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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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13 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.

    1. Janis Koreis says:

      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!

  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.

  4. Andrew Howard says:

    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.

  5. Alizabeth says:

    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.

  6. Vicki says:

    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. Adriane Tillman says:

      Hi Vicki,

      I’d love to hear about how you returned to health. You can post your story here or email me privately at [email protected]

    2. April says:

      Vicki, if you are real…. Please share with me the protocols you took to become healthy again.
      [email protected] All my best, April

  7. 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.

  8. Rivers says:

    This is Lauren’s Story, she’s one of many Gardasil victims.

    **Video in the comments**

    “On November 22, 2016 our lives were changed forever. My healthy 13 year old was given a flu and HPV vaccination. I declined the HPV shot 4 times because I had a bad feeling about it and had read about healthy teens developing autoimmune diseases following this particular shot. We were told (by our pediatrician) nothing like that ever happens & that those girls were already going to get sick. “You can’t believe anything you read on the internet”, she said. My pediatrician insisted that she would get throat cancer from kissing if I did not give her this vaccine. I was NOT given INFORMED CONSENT, and will regret letting them give my daughter the Gardasil 9 shot for the rest of my life. After pulling her medical records I learned it was her 37th injection and the 51st vaccine that had been put into her body since birth.

    Before the shot, Lauren was an elite athlete and an honor student. She played soccer on a highly competitive, regional level soccer team. She also played tennis, guitar, was active in our church, straight A student, and was a member of the national junior honor society. She had big dreams and a bright future ahead of her.�
    After the shot, Lauren had an adverse reaction. She developed chronic fatigue and head-pain…every second of every day. She also told me, “Mom”, my brain isn’t working right”. She was trying to keep count of reps she was doing for a training exercise and her brain was unable to remember the numbers. She was diagnosed with mitochondria damage and still struggles with her short-term memory and processing information. Her headaches are usually between a 5-8. Ten being the most pain you can imagine or for example a bear tears your arm off. Nothing takes her pain away, not even prescription meds. We have tried everything under the sun these past 3 years to try to heal her body. She says the fatigue bothers her the worst. I asked her what it felt like and she said its like she hasn’t slept in 500 days. The vaccine also triggered her body to launch an attack on itself. At one point her ANA (Antinuclear Antibody) levels were 1:1280, which is an extremely alarming rate. She has since developed autoimmunity of her thyroid and it is likely that she will continue to develop multiple autoimmune disorders because of her reaction. She now has a 500% increased risk of cancer (based on studies) because of the cell damage she has endured. �
    Lauren can no longer participate in any sports or extra activities. She can’t even play the guitar anymore because it makes her head hurt worse and her brain doesn’t function like it used to. Heat and physical activities make her feel worse as well. She had to stop taking the advanced classes that she would have taken.�
    Her treatment and recovery plan are the focus of our daily lives. Hundreds of doctors appointments, blood test, scans, IV infusions, pills, supplements, and the extra burden of eating an organic diet that is free of gluten, dairy & refined sugar are just some of the things we continue to do to try to restore her health. We are grateful that her last ANA tests were negative. There are no days off when trying to heal from a vaccine injury. I will never stop defending her health.�
    I have learned a lot these past few years. Nothing is one size fits all. My daughter is compound heterozygous for 2 SNP’s of the MTHFR gene. Because of this, she has methylation & detox deficiencies which put her at a high risk for vaccine reactions. Unfortunately, I didn’t learn about this until it was too late. Watching your child’s health and life be taken from them is soul crushing. This has affected our entire family and I am still grieving for the life that she once had.

    If we are not given the right to choose what medical procedures are best for our families, then we are not living in a free land. Everything that Lauren has developed is a listed side-effect (on the package insert from the manufacturer) of the Gardasil vaccine. I had concerns that I addressed with my pediatrician that day, and I was told nothing like that ever happens. Parents deserve informed consent. Where there is a risk, there must be a choice. Thank you for taking to time to read Lauren’s story.

    At the time we were interviewed for the VAXXED documentary I thought she was goin to recover with help from the IV infusions. However, when she went back to school and tried to play sports, her symptoms came back and then we learned about the autoimmunity. This is pretty common because autoimmune issues take several months or even years to develop after damage has occurred.

    Today, Lauren continues to suffers from chronic fatigue, chronic head pain & short-term memory problems. She has also been diagnosed with autoimmunity to her thyroid, metabolic dysfunction & immune dysfunction since having the adverse reaction. She is able to attend school, but it’s much harder than is was before her injury. She is not able to do any of the extra activities that she once loved. �
    We have been working non-stop since the beginning of 2017 to restore her health. I am so proud of her for not giving up. We are not defined by what happens to us, but by how we choose to respond. Lauren is tough as nails and a warrior, this has changed her and our lives so much. I am grateful for all that she can still do, and pray that she can continue to heal.”

    With Heather Falconer Miller
    Lauren’s Mom & Defender
    Kansas City, MO
    (This was taken from a fb share.. I keep hearing of these stories of children with auto immune issues that come with Chronic fatigue… could there be any link for you as far as a shot ? It seems like doctors are continually dismissing in many cases that there could be a link?)

    1. Lyn Treasure says:

      Dear Heather and Lauren
      So much can be done for Lauren to recover. Lauren is still able to function in life so way ahead of many.
      I am 63 years of age and a very determine person. My saving grace through my own journey with CFS and the added recent diagnosis of POTS Syndrome is that I have never trusted general medicine because it is chemical base which is so very dangerous. We are organic after all. Very apparent there was simple was not the intelligence present with the practioners and they are so controlled by pharmaceutical companies. In fact my doctor (general medicine practioner) clearly express his own concerns about the industry he works in and has become a nutritionist to avoid prescribing drugs.
      A 12 year journey with this illness and lots and lots of learning.
      Crashed in 2007 and took 21/2 years for recovery using acupuncture, naturopathy and homeopathic as well as my own efforts with herbs. I was extremely healthy once I recovered. I had a milder dose then and could still get myself to appoints but definitely could not work. This time was what I now term “a practice run”. At the time we did not know that POTS Syndrome was present. Even if we suspected it did not have enough of a presents to show up on any tests.
      2017 – My central nervous system collapsed after a lengthy walk. I was left with my brain shaking in the head, my heart felt like it was going to explode and lots and lots of unusual sensations from head to toe. This was the POTS striking. Bedridden for months with barely managing to get to the loo. Have had a carer ever since who takes me 3 times per week to the Naturopath/Acupuncturist. She has saved me and we still have a way to go for full recovery but I have survived the ordeal and making progress.
      The healer or healers must be of top quality – very well trained. For example mine was Australian Trained (but that is not enough), worked in clinics for several years then took herself of to China and worked in a hospital. It is normal there for the various healthcare options to be available in this environment. Chinese Medicine is a science over 5000 years old in comparison to Western Medicines perhaps 300 years with a bad reputation. My practioner is very advanced and is also a Holistic Healer which means she also follows the bodies instructions as it knows what it takes to heal you (not someone guessing). This is normal healthcare practices in Asian Countries not something weird. Since discovering all of this I now also have a Holistic Dentist who takes instructions from the teeth. No injections and for an extraction the tooth is communicated with and surrenders to the extraction and releases easily. Now this is healthcare.
      What happened to my Mito cells – most died off during the crash, but with acupuncture, supplements, and very importantly sunshine they have return to a greater levels.
      Prescription drugs will damage the liver, kidneys and brain. Again acupuncture and supplements improves all of this. The liver also needs us to be in nature so it can tune in and aid it’s recovery.
      POTS – we are working on that now and it should go completely and never return again as I am strong enough. This also will now aid others as my practioner knows the underlying cause for many of her patients and the POTS can be moved out of the body before it does severe damage as was done in my case.
      Good luck with healing Lauren and to your wonderful who solidly supports you. Hope my experience is helpful for you.
      Kind regards
      Lyn

  9. Nancy Little says:

    Just watched your documentary and I feel so much respect for you and all of the people you connected with. Making the absolute most of your lives. It was very motivating to me, a person with depression and anxiety. You all are inspiring. THanks, Jennifer, for shining a light on this issue.

    So happy that you found a man with the emotional maturity and capacity to love you as you are and to stay in there with you. You are both rare!

    Love to you for bringing this story of hope into my life.

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