Important News from Jennifer Brea

Millions Missing demonstration in Washington, DC.  (Photo by Mary F. Calvert)
Millions Missing demonstration in Washington, DC. (Photo by Mary F. Calvert)
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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

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Dear Friends,

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,

Jen

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11 thoughts on “Important News from Jennifer Brea”

  1. Thank you, Jennifer. Your story is absolutely phenomenal. How much you pushed through for the sake of this cause. For all of us. It’s so humbling. My gratitude is enormous. This organization is doing so much to advance our disease. We have credibility and visibility because of you. I personally have a voice around my ME because of you. I cannot thank you enough. I lived in denial and shame until I attended a Millions Missing event. Then, I saw Unrest. And after years finally accepted that I had a real disease. Once I did that, I got command of my illness and my life — for the most part, it’s never perfect. I believe you are now reaching a new phase of empowerment with this illness. These are the decisions that force us to let go make us stronger and lead us to new discoveries. I wish you so grace as you journey inward and focus on your health and healing. It is a profound experience of submission.

  2. petronella Perret

    Thanks so much for all that you have done for people with ME, particularly ramping up the global movement of activism with your film and subsequently setting up the ME Action Network. I feel so much more seen, heard and understood than I did 5 years ago. There’s still a long way to go because we need treatment but today I have hope.

  3. You have truly deeply and immeasurably changed the world for the better and for that I will never craft language expansive enough to adequately thank you. Thank you. Quyana chunk nuk, mahalo nui loa, une mille mercies and more… as a former Public Health Officer and professional as well as a survivor of 23 years of ME and oh too many other diseases, I had often wondered why we could not scrap together a True Hero embodied with the power to unite us for the better. Then came YOU. Thanking Hashem. Please be the healthiest happiest most miraculously radiant future version you have promised yourself to be. I would love to know where I can read up on how to dance again, I was a classical ballet dancer while at University but just being able to throw down would be a miracle. Somebody has to teach the parrots how to jam to good music after all… lol…

    I have handed out copies of Unrest to every one I could.

    I had the same experiences with Covid-19, I caught it in April, in the hospital I was in for a stroke, my post corona world is horizontal and I don’t feel like anything will ever be the same. (I am much older.)

    ……..rambling around to saying, all love and all permission, to empower yourself and your health, your work is always a blessing. Thank You, Bless you. Love you. Light.

  4. Thankyou for all your help thus far .i have very severe ME POTS and allergies and been bedbound completely for 12 years and i could never have done any of the things you have managed .i cheered you on from the wings knowing how hard it would be for you to get out of bed when the inevitable crash would hit .Its because of this organisation and the friends that ive met that i have hope for my future .20 years lost to ME hasnt been easy especially when i had young children .So many times ive wanted to give up but when i would hear aboutthings like the Unrest video and all the onderful things that were being achieved like many others on th ME grapevine ,somehow i too fought for another day .I wish you great endeavors and success for the future wherever it takes you .You are inspirational and now i say if Jen could do it maybe there will be hope for me in the future .Thankyou x

  5. I have hope because of UNREST.
    When I saw it, I saw myself. I thought I was the only one.
    Im grateful for the acknowledgement but am determined to get this serious illness discovered and treated.
    Thank you Jen!! The movie is our greatest voice! You have ignited all of us as the army. Thank you for having the desire, and for using your ability, to be a leader.

  6. Thanks for all you have done for M.E. Hope all in US incl MEAction and others can make one last push to pass bipartisan Bill HR 7057 that now has 51 cosponsors, and if we can get more and pass Cosponsors and pass in the next month, would fund NIH R&D for Post Covid19/ME/cfs at $15M/yr 4 years and make a huge difference. Please use you zip code 3 minutes of your time to ask your Congressional house rep to Cosponsor HR 7057 and help those with Covid19 and the #MillionsMissing, See easy template at: https://solvecfs.secure.force.com/actions/kwac__takeaction?actionId=AR00094

  7. Jen,
    I really understand what you are saying and going through from watch your video on PBS. I have learned a lot from you about this disease and that it is definitely different in so many people in so many ways of life. I myself may how a form of ME or chronic fatigue syndrome but it would be on top of everything else that is wrong with me. I was born with being allergic to so many things around me and to so many medications that would help me but I just can’t take them. I was also born with asthma that has turned into COPD and on top of that having problems with my stomach in what I eat and drink, diabetes and so many other problems that can not be explained or treated cause of having a low amune system and being allergic to so many things that go with it and I have severe bad knees that I have pain all the time and I can’t walk long distance without using a cane or having someone walk with me. I understand that your life is hard and you have had your ups and downs in everything that you do but I just wanted you to know that you are not the only one in life that has it ruff and you just have to think positive about everything and just push though it the best way that you know how to. I have learned that life is to short and that you have to take one day at a time and keep looking to the future and to the one’s closest to you and to everyone around that is here to help in some way. I have been trying to get what ever help I can for the problems that I have but it’s a work in progress that takes time to do and to get people to understand what is really important with my health. I hope that everything goes well and that you have the strength to carry on with the fight no matter what it is.

  8. Jennifer,
    God Bless You always. Without you and the ME site we may have never found out some very important info.
    I wish you happiness, love and a blessed future.
    Peace,
    Susan Phillips

  9. Thank you Jen for all you’ve done for those of us with ME !! You’ve been amazing, can’t imagine struggling with ME without your support and enormous efforts to our cause. I pray you are able to continue with your guiding hand in this journey for all of us to get well !! God Bless You and all who have helped you. 🙏❤

  10. Hello Jenny,
    I just saw UNREST (from Spain) and was shocked to know about your situation. I had no idea about how many people were affected worldwide. You are a source of inspiration and so is your husband. Thanks to your work you are not invisible anymore and that’s the first step to get the attention and the funds that you need. You will be in my meditations. Take care. I wish you all the best.

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