. We wanted a space where we could come together to fight for ourselves and fight for the people that we love. We believed deeply in the collective power of the ME community and the possibility of distributed leadership. Whether we are doing public outreach; agency, congressional, or parliamentary advocacy; medical education; or offering each other support in our 100+ local and affinity groups, #MEAction has always been a community of many leaders, committed to building capacity across our entire community. I’m very proud of the work that I’ve done, but it has never been about one person: it’s always been about all of us doing what we can, big or small.
Together with our staff, volunteers, nine #MEAction USA State Chapters, #MEAction UK and Scotland affiliates, and all of you, we have accomplished so much in these first five years:
- We helped organize #MillionsMissing events in almost 100 locations, expanding the recognition of this disease around the world.
- We helped bring Unrest VR to Capitol Hill; sent the film to every congressional staffer; mobilized thousands of constituents; cultivated new allies in Washington; and ultimately helped to pass Senate Resolution 225.
- We screened Unrest in Parliament, mobilized over 3000 constituents across the UK, and collaborated with MPs to initiate a series of debates, culminating in an historic House of Commons motion.
- We put pressure on US federal agencies, resulting in an historic meeting with NIH Director Francis Collins.
- In the face of COVID-19, we developed educational seminars for clinicians and long-haulers, organized new medical screenings of Unrest, and garnered press from numerous major outlets (like The Washington Post, Time, and The Atlantic) on the possible connections and lessons of COVID-19 and ME—and that doesn’t even cover half of our COVID-19 work.
- For years, we have campaigned against the harms caused by graded exercise therapy (GET) in the UK, organizing petitions, educating MPs, and submitting public comment. Then on Tuesday, after decades of work by the entire UK ME community, NICE published its new draft guidelines, which have effectively scrapped GET as a treatment for ME.
Needless to say, I am so unbelievably proud of all we have achieved, together!
I am also excited about this moment because of the work of our friends and partners in the ME community and beyond. Solve ME/CFS’s groundbreaking You+ME registry and our Congressional advocacy collaborations; the massive research network the Open Medicine Foundation has built and funded, along with its new partnerships in Canada and with Emerge Australia; the work of Action for ME, Forward ME and others on Decode ME; PolyBio’s vision to push the frontier of measurement, with their tissue analysis studies and high-resolution neuroimaging; and the emerging long COVID community’s fierce advocacy and patient-led research. Our collective strength, capacity, and innovation have grown in ways I don’t think any of us could have imagined five years ago.
The pandemic will forever change our world. Those changes will be felt profoundly by our ME community, presenting us with fresh challenges but also new opportunities to finally create the change we so desperately need. Our next Executive Director will have the daunting but exciting task of working with our board, staff, and volunteers to envision how #MEAction can best contribute to that new world, and collaborate with all of our partner organizations to fulfill our mission to fight for recognition, research, and compassionate, effective care for people with ME. I am excited to work with our Board of Directors to find that leader, someone who can help propel #MEAction and our community toward an even better future for the millions who have been affected by ME.
While I am confident and hopeful about what lies ahead, this decision has been a weighty one for me, personally. There has been a lot of joy, marveling at how far we have come, and a lot of tears. I want to be clear, though, that I am not going anywhere tomorrow—the search for our next Executive Director could take a few months, it could take up to a year. I also want to be clear that I am not leaving the larger fight. I plan to remain actively involved in #MEAction as a Board Member, and to support and contribute to the work of all our organizations, as I am able, for many years to come. I have no doubt that #MEAction, our community, and our work will continue to thrive, thanks to our thousands of volunteers, donors, staff, board, and every-day activists around the world. I look forward to supporting, advising, cheerleading, and amplifying all of that exciting work to come.
With a gratitude deeper than I will ever have the words or the art to convey,