I caught a virus. No, not THE virus. But a virus, nonetheless. And I never recovered.
I remember when it all began, at the start of a new semester of college. I remember dragging myself out of bed in 2009 to attend an anatomy lab where attendance was mandatory, with the thought, “at least it’s right by the health center and I can combine the trip.” I remember the look of surprise on the nurse’s face when she took my temperature and it read over 102 degrees and she replied, “Did you really just come from class?” My test results came back positive for H1N1, the swine flu. I think of the classmates that I put at risk and I wonder if any others fell ill. Do any others remain ill a decade later, like me?
I have Myalgic Encephalomyelitis, also referred to as Chronic Fatigue Syndrome (often condescendingly), a neuroimmune condition with symptoms, including post-exertional malaise, unrefreshing sleep, cognitive dysfunction, orthostatic intolerance, pain, headaches and more. Studies show that 25% of M.E. patients are housebound or bedbound and only about 13% are able to work. Up to 80% of all ME/CFS cases are caused by infection and in my case, my illness was caused by a virus.
But this is not a melancholy tale. Yes, the effects of this illness are devastating. We are angry. We are suffering. We are neglected. We are trapped in malfunctioning bodies and feel helpless. All of these thoughts and feelings are valid.
This is a tale of resilience, strength, and survival; we battle these symptoms day in and day out without necessary support from the medical community. This is a tale of persistence and perseverance; we share our stories in the hopes that we find strength in numbers and will one day receive the knowledge and support we need. This is a tale of hope – that we are not living through these symptoms in vain, that science will provide us an explanation and a solution to reverse the damage of M.E. and hope that by sharing our stories, we can prevent this illness from progressing to severe M.E. in many new cases of M.E.
To COVID survivors – we are here for you. We are ready to welcome you into this community. We are already fighting for you and we will continue fighting for you and everyone else that is healthy now, but who could develop an acute illness and never recover.
Raising Awareness for M.E. & Sharing My Story
May 12 is M.E. Awareness Day. Each year since May 2016, #MEAction has united people with ME, caregivers, and allies to raise awareness and demand action. This year, the fifth anniversary of #MillionsMissing – this mission is more critical than ever. We need to raise awareness, not just for the millions that are currently missing, but for the millions more that will be joining us in the coming months and years.
Those of us in the M.E. community face the stigma of disbelief. We have been given treatment guidelines that actively harm us. We face diagnostic delays and many are undiagnosed. We have relied on each other for mutual aid and advice dealing with dynamic disabilities. We have learned the hard way that doctors don’t always have the answers, researchers don’t always have the funding, and healthy people don’t always stay that way.
My health history is riddled with red herrings, gaslighting, and medical trauma. Many of those wounds are resurfacing during this pandemic. I share with you my M.E. story, with other factors that played a role in the progression of my illness, in the hopes that you understand this can happen to anyone. My symptoms are not a result of poor choices or bad moral character. They are not a result of circumstances that could or should have been avoided. My illness is just something that happened to me, and it’s something that could happen to anyone. I ask that you listen, that you believe me, and that you care, because too many people with M.E. feel ignored, disbelieved, and neglected.
On that fall day in 2009 when I received the test results showing H1N1, the weather was still sunny and warm in Maryland. The trees were still full and green. My surroundings didn’t match with my achy legs, pouty face, fever and chills. I didn’t want to eat soup and sleep while my friends were still going without jackets to the bars. I recovered quickly from the flu, but I had to drop one of my classes because the teacher would not allow me to make up an assignment that I missed while sick. There was no mercy for someone with the swine flu – and I had only missed one class.
I recovered from the virus but never shook the exhausted feeling. I woke every morning feeling as if I had never slept, as if my body had spent all night fighting invisible battles. One of my professors took notice and asked me if I was ok. I remember telling him that I just can’t wake up, I don’t know why, and he suggested that I stock up on Red Bull and push through. So I did.
I spent the next 9 years pushing through. First, I thought my symptoms were caused by my thyroid. I was diagnosed with Hashimoto’s, an autoimmune condition where antibodies attack the thyroid, resulting in hypothyroidism and I was hopeful that thought thyroid medication and diet changes would solve my lingering fatigue issues. My thyroid levels finally stabilized in 2015, but I suffered crashes in 2015 due to mold exposure and in 2017 due to a traumatic ankle injury that was misdiagnosed for months before requiring surgery.
I did a sleep study that came back normal. I did blood tests and urine tests. I had CT scans and MRIs. My symptoms waxed and waned. Nothing showed up on test results, so my doctors kept insisting that I was fine, and I kept pushing through. I see this theme over and over in the stories of the #MillionsMissing.
Finally, in February 2019, I was diagnosed with ME/CFS, more than 9 years after my initial infection and 8 years after I initially sought treatment. This diagnostic delay made my case of mild M.E. become moderate-to-severe. If I had learned about pacing sooner, I would not be housebound and disabled now.
For nearly a year prior to my ME/CFS diagnosis, my primary care doctor had been urging me to reduce my hours at work or find a different job and I refused to listen. Now, my body was forcing me to listen.
Joining the #MillionsMissing
This time last year, I had just returned from a trip to Greece with my husband. The second night there, I slept 14 hours straight. I didn’t even wake to use the bathroom. Still, I did not wake feeling rested. Leading up to the trip, I kept thinking to myself, just get to May, you can relax on vacation, and you’ll be rested to return to work. I struggled to walk from the hotel, up the cliff to the road in Santorini. I could only leave the hotel once per day and when I returned to the room, I was there for the rest of the day. I used to be the one who had a list of sights to see and wanted to venture out until last call at the local pub, but not anymore.
Still, the vacation was amazing. Greece is beautiful. The locals are wonderful hosts. The scenery is unrivaled. The sunsets are spectacular. The history is almost unfathomable. I enjoyed every second of it, even when I couldn’t leave the hotel in Athens, we could climb to the roof and take in views of the Acropolis. I didn’t know it then, but I was learning to be content in the moment.
I returned home from that vacation nearing midnight on May 6, mulling over asking for workplace accommodations, days before #MillionsMissing 2019. I had left my doctor’s office a few months earlier with scant information. I was told that ME/CFS is “mysterious,” and that my new neurological symptoms had to be part of something new and undiscovered (they are part of ME/CFS). My doctor still refers to it as chronic fatigue syndrome.
I came home and saw the #MillionsMissing tweets and posts. I saw my experiences mirrored by countless other people from around the globe. I was captivated.
I felt validated that it wasn’t just me that couldn’t be fixed by endocrinologists, gastroenterologists, rheumatologists, neurologists and infectious disease specialists. They each were focused on one symptom, but nobody could see the full picture. The cognitive issues, post-exertional malaise, orthostatic intolerance, gastrointestinal issues, widespread pain, flu-like feelings and autonomic issues are all symptoms of M.E. This is a multi-systemic, neuroimmune condition. I finally had an answer. I knew I wasn’t alone. I knew I wasn’t some anomaly, a medical mystery, or an extreme case of hypochondria.
I returned to work, unrefreshed from my dream vacation and noticed my cognitive functioning rapidly declining. I couldn’t remember tasks I was supposed to complete at work. I was missing deadlines. I could no longer multitask. I couldn’t finish all of my work. I couldn’t wake up, no matter how early I set an alarm or how much sleep I got the night before. I routinely went to bed as soon as I arrived home from work at 6:00 pm and slept until 8:30 the next morning, showing up late to work. I was skating by, but I knew the time was nearing where I had to disclose to my employer what was happening with my health. I requested accommodations but was unable to work from home or reduce my hours, so I continued to push through until July.
I developed a low-grade fever and my doctor found that I had reactivated Epstein-Barr Virus. I don’t know when my initial infection occurred. Even when I had a diagnostic test to prove that this wasn’t in my head, I still faced disbelief from an infectious disease specialist who said, “I can tell by looking at you that you’re not sick,” and suggested conversion disorder (the modern equivalent to hysteria).
Once EBV reactivated, everything else seemed to fall apart. I felt forced to take short-term disability leave. I couldn’t finish out the planned period of two weeks before the leave would begin and spent days in bed, unable to move or speak, severely impacted by the smallest bits of light and sound.
I improved a bit and I really wanted to return to work. I worked for my favorite NFL team and sacrificed a lot of time, energy, and money that could have been made in a higher-paying profession. I have a huge emotional tie with the city and the team that I grew up watching, so it was exceptionally hard to let that go. My identity was wrapped up in being a sports fan and being a part of that team, but I had to sacrifice that for my health.
I tried going into the office throughout the fall and couldn’t manage more than 2 or 3 hours. I was granted permission to work from home, but couldn’t manage more than 15 hours per week, and that’s all I could do. When I worked for 3 hours a day, I spent the rest of the day recovering from that effort. I had to give it up. I am now among the millions that are missing from careers, missing from school, missing from the lives we used to lead. All because of a virus – or in my case, two viruses.
Living with M.E.
When I say, “I have M.E.” I am received with blank stares. If I say, “I have chronic fatigue syndrome,” I’m met with skepticism and eye-rolling. And this isn’t just from friends and family, it’s from doctors, too. Once, a doctor replied, “What’s N.E.” using the incorrect initial, and then said, “Oh, fatigue is easy to fix, I’ll run some tests.”
I want to live in a world where it truly is that simple – where we can run a test, show M.E. and receive advice for pacing, rest, and other yet to be discovered treatments, rather than a harmful prescription for exercise, positive thinking, and pushing through the fatigue. I want to live in a world where I can say, “I have M.E.” without having to also explain my symptoms every single time. I am hopeful that one day, we will get there. I think back to this time last year when I was one of those people who would have asked what M.E. is and it was in my medical chart.
Throughout my long delayed diagnosis, I became an unreliable narrator of my own health. Doctors couldn’t tell me what was wrong with me, so people surrounding me began to disbelieve me when I couldn’t tell them what was wrong with me. None of the treatments I tried worked, so it seemed that I was making things up. That’s the biggest burden I face with this illness. The stigma and disbelief.
The stigma of chronic illness is all about the fallacy of control. Control is an illusion. Your health is more than just the sum of what you eat and how much you work out. You can make all the right choices and try as hard as you possibly can and still see your health decline. Your health is not a reflection of your value. Your health is not a reward or a punishment. Your health is not a choice.
In my own chronic illness journey, I am constantly reminding myself that I can only control so much. I can’t control what other people do, even though their choices may impact my health. I can’t control many aspects of my health. M.E. is unpredictable. I can do everything right, pace myself, eat well, stay hydrated, and still end up in a flare. Just when I had found some semblance of stability with my symptoms earlier this year, a global pandemic erupted and I have been in a flare since March.
I suspect that I again reactivated EBV, in part due to the stress of this pandemic. My temperature reached 100 degrees for the first time since 2012 and I panicked. I monitor my symptoms daily. I take my blood pressure and monitor my heart rate throughout the day. I monitor my temperature often enough to know that my average is 97.0 and when I woke in a cold sweat and my temperature read 99.1, I was worried.
I have all of the symptoms of COVID on a semi-regular basis, due to M.E. and hypogammaglobulinemia, a type of primary immune deficiency that explains my constant sinusitis. My COVID test was negative, but there is concern about the potential for false negatives, according to research from the Cleveland Clinic. Due to my strictly housebound lifestyle since early March, I think it’s unlikely that I had COVID, but this pandemic has still been disastrous for my health.
While I’m in an active flare, I have about an hour a day where I can function as a somewhat normal human. The rest is spent in a daze, as though I’m constantly peering through a misty fog to try to access my thoughts, words, and memories. I spend 98 percent of my time in my bed or on my couch, but this isn’t a melancholy tale. It’s just my life.
I meditate. I practice breathing and realized that I truly have forgotten how to properly breathe. I snuggle with my dog and my cats. I turn on familiar shows that don’t require my cognitive energy. I write and read (when I can). I sit on my deck when it’s sunny. I message my friends. I video call with my 4-month-old nephew. I drink a lot of water. I truly enjoy doing all of these things. I focus on things I truly want to do. My energy is so limited that I cannot waste it on things that I don’t want to do.
I have to be extremely mindful of my energy buckets and what is being spent on physical, mental, and emotional tasks. I severely limit my physical energy spending so that I have more energy for mental tasks. If I am emotional, I won’t have energy to use for anything else. It’s an extremely delicate balance. Again, it’s also very hard to control.
The hardest part about M.E. is the payback we receive for doing things we enjoy. I love to read and I love to learn. I want to research and learn as much as I can about my illness, about viral pathogens, about COVID, about treatment options. But I can’t. If I have some mental clarity one day and spend some time reading scientific papers, I will pay for it the next day with a migraine, light sensitivity, sound sensitivity, extreme fatigue, muscle pain, and the other myriad symptoms of an M.E. flare. I was a stellar student and now I can’t focus on topics that interest me.
I want to read books and enjoy new shows, but I can’t focus on new stories or absorb new information, so I replay familiar shows and read or listen to the Harry Potter series for the fifteenth time. I want to play Animal Crossing, a video game where I spend time watering virtual flowers and shopping for clothes, but I lose coordination in my hands and fingers, I’m too sensitive to play the sounds, and my vision becomes blurry if I play too long.
I want to write articles like this one and gather stories similar to the ones I shared here. I’ve been working on this for 49 days because the periods where I have the mental clarity to recall words are few and far between. I still feel that I’m not articulating everything I want to say, but such is life with ME.
I want to go out with friends and dance until the bar closes. I want to go out into the woods and hike on a trail with my dog for hours. I want to go into the ocean and have the energy to ride the waves. I want to be careless and reckless and not have to think about my body and my symptoms for just a few minutes. I want to do so much.
Rest and pacing are the only options for managing M.E. I had to learn how to do nothing. I have to force myself to do nothing, without the positive reinforcement of feeling better the next day. I have to do it now, so that I won’t feel so horrible that I can’t speak or move the next day.
How do you manage an illness where idleness is the only treatment? Do you know how hard it is to do nothing when we have been conditioned our entire lives for the opposite?
We caught a virus and we never recovered
Back in March, when COVID was just beginning in the U.S., I took to Twitter and Instagram to ask who contracted a virus and never recovered. The replies were staggering.
More than 250 people replied with stories crossing a spectrum of viruses and bacterial infections and a wide range of chronic illnesses. I learned about some chronic illnesses I had never heard of, like HATS, cyclical vomiting syndrome, and thrombocytopenia. I was surprised to see some well-known illnesses represented, including Type I Diabetes, Crohn’s, ADHD, Vertigo, MS, Lupus, Rheumatoid Arthritis, and Celiac, and to see people with genetic diseases, such as EDS, say that a viral trigger caused their symptoms to present. As I anticipated, some of my comorbid conditions that surfaced after my initial viral trigger were also present: POTS, small fiber neuropathy, urticaria, migraines, fibromyalgia, and Hashimoto’s (autoimmune hypothyroidism). Some remain undiagnosed and their illness is just as valid. I was among them for nearly a decade.
I suspected that I would hear from a lot of people with ME/CFS, but I was shocked that among the 187 people who shared their diagnoses in the replies, 114 were people with ME/CFS. Many people remained ill after an initial infection of Epstein-Barr Virus, which causes mononucleosis. EBV is so common that nearly the entire population carries antibodies, but not everyone develops the acute symptoms of mono, and fewer develop chronic issues.
Many other viral and bacterial infections were cited, including the flu, some specifically citing H1N1, coxsackie, varicella-zoster that causes chickenpox and shingles, viral labyrinthitis, norovirus, typhoid fever, HHV-6, Ross River virus, dengue fever, rubella, parvovirus, echovirus, and more.
Many people who replied shared with me that they feared people not taking COVID seriously. They all experienced a virus changing their lives – some people say ME/CFS is like losing your life without actually dying. With so many different viruses causing such a wide array of chronic symptoms, we should be concerned with the potential long-term effects of COVID-19. This has implications across a wide range of chronic illness and disabilities.
One mother shared the difficulties she and her son Zack faced following a viral infection. “My son lost the use of his left foot,” Heather said. “According to the neurologist, it was certainly the result of the virus we had one month prior to symptoms.” Zack is 13 years old and has been through intense physical therapy. His right leg has recovered, but he is unable to lift his left foot and has chronic pain due to tendinitis in his foot. “He cannot run anymore, he cannot ride a bike,” Heather stated via email. “He has had many falls and once fell down an entire set of stairs. On good days he can walk the dog without the worry the dog will pull him down. People taking this virus lightly make me sick.”
Viruses can cause lifelong damage. Not only can COVID leave healthy people gasping for air, hooked up to a ventilator, or in the grave, it may also leave formerly fit, energetic people trapped in dark rooms, like those with ME/CFS have been for decades. With so many various viruses causing the same set of symptoms, I am encouraged and hopeful to see that the Open Medicine Foundation is initiating research to study COVID-19 patients and track the potential onset of M.E. symptoms.
Danielle Warner wrote that her M.E. was triggered by Epstein-Barr Virus 11 years ago. “I lost everything to this virus – my job, my life, my ability to even stand up or leave the house most days,” Danielle shared. “I couldn’t even get out of bed or feed myself at the beginning. I spend every day in pain because of this virus.”
Emma also remained ill after developing mononucleosis from EBV in 2009. “Eventually I passed the illness, but it took a few months and I never really bounced back. Over time, my schooling really suffered and I started to fall asleep in my classes – in sort of micro-sleeps. I couldn’t stop them,” Emma recalled. She had to leave her polytechnic degree, where she was studying network engineering and became disabled due to M.E. in 2012. Her autoimmune illness and thyroid condition also presented after viral infection.
Alison Atkin developed pericarditis, which led to chronic tachycardia, and ME/CFS following what she describes as “a wicked case of the flu,” in 2017, at the age of 31. “I was a fit, healthy, energetic, young human being. There was nothing to suggest I would be at a higher risk of complications from the flu (or any other virus).” Atkin said.
Sophie fell ill with a flu virus in 2016, which triggered an autoimmune reaction. “This virus caused my immune system to go into overdrive, killing off my cranial nerves on the left side of my face and causing weakness on my left side for 4 months,” Sophie said. She was unable to walk, speak or swallow and had blurred, double vision. “Now, I have ME/CFS and POTS. These may be life long.” Last year, Sophie caught H1N1 and developed thrombocytopenia, very low platelets. That infection caused an M.E. flare that she is still battling.
Lee Blackwood fears the impact that COVID would have on his M.E. symptoms and the likely increase in the numbers of M.E. cases worldwide. “I have moderate/severe M.E. and it was triggered by a nasty viral ear infection 2.5 years ago. I’ve also had swine flu, from which I never 100 percent recovered from. I’m very wary of catching any virus, nevermind this one, because they have left me disabled.” Blackwood added, “I reckon this virus will cause an increase in M.E. cases and I feel the need to raise awareness.”
Oliver has been chronically ill for about eight years. He was initially diagnosed with post-viral chronic fatigue syndrome, then later, with fibromyalgia. “I usually say I have fibromyalgia as I think it sounds better than “chronic fatigue,” which people might take to mean I’m just clinically lazy.”
Oliver’s initial viral infection was so mild, that he didn’t even take time off work from his retail job. In the weeks and months that followed, his physical health gradually declined. “Everyone gets tired and everyone has aches and pains, but mine just kept increasing, without any obvious cause.”
Oliver wrote that after months of diagnostic blood work, the doctor found that he had been infected with Epstein-Barr Virus, issued the diagnosis of post-viral chronic fatigue syndrome, and sent him on his way with no treatment options and no information. This is a common experience for those diagnosed with ME/CFS.
As his symptoms progressed over the next few years, he had to give up work and was only offered pain relief as a treatment option. “Other than that, I’ve been told to exercise and think positively. I’m extremely limited in what I can do. I like to cook. If I spend, say an hour making a meal, then that’s it. I’ll be in an awful lot of pain just from that and can’t do anything else that day. I can walk for about ten minutes before the pain gets too much.”
Oliver also expressed fear surrounding COVID-19. “I’m worried about COVID-19 as a second infectious disease might make my symptoms worse. Or it might not! I know next to nothing about this illness as nobody can tell me anything.” He added, “It’s even occurred to me that this could mark a turning point in a good way, if a huge swathe of people get this illness after COVID-19, maybe people will take it seriously and there’ll be proper funding to find out why this happens and what we can do about it. I’m aware that’s a horrible selfish thought, but there you go!”
I have been ruminating on these topics, like Lee, Oliver, Heather, Sophie and many others. We were all healthy, with no preexisting conditions, before viruses gave us these conditions. It shouldn’t take hundreds of thousands of people dying in a pandemic and millions more remaining chronically ill for those with ME/CFS to get the answers we’ve desired for decades. I feel selfish to think of my own needs and the needs of those with my illness, but while the entire world is focused on COVID-19 and the effects of a novel virus, I am finding a lot of hope in the possibility that this virus could provide the opportunity to study an outbreak of M.E. at the onset. The Open Medicine Foundation wrote, “The likely conversion of thousands of patients to a disease that causes life-long suffering provides an unprecedented opportunity for the world to finally pay appropriate attention to ME / CFS.”
Meeting this moment: COVID-19 & the potential for a new outbreak of M.E.
The CDC lists “new confusion or inability to rouse,” as a symptom of COVID for which you should seek medical attention. I sought medical attention for that symptom for nearly a decade and I still don’t have access to treatment for those symptoms. I am on my own, trying to manage my rest and pacing.
I fear what will happen to COVID survivors, following the CDC guidelines and seeking treatment for these symptoms, which may be attributed to ME/CFS in some cases. It’s disconcerting that many of the symptoms of COVID overlap with my daily symptoms of M.E., including shortness of breath or difficulty breathing, chills, repeated shaking with chills, muscle pain, headache, sore throat, and loss of taste or smell.
I have the privilege of being a middle-class, college-educated, white woman who is generally trusted when speaking about these topics. This issue is even more pronounced in communities of color that have a higher prevalence of ME/CFS, but are least likely to be diagnosed with ME/CFS when they meet the diagnostic criteria.
“Clearly people of color do get this illness, and there are some myths that you have to be white middle class to have ME/CFS,” said Dr. Leonard Jason in his groundbreaking study, which showed that of those youth that screened positive for ME/CFS over the phone, less than 5% had been previously diagnosed.
Couple this with the fact that people of color are bearing the largest impact of COVID-19 and we are facing a massive health crisis in America – and it’s not just a chronic health crisis, it’s a social justice issue.
We need people to understand that public health is everyone’s responsibility. We need people to understand that the impacts of COVID-19 are much broader than the numbers being tracked for cases, deaths, and recoveries. Right now, on May 12, the totals on the Johns Hopkins COVID Tracking Map show more than 1.3 million cases, 80,000 deaths and 230,000 recovered in the U.S. In order to see how many people are sick, we have to do the math ourselves. Right now, 990,000 remain ill with COVID-19. What will happen to those that don’t migrate into a new column?
To COVID survivors, here are some things I wish someone had told me when I first got sick with a virus and noticed that I wasn’t recovering as expected.
- The harder you try, the worse you will feel. It goes against everything we are taught as Americans, but you have to slow down, listen to your body, and learn to do nothing. Doing nothing is the hardest thing I’ve had to learn to do.
- You didn’t do anything wrong. You don’t deserve to be sick. You don’t deserve to stay sick. This isn’t a choice you are making. This isn’t a moral failure on your part. (Exception: those that were out protesting stay at home orders – you did something wrong. But you still don’t deserve illness, nobody does).
- Your value doesn’t lie in what you can do for others, your value lies in just being you. Likewise, your identity isn’t tied to your career. There are many aspects of your identity that already exist and many that you may find in the future. Identifying as disabled has given me a powerful community.
- Your work isn’t just what you are paid to do. Especially for women. Unpaid work is extremely valuable and necessary for our society. Our society doesn’t value unpaid labor, but we need to be better.
- This is really hard. It’s going to be hard. Try to go easy on yourself, give yourself a break, and show self-compassion as much as you can.
- Rest as much as you can. It’s so hard to learn to do nothing, but practice doing nothing.
A message of hope
This illness is brutal, but this is not a melancholy tale. Despite this illness, we rally from our beds. The disabled community shows the power of mutual aid. My experience this past year shows how important online support spaces can be. Even though I may be isolated physically, I feel connected with other people more than I ever have been. This is a valuable lesson now that around the globe people are living in isolation with Stay at Home measures.
Jen Brea made the film Unrest from her bed. We are having 2020 #MillionsMissing virtually from our beds. We are showing how much we can do from bed. Now the world is seeing a glimpse of what happens when a virus disrupts your life and they can look to us to see how to cope when a virus turns your entire world upside down – or in our case, horizontal.
Workplaces and schools are now accessible from home. Telemedicine is becoming the norm and many doctors are embracing it, including a few of mine. I can now have an appointment with my doctor without crashing for two or three days afterwards! Grocery pickup and delivery access is being expanded. The access needs we have been fighting for aren’t just for us – they make life easier for everyone.
I keep hearing people say, we’re all in this together, we’ll get through this together, but that isn’t true. Everyone is experiencing this pandemic differently and many people are being left behind. We might only get through this together if we take those most vulnerable and follow their lead. I ask you, reader, to amplify the voices of disabled people, people of color, people with chronic illness, LGBTQ people, indigenous people, and other marginalized groups at this time. Amplify the voices of people with ME and in turn, we will amplify your voices. Listen to our stories and learn from our struggles so that things will be easier for the next generation of patients that develop chronic illness following COVID.
It’s so hard to remain hopeful when you read the news stories, particularly now, during this crisis, but I still hope. I hope that we can recover from M.E. I hope that researchers can determine the pathology of this illness, find a biomarker, and create treatment options. I hope that scientists quickly find a vaccine and better treatment options for COVID. I hope that states reinforce social distancing guidelines that have been proven to work. I hope that my neighbors keep themselves safe and in turn, keep each other safe. I hope that the accessibility offered by businesses that are allowing employees to work from home will continue when supporting needs of disabled employees. I hope that people will become more empathetic and less selfish. I hope that we can support each other through mutual aid and receive adequate support from our governments. I hope that those that are undiagnosed with chronic illness find the answers and validation they are seeking. I hope they know that they are not alone. I hope that we can all find small moments of peace within the chaos of this global event. I hope that through the interconnectedness this moment brings, we can elevate the voices of those most affected. I hope that we can find ways to manage our symptoms. I hope that we can heal.
I want to be inspiring because that’s what audiences want to hear. What’s inspiring to me is someone who persists. This isn’t a neat story with a beginning, middle, and end with a nice bow and a return to normalcy. That’s not inspiring to me. I’m inspired by the #MillionsMissing who embody resilience, perseverance, and persistence – not because we are being rewarded, but because we must. It’s painful and it’s exhausting, yet we persist – and that’s inspiring and that’s what gives me hope.
Want to help?
We need all of the support we can muster. You can help by following the hashtag #MillionsMissing and by liking, commenting, and sharing our posts on social media.
If you are able, please consider making a donation to the #MEAction Network to support our call for urgent action to mitigate the pending chronic illness crisis. As well, please consider a donation to the Open Medicine Foundation, which raises money and accelerates the research required to tackle the global health crisis that is Myalgic Encephalomyelitis.