Humans of ME/CFS

It’s Been 365 Days Since COVID-19 Changed Me Forever.

Karyn Bishof: Covid-19 Longhauler and Founder of the Facebook Group- Covid-19 Longhauler Advocacy Project. Firefighter/ Paramedic, Single Mom and Former Director of Athletics

I am a COVID-19 Long Hauler and I have been sick for a year. March 15, 2020 was the day I first became symptomatic, with a sore throat as my first symptom. Little did I know that March 14th, 2020 would be my last day of normalcy and life as I knew it. I contracted COVID-19 working as a Firefighter/ Paramedic (FF/PM) in South Florida and contracted it not from a patient, but from someone at the station I sat next to for 10 hours a day at the time, before masks, and before we even knew COVID-19 was anywhere in the U.S besides at that Washington State nursing home. My acute infection was a moderate case that I was able to manage at home, though there were a few days I was very concerned. Thoughts of going to a hospital were driven by my extreme fight to maintain consciousness, which in hindsight, was likely due to the silent hypoxia many COVID-19 patients face. I also experienced a relentless headache, fatigue, weakness, fever, cough, confusion, nausea, vomiting, diarrhea, dizziness, insomnia and shortness of breath after coughing fits or with any activity as simple as adjusting my covers in bed or walking up one flight of stairs. I quarantined for two weeks, and then returned to work where I still struggled cognitively, with fatigue, with shortness of breath, with a cough and the relentless headache. Seven of us at my station had gotten COVID-19 together, and two others besides myself, were struggling with recovery when we all returned.

A week and a half after returning, everyone else had recovered, and I had finally started to feel a little bit better. Then, I was terminated, without cause, without reason, no explanation, nothing. That triggered a massive stress response which I am sure was a contributing factor to me becoming a Long Hauler (and yes, I have an attorney, in fact, multiple). Fast forward to weeks 6–8 post infection, I started to develop all of these new symptoms I hadn’t had before, and symptoms that I thought had resolved returned. Week 8 (which seems to be a pattern for Long Haulers) had me in bed, again contemplating going to the hospital, but by this time, we were full swing into the pandemic with overloaded hospitals and being told do not come to the hospital unless we are about to die. This was the official start of my Long Haul journey and what I have experienced for the last year, and what I fear may be the rest of my life.

I grew really tired of feeling like crap every single day and not knowing what was wrong. I went from being a FF/PM, who worked out 5–6 days a week at Orange Theory Fitness and played soccer to being stuck in bed 85–90% of the time. My lifestyle had completely changed. I hadn’t yet heard about anyone else experiencing symptoms for this long, or developing new ones weeks and months later. I turned to the internet, googled “prolonged COVID-19 symptoms” and found an article by Ed Yong which introduced me to the reality that I was not alone and that many others called “Long Haulers” were experiencing the same things. I joined a group called “Long Haul COVID Fighters” founded by Amy Watson. It turns out, Amy and I are “COVID twins” and became symptomatic on the same day, March 15, 2020. Amy, who is a 47 year old teacher from Portland, Oregon, that has been unable to work and return to the classroom for a year due to both her health issues from COVID-19 and the school closing and getting furloughed. She has been forced to rely on unemployment benefits and her savings. Amy said she hopes to return to her job in the fall, ut says it is yet to be determined if she will be able to.

Throughout my Long Haul journey, I have experienced over 90 symptoms, while over 200 have been identified through patient-led research. Most Long Haulers experience a myriad of different symptoms, that vary in frequency and severity and this makes it very hard for us to try and get through the day, let alone the week. It also makes it very difficult for medical providers to believe us and help us. Lisa O’Brien, a Long Hauler from Roy, Utah, is also at the year mark and is the founder of the “Utah COVID-19 Long Haulers”. Lisa became ill on March 11, 2020 and told me her first 7 weeks were pretty mild, except the shortness of breath. “It was a struggle just talking on the phone for 20 minutes, which would leave me breathless. During my worst months, I had to use a shower chair to shower, and my teenage children had to start driving me around everywhere because I couldn’t trust my body to behave the way it should”, she explained. “I’ve been lucky to be able to work from home and that my job isn’t very physically demanding. The cognitive issues have been the biggest struggle for me as far as work is concerned. Sadly, I have seen many in the group who have lost their jobs because of their continued illness. Some people have had to quit, some people have gotten fired, and some people have to find jobs that are less physical or mentally demanding. The symptoms Long Haulers experience are debilitating, disabling, life altering and are impacting every single aspect of our lives” she told me. A year later, many of us are not better and the hope we hold on to is dwindling.

If you are a Long Hauler, or anyone else with a chronic illness, you have likely been told at some point that “it is all in your head, it is anxiety, it is psychosomatic.” THIS NEEDS TO STOP! Almost every single Long Hauler will tell you they have experienced so much medical gaslighting, that they now suffer from pre-appointment and appointment anxiety and PTSD because they expect they are going to be dismissed and belittled, AGAIN. This is unacceptable and the opposite of what a patient should expect or have to experience from a provider. I was told by the first doctor I saw (a workers compensation doctor) that he had a heart attack patient and a COPD patient that had COVID-19 and were fine, so there was no reason why I wasn’t. Comparatively, Lisa told me “like many other COVID Long Haulers, from the very beginning, I was met with disbelief and dismissal from doctors, family, and friends.” Twice, she developed blood clots, and both times had to see 2 different doctors, at 2 different locations on 2 different days to get them to do further testing to find them. “Both times I had initially been told that I just have anxiety” she said. Had Lisa not been persistent and an advocate for herself, she may very possibly not be here today due to Pulmonary Embolisms.

If you are a medical provider reading this, I implore you to listen to your patient, validate their experience and take into account how much they have been through and how they have been treated by providers before you. It is okay to not know the answer to our problems at this time , but simply say so and let your patient know you will do more research on COVID-19 and the other conditions Long Haulers are being diagnosed with. Stop letting ego’s and laziness impede the oath you took to “Do No Harm” because your inaction, dismissal and belittling, is doing a lot of harm, and not just to the patient, but to your reputation with patients and your colleagues. We understand that this is a new virus and we lack answers, and we also understand that Post-Acute Sequela of COVID-19 (PASC) is perplexing and a multi-disciplinary approach is needed. Long Haulers have been at least 5 months ahead of providers, researchers and the medical organizations. We identified this condition long before the medical world did. We distributed patient-led research months before the word “Long Hauler” even met the ears of people at the NIH, CDC, WHO, etc. At no time in history have patients ever organized and come together this quickly to educate others, raise awareness, and become advocates, but we have been forced to.

Long Haulers have taken on the role of being vocal and demanding advocates, but why? The answer is simple. We do not want to be ill for the rest of our lives and believe that early action will lead to a better outcome. The chart below identifies the symptoms and diagnoses that Amy, Lisa and I face a year post infection. This cannot be what life will be like for us from hear on out, but it might be and no one can tell us otherwise. For those who may be reading this who do not think COVID-19 is serious, would you want to live with all of this daily, for the last year, or potentially for the rest of your life? Would you want to see your spouse, parent, child suffer like this for the rest of their lives? We believe that putting out our personal experiences and medical findings will help raise awareness and may be the tipping point that triggers someone, who wasn’t taking precautions to stay safe, to start taking them. COVID-19 is not just a cold or flu and it is much more than the 1% death rate that people love to flaunt as their excuse to be reckless, endangering others.

Many Long Haulers have joined other chronic illness communities and have learned that these illnesses have been under researched, under funded and misunderstood for decades. Many of these diseases primarily affect women and pin anxiety as the culprit, just like we are seeing with PASC patients. Back in July, I created the “Covid-19 Longhauler Advocacy Project” (CLAP) to advocate for Long Haulers, provide education to Long Haulers, medical providers, researchers, the media and the general public, and to push for research using our own patient led research as a means to get the ball rolling and quickly! The group now has over 4,000 members.

In November, I connected with Solve ME and the Global Pandemic Coalition and we discussed what we could do for Long Haulers and recognized the overlap with other chronic illnesses such as ME/CFS, Dysautonomia, Mast Cell Activation Syndrome (MCAS), Small Fiber Neuropathy (SFN), Autoimmune Diseases, Fibromyalgia and Ehlers-Danlos Syndrome (EDS). Given this overlap and the large number of Long Haulers that have developed these illnesses (many developing multiple), the Long COVID Alliance (LCA) was formed. The LCA is a network of patient-advocates, scientists, disease experts, and drug developers who have joined together to leverage their collective knowledge and resources to educate policy makers and accelerate research to transform our understanding of post-viral illness. We helped secure the $1.15B for Long COVID research and clinical trials. We have provided guidance to the NIH about Long COVID research informed by alliance partners, will leverage public and private sector resources to create a post-viral research infrastructure, ensure continued growth, equity and sustainability of research infrastructure beyond the pandemic response and translate research results into diagnostics, treatments and cures for millions. The Long COVID Alliance has quickly grown to include 168 partners since its’ launch on February 25th, 2021.

Another significant aspect about our advocacy work is inclusion. There are thousands, if not hundreds of thousands of Long Haulers who were unable to get tests early on or were unable to get tested within the time frame where testing would have been most accurate and detect the virus, and therefore have no “proof of infection.” This is preventing these Long Haulers from getting treatment, being accepted into clinical trials and Post Covid Care Centers. Lisa O’Brien is one of those who was unable to get a test back in March of 2020 in time. She had just traveled to Hawaii and became symptomatic after returning home. Lisa recounted her experience early on in the pandemic regarding testing. “My symptoms did not match what the CDC was saying we should look for and when I visited my doctor 10 days after my symptoms started, she told me that she didn’t think I had COVID-19. She gave me an order for a test anyway, since I had just traveled, but encouraged me to not get tested since “it wouldn’t change my treatment plan”. So I didn’t go get tested until two weeks after my symptoms started when I wasn’t getting better, and I was negative at that point”. Interestingly, most of the Long Haulers in my group, Covid-19 Longhauler Advocacy Project, are well beyond 9 months post infection. The reports of being unable to obtain testing prior to June 2020 are substantial. Many of these same people also struggled to get an antibody test and remain without “proof of infection.” This population of patients are being excluded from treatment opportunities and studies just as they were excluded from testing. They are being penalized for the actions their governments took, or rather didn’t take. They deserve and have the right to be included, and this is one of the many things we at the LCA are fighting for.

Advocacy efforts started with grass roots efforts by groups like mine, Amy Watson’s and Lisa O’Brien’s. They are powerful and effective because all of us are Long Haulers ourselves who realized early on that this was going to be an issue for many, especially when we all started to experience medical gaslighting ourselves. We recognized the mass numbers of people sick who had no clue Long COVID/ PASC was a thing. Our groups are a place for support, to talk to other people going through the same things because of COVID-19 with their health, finances, employment and relationships. The groups are a place to share resources such as the “master document” I created, a lists of COVID-Competent Providers and a way to contribute to the list, Post COVID Care Centers, studies, trials and research opportunities, a sample letter to write to your local congress members and much more, all of which can be located in the resources section of our “Master Document” in my group (CLAP). Amy’s and Lisa’s groups have become valuable partners in the LCA, as have many others. Partners continue to provide resources to be added to the website to contribute to the education and awareness campaign surrounding Long COVID and the patients needs.

Awareness about Long Haulers has come a long way in the last few months due to advocacy efforts like ours, but we still have a very, very long way to go. For people like me, who have been diagnosed with so many other health conditions caused by COVID-19, it is hard to imagine a return to normal. I estimate my quality of life to now be at 30–40%. My relapses and flares have turned into an everyday hell, I’ve become very good friends with my bed and enemies with the sun and heat outside in South Florida. Yet, I’ve become a very driven and determined advocate for Long Haulers because I cannot accept that this is what the rest of our lives will look like. I not only fight for my return to health for me, but also for my son who is 12, as I am a single mother. He doesn’t deserve to lose out on life and all of its experiences because of my illness. It’s not fair and I, along with many others, am dealing with extreme mom guilt because of my illness. For his 12th birthday, I had to rent an electric scooter so I could attend the outing at the zoo. It was very emotional for me to have to do, but I did it for him and he made me feel better about it when he hitched a ride. He thought it was fun, which lessened my stress about it. I am so thankful he is the amazing, helpful and smart kid that he is. He is such a great helper, and sadly, even marked himself as my caretaker on a school survey. He has managed to pull straight A’s in his honors classes that have been 100% virtual during his first year of middle school. For him and his perseverance, I am blessed and proud.

This was my sons 12th birthday at the Miami Zoo and my first outing in a year. I was really down about having to use an electric scooter for the day, just to be able to attend. Sometimes letting go makes you stronger than trying to hold on. We enjoyed the day safely by distancing ourselves from others and double masking.

For the people who are not Long Haulers, many just don’t get it. They don’t understand the daily struggles, the uncertain futures and what seems like an infinite timeline of just waiting for a cure. Amy Watson said “I have been at home trying to recover from COVID for an entire year. The isolation has been difficult to adjust to, and I have struggled with depression and anxiety. I haven’t hugged anyone besides my partner and daughter in a year. I miss my family and friends, as well as my school community greatly.” It is not just the pandemic that forces social distancing, but it’s also our illness that prevents us from being able to participate in everyday life. The energy lacks, our beds call, and the recovery from just one doctor’s appointment takes days. Regardless of this illness, we must push on and force ourselves to fight and participate in research. Amy, Lisa and I are constantly posting research opportunities to our groups and encouraging our members to participate. Without participation, we will never get answers. Lisa shares the same thought as I in saying that “early intervention typically leads to a better prognosis. Research will give us the best chance at getting our old lives back or at least improving our quality of life.” We need to participate in the masses, and we need participation and advocates who are raising awareness about our needs in every corner of the world.

The task of seeking treatment is still a very difficult one, even for advocates like Amy. “I’m personally just beginning to find doctors who have any understanding of Long COVID and are willing to work with me towards rehabilitation and recovery. I’m hopeful that with their help I might gradually find my way back to my old life, or at least some semblance of it. It is impossible to express the impact that this virus has had on my health and wellness, and that of so many, many others worldwide.” I too, am just starting to find physicians that are willing to work with me and at least research the topic and try things. However, I am still having to fight just as hard to get them to do so. I am still having to print out research and educate them, to get them to listen and become engaged. Clinical trials are growing, as are the theories about why we became Long Haulers. However, as Amy said “it seems very likely that for some post-COVID patients, the repercussions may be life-long. I certainly hope that isn’t the case, but we just don’t know. No amount of positive thinking can overcome these debilitating symptoms. This is truly a medical condition, and we need the medical community to catch up and work with us to find answers and guide us in working towards recovery.”

One theory about Long COVID is that it’s just a horrible chronic inflammatory response that seems to trigger its own autoimmune disease which accompanies some kind of viral persistence. Many of my personal conditions are caused and worsened by inflammation which you can see below. My inflammatory markers, at a year post infection as seen on the “Longhauler Index” designed by InCellDx, are still extremely elevated. Our hopes are, that once we find treatments for this chronic and severe inflammation, that many of our symptoms will decrease and subside. Up to this point, there has not been any treatments that have made me feel better or lower my inflammation, and some of my markers are higher now at the year mark than they were earlier on, closer to infection.

A year into the pandemic, it deeply bothers me and many others, that there is still no mainstream educational messaging on Long Haulers/ PASC. Why aren’t the health departments airing commercials, creating billboards, ads, posters for medical offices about PASC, what it is, what to look for, what it can cause and trigger? This is something Lisa O’Brien has been very successful at in Utah. Lisa and I are collaborating on a new project to bring her local state advocacy knowledge and success together with my national advocacy efforts and connections to create “State Long Hauler Groups”. This new project aims to get people to start doing advocacy work right where they live. We will be working as a team with State Group administrators and moderators to create a framework and how to of advocacy in their state. We recognize the widespread issues for Long Haulers all over the country, and the world, but we also recognize that each state and the Long Haulers in it have unique needs. We have created a parent organization called the “Covid-19 Long Haul State Advocates United” which will bring everyone together and will act as the leader for, and place of organization for, all of the state groups providing resources, education and guidance to those we are working with on the local levels. We are excited and believe this will help make things happen a lot quicker and it also helps divide the workload, and encourages more people to become advocates and take action. We will be enrolling the parent organization into the Long COVID Alliance shortly. You can visit this link to find and join your states group if you reside in the U.S.

People are joining our groups daily who have been sick for months and had no idea what a Long Hauler was or that it was even a thing, and that are still unaware of the common symptoms and diagnoses. That is unacceptable. We must do better to educate the public, especially Long Haulers and providers. At ~35% of COVID-19 patients becoming Long Haulers, we are looking at Millions of patients in the U.S alone which is a public health crisis on a level we have never seen, and the burden on the healthcare system, long-term is an issue that needs to be addressed and planned for now. We cannot be as slow to act to combat PASC as we were to combat acute-COVID-19 itself. Comprehensive, drastic infrastructure and planning is needed to implement the programs we are going to need to treat and study Long Haulers and the LCA is hard at work trying to help create that infrastructure and provide guidance.

A year after my COVID-19 infection, I am still not better and feel that I am actually declining. The chronic health conditions I’ve been diagnosed with are ones without a cure, therefore, typically are with someone for life. I struggle every day to accept this, and it is part of why I am fighting so hard for Long Haulers to be seen and heard. I have bene unable to work after losing my dream career, and will be filing for SSDI in the coming days. I am mourning who I was as a strong, independent woman and a fun, involved mom. I am mourning that my son is losing out on his childhood because of my illness. I am mourning not being able to live the life of a person in their 30’s, not being able to travel, or take part in everyday life. I have a limit of standing that sometimes lasts up to 10 minutes, and my driving is now capped at about 30–40 minutes, therefore causing me to miss some of my son’s soccer games. My poor dog, Yona, a 3 year old female boxer, doesn’t see the dog park like she used to weekly and typically spends her entire day in bed with me (I don’t hate the cuddles, but it’s not fair to her). For most Long Haulers, a walk down the street, laying out at the pool or riding their bike are not things they are able to do anymore. Most of what I’ve known and enjoyed has come to a halt.

For those who know my situation and what I have been experiencing, I always feel like such a debbie-downer when I respond to the question of “how are you doing or feeling.” I appreciate them asking and checking in, but I really have nothing positive to report and I also want to be honest because it is a means of educating others about Long COVID and the risks associated with contracting COVID-19. I have become an expert surrounding PASC due to the combination of being a patient, having a medical and science background, becoming a patient-researcher and a patient-advocate. I am pound of the advocate and educator I have become and the things I have helped accomplish for all of us thus far. I am proud of the work that Amy and Lisa have done and I am so thankful for organizations like Solve ME and Dysautonomia International for stepping up to the plate early and helping to educate Long Haulers in their respective areas of expertise. I believe we will find solutions for Long Haulers, some day, but also for other chronic illness communities through the Long COVID research that will apply to other post-viral illnesses.

I do not know what my future holds and where my health will be in the months, years and decades to come but I fight because I will not accept that this is my forever. Though it is hard to logically deny it isn’t my new normal, my goal is to return us all to good health and regain quality of life. I am hopeful my son will get his mom back during his childhood. Right now, all we have is looking to the future and holding on to whatever hope we have left. We must maintain this help to continue to propel us forwards by being driven to be involved and push for awareness, education and research. We are the only ones who get it, and we need each others shoulders to lean on, especially when the rest of the world returns to normalcy and we aren’t joining them. I am hopeful that the advocacy work of Long Haulers and our LCA partners will change the way the medical and research communities work and communicate and that our health agencies and government will learn lessons from the pandemic to create better policies and protections now and in the future. I hope part of that is that they are able to provide us with some type of financial benefit to assist with lost income and jobs, medical insurance, ADA protections, count Long COVID as an accepted condition for SSDI and help our children or families for those of us who were the head of the household and can no longer provide the same.

Looking forward, I am hopeful that we will do better at educating the world about Long COVID and preventing more infections in general but especially prevent people from becoming Long Haulers. I ask each and every one of you on my one year COVID-anniversary to keep up the fight because it has just begun. Please get involved in the work that is being done to try and help Long Haulers and please help to raise awareness and educate others about our experiences and needs. This has been a year of absolute hell being chronically and severely ill and feeling constantly defeated and ignored. The tide is changing, and that itself, gives me hope. I hope that next year on March 15, 2022 that I can write to you all describing my path to recovery and discuss the treatments or cure we have found through all of our collaborative advocacy efforts and that all of you are able to do the same.