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A Letter from Jennifer Brea about her ME Remission

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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,

Jennifer Brea

Executive Director

#MEAction

Categories: All News, Featured news

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3 comments on “A Letter from Jennifer Brea about her ME Remission
  1. Martha Wall says:

    Thrilled for you!! Hope you continue to heal and ME leaves you alone forever.

  2. KKJ BREY says:

    I am so happy for you Jennifer and wish you a speedy recovery from surgery. I have found Ari Whitten’s Energy Blueprint to be a help to stay awake. He promotes circadian rhythm sleep hygiene, hormesis
    Intermittent hypoxic training (IHT), meal timing & diet as well as a myriad of actives to increase energy. I was diagnosed with Narcolepsy in 1990 and suffer from extreme EDS. https://www.theenergyblueprint.com/about-us/

  3. Lyn says:

    Jennifer wonderful to hear of your relief from symptoms and wishing you well from your recovery from surgery.
    I am on my second bout of ME which has been more debilitating than the 1st round which took a little under 3 years to recover from. I work with a naturopath/acupuncturist 2-3 times per week. Have been doing this for 19 months now and symptoms are slowly subsiding again and the appointment frequency will very soon drop away. Incorporated in the treatment is trauma release work which the body brings to the surface at the appropriate time and the acupuncture helps clear pathways to allow the trauma to leave the body. Many traumas are from my lineage etc not mine but it’s amazing that I am able to release them. We work with communication from the body so I know what diet and supplements will assist best as we go along. All works amazingly well but it takes considerable time. I went down this time exactly the way you did. Heat and electric shocks at the back of the brain and then downhill from there. Spent many months in bed and then crashed again as simply tried to do too much. My body is clearing so much junk DNA that once I recover this time I should never have a problem again. Alternative technology shows so much of what is happening to us. I find the quantum physics biofeedback system SCIO to be the best.
    I had seven years of normal life with great health in-between the 2 rounds. The machine is great to give the visual and can be helpful in ways but technology will never be as good as a truly evolved and highly capable natural acupuncture therapist. Not many of them on the planet but they are out there.
    Getting the liver and heart stronger at the present time. In approx 11 months time I should be functioning at a reasonable level and taking it carefully from there. I have learnt so much and I am recovering from this again. No hand paralysis, energy surges through the body, head pressures way down etc. Fatigue reduced thank goodness. I am 62 years of age and this has been a 12 year journey but I am empowered with knowledge of what to do. The body is amazing and can heal it’s self we just have to give it the right support.
    We do not have to suffer so badly. Chinese Medicine with it’s 5,000 years of experience has so many answers to most health issues.
    Take care all and heal.

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