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

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13 thoughts on “A Letter from Jennifer Brea about her ME Remission”

    1. I am thankful to have bumped into your documentary and Ted Talks. It was refreshing to find someone researching to find answers. I thought I was alone or that this condition was very rare, but the factual statistics you shared were eye opening, comforting, and staggering. I appreciate you and your husband making yourselves vulnerable by sharing your story to not only seek answers for yourselves, but for so many others also. You shared facts and sought to uncover more to explain the deeper levels of the why and how. You brought increased attention to the necessity for more research to more accurately find causes, address and effectively treat ME, instead of merely diagnosing by elimination and allowing so many active people to disappear from productive, contributing, professional lives, alone without answers of what causes this condition and what is effective treatment.

      Thank you again for sharing your story, your journey and what you discovered along the way. I am so thankful you are doing well! I wondered what had happened to this amazing woman who had presented Information that provided comfort and hope during a very difficult time in my life when I had to adjust from a physically fit, active, independent, leader in life to fully dependent on others and a system that doesn’t fully understand ME yet.

      I was a workaholic who never dreamed I would ever need to slow down, and certainly not ever be bedridden. Life can change so quickly and unexpectedly. My ME experience has shown me so much from a wider array of perspectives. Compassion for others who are isolated, have mobility challenges, the many ME and other circumstances people find themselves in. What action can be taken to best help.

      You have taken action Jennifer! You have helped! I know this is several months from when you wrote this letter, but I just discovered it. I thank God for you, your intelligent mind that you have used to help so many people and pray for your continued good health and wellness.

      Thankfully I was able to take an early retirement…not without huge penalty…it was not a “disability” retirement…because this was not seen as debilitating, and it was taken prior to normal retirement age limits. The perceived reason being it doesn’t yet have blood and/or other concrete medical diagnostic tests. It was extremely challenging working with insurance companies, who are protecting their bottomline. Although I had a disability benefit through my employer, as well as a supplemental disability benefit I had been paying into for years, I was so stubborn I didn’t want to apply for any help. Eventually, I succumbed to pressure to apply because of my lengthy bedridden, debilitated state. Upon application and, when really needed, I was denied.

      Thankfully, I have a loving husband with a good job and we are no longer raising our four children. As adults, our children have also helped care for me along the way. I had to leave my professional position of many years and my active, independent life behind. When I was in my 40’s this all began. I am now in my 50’s and have a new perspective on life and have learned so much, but there are so many people with ME who may not have the family support and resources I have had. How lonely the days can be even with loving care and support. How you have reached out to people through research, social media, etc. is incredible and I’m sure encouraging to so many!

      Thanks again for all you have done Jennifer!

  1. 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/

  2. 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.

  3. I am glad you are no longer suffering. I think that those who advocate for people with conditions like yours should be those who have experienced persistent not temporary recovery.
    I am not sure how your remission explains that you had ME, but I hope you stop misleading the hundreds of thousands of individuals that just need to have their emotional and physical suffering properly understood and not mislabelled by armchair experts.
    Have you considered the vast harm that is possible when people who don’t really know what they are taking about pretend to know what they are taking about and become people whom viler able individuals look up to? Many will die because they weren’t properly spoken for and understood.

  4. Thank you for everything you are doing and have done in the past. You are an articulate, smart as can be, powerful advocate. It’s a blessing to all individuals with CFS or other elusive conditions to have you on their side.

  5. I suffered with severe CFS, as they used to call it, for several years. I am now cured, and I’d like to tell you my story.
    It took several years and involved several alternative treatments, but I am now free and living a normal life. Some ground was never regained, nothing major, but I no longer suffer. At all.

    Vicki H

    1. I would like to know what alternative treatments worked for you! I know everyone is different but it might help – maybe me, maybe someone else. Thanks!!

  6. Thank you Jennifer and your husband so much for documenting your toughest moments and being so brave to tell yours and others stories to the world.

    Your movie helps me profoundly in so many ways.

    It is incredibly reassuring that we are facing up to this subject of “ME/CFS/FM/Invisible Disease, etc” as a worldwide cooperative activity thanks to the internet.

    Sufferers working with the medical profession working with scientists working with carers – all together we can improve our world as a cooperative activity. Jennifer – thank you for taking a stand and organising so much and so many.

    This is the way of the future. Together as human beings we are strong. We do amazing things when we work together as humanity.

    Thank you again so very much.

  7. Barbara Proctor

    I don’t think as an 85 year old woman that I was ever touched as much as I was watching your incredible documentary. I can only wish you continued success in whatever you pursue!!

    GG ( gorgeous grannie)

  8. I just finished watching your documentary, Bravo! My heart breaks for everyone diagnosed with this disease, their families and caretakers. Thank God you are in remission and pray there will be a cure asap!
    You are lovely and Omar is truly a prince among men. I respect and admire you both more than I can say, you are both in my prayers and may God bless!

    R Kay Litton
    Austin TX

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