After getting vaccinated, I was no longer afraid of COVID-19. I am an emergency physician at a downtown academic hospital in Toronto. Acute infection with COVID now likely would be no more than a cold or flu for me.
I went to work with confidence that personal protective equipment (PPE) would provide another layer of protection. I felt incredibly grateful for immunization and how quickly we had access.
But as a woman in my 40s, I learned to be afraid of long COVID – and for good reason. The first reports of long COVID came out of Italy in June 2020, when most of us were still learning to don PPE. The Atlantic has covered long COVID eloquently throughout the pandemic. While there is a growing awareness of the scale of the problem, the root cause remains shrouded in mystery.
Even before the pandemic, several women I knew had “disappeared” from their social and work lives in their 30s and 40s, consumed by some form of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome after an infection. Post-viral syndromes may affect more women because our immune systems are built for reproductive purposes and are more likely to become dysregulated after seeing a novel pathogen like Lyme, or COVID-19.
What is worse, women are less likely to be taken seriously than men, especially with multi-system complaints that cannot be verified by objective testing. Some women have described this gender bias as “medical gaslighting,” where their persistent, debilitating symptoms are labeled as anxiety, not unlike the historical diagnosis of “hysteria.”
Long COVID symptoms now dominate my life, hopes and dreams. They’ve done so for the past six weeks. I am writing this piece in the morning because I will be back in bed by noon. I am writing now because the “fog” has lifted for a little while; often it is difficult for me to put one word in front of another. I am writing now because I may forget later. I am writing now because the constant headache and breathlessness often worsens as the day wears on.
As soon as I realized that I wasn’t getting better after my COVID infection, I went looking for answers. My identity as a mother, as an active and social person, as a physician, as a researcher, as an advocate all feel so deeply threatened by relentless fatigue, cognitive impairment, headaches and the latest, hyperacusis, which means I cannot sit through a meal with my family listening to the scratching of forks on plates. The stories of these women by Time Magazine were both validating, and deeply sad. I would do anything to not be like this for the rest of my life.
I found myself on Reddit immersed in scientific papers, anecdotes, hope and hope lost.
I found myself on Reddit immersed in scientific papers, anecdotes, hope and hope lost.
The mast cell hypothesis was very attractive, as it seems treatable, and I started an antihistamine, just in case. “Sticky platelets’” are thought to cause hypoxia to tissues and the brain, and are driving people to spend tens of thousands on apheresis in Germany. Anecdotally, they tend to get much better, and then back to their miserable new baseline again in two weeks. I started taking aspirin, just in case. The mitochondrial dysfunction seems very difficult to “fix,” but like other desperate people, I’m taking Coenzyme Q10 and NADH, just in case.
The inflammatory hypothesis leads down a long road of supplements and dietary “solutions.” Turmeric/curcumin because why not? I’ve been meaning to eat more turmeric anyway. So much celery. Resveratrol is in grapes, but too many grapes would undermine my low-carb, high-fat diet and intermittent fasting, both magical cures purported to cure everything – so resveratrol in pill form, there goes $30. Alpha Lipoic Acid because of oxidative stress. So many omega-3s. N-Acetyl Cysteine (NAC), another antioxidant that we use to save the liver and the lives of people with acetaminophen overdoses, is now part of my daily routine. I’m not sure why, but there was some evidence for people with HIV in the 80s, so that’s good enough for me. Because like everyone who is living with this, I am desperate.
The viral reservoir hypothesis resonated with me and led me down a deep hole in my search for a cure. Is there a live virus in hidden reservoirs – wonderful! That is treatable! If there is a dead virus or fragments, that is also potentially treatable! This is certainly what long COVID feels like – waves of virus launching waves of cytokine release. I quickly lost hope, realizing that the only way to access Paxlovid would be enrolling in clinical trials that were still in the planning stages.
Which leads me to today.
I am trying to come to a place of acceptance. I still hope to escape chronic symptoms, but I have found other people’s stories validating and helpful; I want to help do that for others. I have seen one of the world experts on this subject, and the only thing we know helps is rest and pacing. I am taking more time off work. This is very, very hard for me to do as it is so much of my identity and source of joy and purpose. I am buying earphones to help with my neurological symptoms.
But save your money, except the antihistamine, in full recognition that “Self-management of symptoms in the long term is often costly, with some individuals using a substantial proportion of their income, which threatens to widen existing health inequalities.” I am trying to be patient, as so many others are, waiting for solutions in the shadows as this “acute on chronic” phase of the pandemic rages on.
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There’s a level of irony in an emergency doctor getting Covid then long Covid and writing about it in telling her story. As a long hauler, I do appreciate the effort it took to write this. Yet, I can’t tell you how many doctors still dismiss long Covid to this day. How many frustrated patients have to deal with this medical ignorance, lack of empathy and basic knowledge more than two years in? It’s disgraceful and prevalent at some of Canada’s most well known hospitals including St. Michaels. More physicians need to step up and call this behavior out, colleagues or not. Patients also need to speak up if emotionally able. Hoping for change.
Thank you for sharing. I have a granddaughter struggling with similar symptoms and experiences: mid thirties, intelligent, had to give up job. Your description duplicates much of hers and feelings of hopelessness. Your article has helped each of us.
Maybe try NMN (cf David Sinclair) ?
Thanks for your article.
I appreciate you sharing your story. I know You must have had a hard time.health check up
Thank you so much Dr. Hulme for summing up every aspect of what we are going through. Grief & acceptance. I see you.
Nobody trusts medicine When
They ignore ALL the flu remedies of the past.
Bought and paid for by Big Pharma.
Hippocrates called Elderberry his medicine chest.
Health food stores have many many others that work well too.
I don’t expect this comment to pass your editors. Nope
Medicine has lost its way and physicians stop looking for the root cause of disease. Historically , infection was usually found to be the root cause. The paradigm today is to name it and treat it. Shareholder preferences control things and shareholders are no longer interested in cures, vaccines or new antibiotics. Once a disorder has been labeled as idiopathic or the symptoms somatoform there is little incentive to look further. In the case of ME/ CFS researchers don’t know what they are looking for and are looking in the wrong places. Amy D. Proal PhD is a microbiologist breaking through the walls of medical silos. You can find Amy and the PolyBio Research Foundation interviews on YouTube. It is felt by many that these infections live on in tissue reservoirs but we don’t have money for basic research to train medical sleuths to do the fine tissue research required. In the case of persistent or complex disseminated Lyme we have a low-abundance, slow dividing long-lived stealth pathogen with many defensive strategies that can hide from our immune system inside our neutrophils and in biofilm and inside our brains. Anybody can say anything. Steven E. Phillips, MD has written “Chronic, the Hidden Cause of the Autoimmune Pandemic..2020” and “Crypto Infections: Denial Censorship and Suppression – the truth bout what lies behind chronic disease 2021” explore the topic of these “crypto” infections in depth.
Long Covid is almost identical to Chronic Fatigue Syndrome, which is now called Myalgic Encephalomylitis. The reason for the name change is that the medical establishment did not believe that it was a valid disease and has been gaslighting patients with this disease for decades. They have chosen to ignore the W.H.O., the C.D.C., the N.I.H. and numerous other health research facilities. They caused great suffering to these people, of which I am one.
Now that many of the healthcare workers are getting ” Long Covid” , it is believable. The science on M.E. Has been compared to Long Covid in a study in Germany and found to be almost identical. It is about time that healthcare professionals and their academia start pulling up their bootstraps and start practising medicine based on science, not “guess medicine”. I no longer rely as does millions around the world, on care from doctors or hospitals, as their is very little care and attention, just assembly lines. Time for medical schools and the medical system to clean up their entitled behaviors and “do no harm”. I wish all long Covid sufferers the best and encourage them to seek out M.E. groups where average people teach each other about the science that helps.
I got COVID in April 2020, I am in my 20s, have always been relatively healthy, and I still have Long COVID symptoms now (my cardio pulmonary endurance is still trashed, but I can walk up a hill without needing to sit which is improvement). Thankfully, my most debilitating symptoms of brain fog, intense fatigue, reduced memory, migraines, severe depression, and lightheadedness did alleviate after about 16 months. But for the entirety of that time, I could barely take care of myself – I would forget what I was doing in the middle of doing it, a single load of laundry exhausted me for 2-3 days. It took me until the worst of the brain fog lifted over the summer of 2021 to even realize that I had had Long COVID because my family doctor attributed my impaired cognitive function to depression in May 2020 before anyone knew long COVID was a possibility.
I am now back to full time work, rebuilding my physical health and so much more protective of my health and energy than I ever was before. I have serious doubts my lung capacity will ever fully recover, but overall, I am back to as close to normal as I can imagine. Even if the Long COVID symptoms persist for what feels like an eternity, there is hope for improvement. I hope we see more research and treatment options for this, because it’s truly awful and debilitating and I wouldn’t wish it on anyone.
I was dx with cfs and me back in the mid 2000’s. I am so sorry that this is what is happening to people. It is an awful disease. I have been dx’d with 6 other autoimmune diseases since because of you have one, you most likely have two or five. Keep up with the ketogenic. I’ve been doing it 4 years (I ve added rice flour once a month to my diet as a cheat but have had no bad reactions, also been fat adapted for over 3 years now so it wouldn’t harm the process Sending
Sad but important perspective. Famotidine is also being looked at —H1/H2 blockers in combination.
Thank you for your post.
Wishing yo a full recovery, Dr. Hulme.
It’s a year and four months now and I am still struggling with long covid fatigue. The doctor, work place and the government are very nasty towards some people who had covid. I’m living my life by drinking lemon and ginger, walking and running a big problem with the breathing.
I think it is safe to say that everyone by this time has been infected with Covid. Those that are unwanted and those that are vaxxed and multi- vaxxed. As for long Covid, there is only one solution. We need to have faith and trust in God. Forget about all those pills and vitamin supplaments. Keep a normal healthy diet and lifestyle and stop living in fear. When God decides it is your time to leave this earth, he will also decide how your end on earth will come. In the meantime he wants you to be happy and by acknowledging him as your creator and father who loves you, and trusting in him, you will find that happiness and you will start to notice that you are feeling better and all these symptoms of long Covid are no longer an issue in your life. Pray to God for help and trust that he will answer you.
Omg I take it you don’t have long haulers. You have no idea what we are going through. How we are suffering.
So if I acknowledge God my symptoms will poof go away. You my dear are very wrong.
Why do you dismiss this person’s faith and beliefs in such a condescending manner? I believe what he says is true, as do many other people.
(Why do you use ‘OMG’? It should only be used when praying).
But god gave it to you, to “test” you, so why do you now think if you trust in him, all the sudden you will be magically cured. No magic sky daddy is not going to help, you need to help yourself with diet, education getting the proper medical team.
Religion is like a it fine to have one, it’s even great to be proud of it. But please stop whipping it out on public and don’t you dare put down my kids throat.
I had breast cancer 18 years ago and was very stressed and anxious. Someone close to me said: “Give all your cares and worries to the Lord”. I prayed to God to ease my burden somehow. I did not pray for a cure – I prayed for peace and acceptance. All the stress and anxiety disappeared. I no longer worried. I did not suffer from the side-effects of chemo as much as before. I was much more at ease. All I prayed for was peace for myself and my family, and a great weight was lifted off our shoulders. I could focus on getting well instead of being angry and resentful and feeling hopeless. My frame of mind and spirit were greatly elevated. I truly believe my ‘journey’ would have been much more difficult had I not placed my trust in God.
Man, did you ever drink the Kool-Aid! My daughter has been a long hauler since 12/2020. Here in the US there are over a million dead and estimates of up to twenty-five million long haulers. By some accounts fifteen percent of unfilled jobs are attributed to long haulers not being able to do their jobs. My daughter lost forty percent of her income and would be living on the street if it were not for the help, both moral and financial, that my wife and I give her. You must be sitting on a pile of money. I am surprised that you didn’t include an address for long haulers to send money to so you could “pray away” their illness. I am sick and tired of the gaslighting, lazy, and greedy medical society that is not listening to these victims suffering. All the victims want is to have the life they had before their illness so they could do God’s ( which ever god or none at all) work.
i got covid in my last year of highschool. I freshly moved out of a very abusive situation at home and got covid while living alone. i had underlying conditions and now i cannot work due to all of my sysmptopms leaving me with debillitiating chronic pain, breathing, and sleep issues. you are telling me my only option is to pray and accept death? im 20 now, i still feel like i am barely an adult. ive had these symptoms for almost two years. i go to church and pray often. this is terrible advice.
so now I’m wondering if maybe I did get COVID-19 or if I really have COPD??? All of a sudden last year I was Diagnosed with copd out of the blue, and 3 vaccine under my belt.
Thank you so much for sharing this. There are many in this situation and seeing others accept the uncertainty is comforting somehow. I am sorry you got struck with this thing.
Thank you for sharing your story. I know it couldn’t have been easy.