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#MEAction co-founder, Jennifer Brea, wrote this letter to the community about her remission of ME.
Yesterday, I shared the news with our community that all of my symptoms of myalgic encephalomyelitis (ME) are now in remission. This is the outcome of a long journey that began last year with surgery for thyroid cancer; took an unexpected turn for the worse with the sudden onset of a new symptom, central apnea, as a result of that surgery; and culminated in a diagnosis of craniocervical instability and tethered cord syndrome. Since June, beginning with the thyroidectomy, I’ve had five surgeries. It has been the most challenging year of my life. The remarkable outcome, though, is that all of my symptoms of ME are resolving. This doesn’t mean I am 100%––I am still recovering from the surgeries themselves, a process that will take at least twelve months. (You can read more of the story here.)
What I will say is that by every objective measurement and subjective expert opinion, my ME diagnosis was accurate. I just never imagined as an acute, viral onset patient, that my symptoms could have a structural, mechanical cause. My hope going into surgery was simply that I might resolve the apnea and other neurological symptoms that developed or worsened after thyroid surgery. Recovery from ME is something I never thought would happen for me personally without many more years, even decades, of research.
I have no idea if this will last. I have no idea what this means for other people with ME. I am just one patient and this is my story. But, my story of remission makes it even more clear to me than ever that we must fight for research to better understand the mechanisms underlying all of our cases.
This has always been a movement of people with ME, all along the spectrum of severity, fighting alongside their caregivers and able-bodied friends, family, clinicians, researchers, policymakers and allies. I will never forget the experiences that I have gone through over the last eight years of illness. There are people in our community who have changed my life forever. With my improved health, I will continue to fight alongside each of you for equality, dignity and better care; to challenge stigma and advocate for research dollars and medical education. I will not give up. I am in this fight until every person living with ME, no matter the cause, has access to diagnosis and care. This is why the work of #MEAction is so important.
#MEAction’s impact is growing. Our movement is stronger and more engaged than ever as reflected in last week’s #MillionsMissing, which comprised more than 200 actions in 22 countries on six continents. In the UK, more MP’s have become active participants in our movement than ever before. In the US, advocacy week on Capitol Hill brought over 100 meetings with representatives and Senators. Clinicians, nurses, and social workers all over the US are earning Continuing Medical Education credits by watching Unrest. We have big plans to keep this momentum going and to continue to build the capacity and reach of our movement, organizing at the local level and mobilizing the community around even more actions you can take to increase awareness, medical education and advocate for research.
While I know that remission stories can bring hope, they can also be painful. If this news brings up ambivalent or mixed feelings for you, that is valid. They did for me, too, and I am still processing them.
As I continue on my journey of recovery, I am committed to fighting even harder for health equality for all people living with ME. Join us in this fight.
In solidarity, now and always,