Yves here. Given that many who are convinced they are “long Covid” victims are treated skeptically by doctors, just as chronic Lyme disease patients often are, the data on this syndrome is even more spotty than on Covid-19 overall. But one estimate that there are as many as 70,000 in New York City alone should focus some minds, even before getting to the fact that this population appears to skew younger than Covid hospitalizations.
By Luca Powell, a J-Corps fellow from the Craig Newmark Graduate School of Journalism at CUNY, which is participating in “MISSING THEM,” THE CITY’s ongoing collaborative project to remember every New Yorker killed by COVID-19. Originally published at THE CITY on September 15, 2020
Maria Diaz, 31, says she still suffers from recurring fevers and chronic fatigue from the coronavirus. Courtesy of Maria Diaz
The illness was supposed to last for three weeks, doctors told her.
But weeks four through six of COVID-19 were the worst for Holly MacDonald. Her low-grade fever morphed into an all-around fatigue. She began having trouble speaking.
And when she stood up, her legs and feet turned purple.
“I’d walk too far and then I’d need to be in bed for three days,” said MacDonald, who is 29 and lives in Crown Heights. She had to take administrative leave from her job at a nonprofit where she builds social-media campaigns.
A month after getting sick in early March, MacDonald was back in the ER, frustrated as she tried to convince her doctors she was mired in her second month of what, she’d been told, was a three-week respiratory virus.
She’s still not fully recovered. MacDonald is one of upwards of 70,000 New Yorkers struggling with unexplained long-term symptoms of COVID-19, according to a range of estimates provided by several New York City-area doctors and hospitals contacted by THE CITY.
“The hidden number could be more,” said Dr. Zijian Chen, who directs Mount Sinai’s Center for Post-COVID Care. “We’re looking at patients who are still testing positive day to day, so this is a population that’s going to continue to grow.”
The growing numbers of so-called long-haulers underscore what patients and doctors describe as an increasing struggle on multiple fronts.
Patients who experience symptoms long after three weeks sometimes are hit harder by the physical ravages of the virus than when they first contracted COVID-19.
In some cases, patients say, their doctors don’t believe them. That can add to the struggle for those seeking to get their medical expenses covered — especially after losing work because of their illness or the pandemic-slammed economy.
Long-Lasting Symptoms
The stories of some New York COVID-19 survivors have challenged early conceptions of COVID-19 as a three-week illness.
They are the stories of runners who now need wheelchairs and yoga teachers with debilitating fatigue. Discharged from the hospital, they now find support in a host of online support groups where they try to piece together what it means to live with the lingering disease.
Chen came up with the 70,000 estimate, he said, based on data available by the New York City Department of Health and the U.S. Centers for Disease Control and Prevention. His center, which is designed around treating “long-haulers,” has already encountered 400 such patients.
Elmhurst Hospital employees pass a mobile testing lab, July 17, 2020.
A mobile testing lab in Queens Hiram Alejandro Durán/THE CITY
These “long-COVID” cases, as the Mount Sinai center describes them, appear to occur randomly — there’s no demographic category that is more likely than another to be struck.
Patients come in reporting fatigue, shortness of breath and difficulty thinking clearly. In some cases, the symptoms arrived months after the worst of COVID illnesses were over.
“This disease can be very devastating,” Chen said. “And a lot of the symptoms aren’t easily explained. It’s not something we have established knowledge on.”
Viral infections like COVID-19 can cause post-viral syndromes — a monthslong phenomena characterized by constant tiredness and trouble sleeping.
One of the few road maps for navigating the aftereffects of COVID-19 is the SARS epidemic from 2002. Studies found that some patients developed “Chronic post-SARS,” a syndrome that lasted for up to 18 months.
It feels “almost like a concussion,” MacDonald said. “‘Any kind of activity — mental or physical — triggers me into headaches that last three days.”
MacDonald suspects her COVID has developed into Postural Orthostastic Tachycardia Syndrome, also known as POTS, which can sometimes stem from viral infections. These are less common, but they do explain more severe symptoms, like her purple feet.
Hard to Return to Work
Dr. Aluko Hope, a critical care doctor who’s treating COVID-19 patients at Montefiore Medical Center in The Bronx, likened life with lingering illness to “accomodating to a new body.”
“It’s not like you’re going to fix it with one little pill and it’s all going to go away and you’ll be hunky-dory,” Hope said. “You’ll have to deal with multiple visits to different physicians. It’s much more complicated.”
At Montefiore, many of Hope’s COVID-19 patients say they feel like they’ve been knocked out of their normal rhythms.
“A lot of them will talk about just not being who they are,” Hope said. “It’s so completely inconsistent with how they lived their life before this.”
MacDonald said she’s lucky because she works at a computer most of the day.
“If I was working a physical job, forget it,” MacDonald said.
In early March, Maria Diaz became one of the first New Yorkers known to have contracted COVID-19.
Diaz, who teaches at Brooklyn’s Poly Prep Country Day School, left work on March 3 with a 105-degree fever. Well into the summer, she reported suffering fevers every few days, as well as chronic fatigue.
What baffles her is that doctors initially diagnosed her case as “mild.”
“What I was told was that this was an upper respiratory infection,” said Diaz, 31. “But I was having all these other symptoms.”
In some cases, the enduring symptoms were worse than the initial ones.
“Sometimes it’s the people who have the milder versions of this infection that end up having chronic versions,” said Lauren Stiles, an assistant professor of neurology at Stony Brook University who studies autonomic disorders.
Cost Deadlines Loom
The possibility of losing work and health insurance is doubly problematic for patients who’ve been in and out of hospitals since the pandemic began.
In March, many private insurers committed to waiving patient shares of costs for COVID-19 treatment. Those protections mean no out-of-pocket expenses for people with insurance. To qualify, a hospital needs to code a patient’s bill as COVID-19-related, otherwise insurers won’t take it.
For some providers, like Aetna, those protections expire on Sept. 30. Aetna did not respond to requests for comment.
Others, like Empire BlueCross BlueShield, recently extended that deadline to Dec. 31. A spokesperson said the insurer had identified nearly 2,000 patients with COVID-like symptoms through its “Post Acute-Care Program.”
“We are closely following the pandemic and monitoring the needs of our members, particularly those recovering from COVID-19,’’ said Dr. Craig Hersh, chief medical officer of Empire BlueCross BlueShield.
A man signs up for free coronavirus testing in Bedford-Stuyvesant. Ben Fractenberg/THE CITY
Chen called the issue of insuring long-COVID patients a “major concern.”
“Patients tell us their insurance itself is expiring, either through their work because of loss of work, or because they’re on COBRA,” Chen said. “Depending on how this pandemic turns and patients’ ability to work, their ability to get care is really going to be affected.”
And long-term symptoms still aren’t widely viewed as part of the disease, in part because some patients, especially ones infected in the early days of the crisis and at its height, were never tested for the coronavirus. Many “long haulers” say they’ve also test negative for antibodies long their initial illness, despite their symptoms.
“What’s really challenging is [the patients] look completely normal,” said Stiles, who has an autonomic disorder herself.
“It’s hard sometimes even for doctors to understand. And it doesn’t lead to a lot of compassion for [patients].”’
Both Hope and Chen said they were concerned about the capacity of hospitals in New York to treat long-haulers as the number of patients they treat continues to grow. Mount Sinai’s center struggles to staff enough doctors to meet patient demand, Chen said.
“That’s going to be a very, very large burden, to the health system, to the economy,” said Chen, “And at some point, it’ll be unsustainable.”
This story was originally published by THE CITY, an independent, nonprofit news organization dedicated to hard-hitting reporting that serves the people of New York.
23 comments
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So sad, too bad, best healthcare in the world.
At least they don’t have
like wretched Canadians.
I’ve heard informally from people I know who work from hospitals here in Ireland that they are experiencing a ‘second wave’ of patients who were treated for Covid in the Spring – all presenting with a wide range of symptoms, usually with fatigue and pains. Its become a significant issue as they really have no idea how to treat this – no doubt some of the patients are suffering more from stress and other issues associated with lockdown and isolation, but many seem to be directly related to the virus. There are significant worries that many will require in-patient treatment, so putting even more stress on hospitals as infection rates are rising rapidly here, and the flu season is incoming. They are all very, very worried. I’ve been told by more than one doctor to do everything I can to stay safe and healthy to ensure I don’t end up needing hospital care any time over the winter.
I don’t know how Ireland’s medical establishment responded to CFS/ME patients, but the UK took an it’s all in your head approach. The NHS still recommends cognitive behavioral therapy and graded exercise therapy. I guess somebody showing up with purple toes might convince them that they are dealing with something other than a psychiatric disorder.
Last year I had (for the first time in my life) a bad case of the flu, one doctor in Ireland diagnosed it to be psycho-somatic (much to the amusement of the people around me who heard my constant coughing) and since I had my doubts about that diagnosis I went to another doctor who said: Flu, go home, rest drink lots of fluids. Which I did and recovered after a week.
Six months later I suddenly felt very tired, my muscles got very weak, my powers of concentration were so bad that I couldn’t even follow a sitcom on TV, by two o’clock in the afternoon I struggled to keep awake and my mind was very very slow. It felt like I had aged 30 years in only 30 days.
Lots of tests, nothing could be found. The guidelines for doctors in Ireland:
https://www.hse.ie/eng/health/az/c/
Click on the link for Chronic Fatigue Syndrome and what I can see in my browser is almost unbelievable…. Possibly something due to my browser or computer or but still. (I see nothing there)
After many visits and many test then I got the impression that the doctor did not know what to do next. I believe that a referral to a specialist might have been appropriate. However, I asked if it would be possible to get a doctors note as I was in between contracts, did not have the energy to apply for many jobs and might need it if unemployment agency asked about why I was not working. When I asked the question about a doctors note there was a marked change of behaviour in the doctor and I suspect that the doctor at that time started believing that I faked all. At the time I did not have the energy for dealing with the (to me) unfounded suspicion so that was the time I decided to stop going to that doctor.
Anyway, what changed for me was when the lift in my building broke so I had to walk up seven flights of stairs. Shouldn’t be a problem but I barely managed. The day after doing that I felt better so I kept doing that, slowly I managed to increase the physical activities and improved but even now after a year I am not fully recovered.
What Krystyn wrote is probably true.
A metabolic disorder might be involved. For me, then since I have the symptoms to be expected from a metabolic disorder then I believe that what is affecting me is a metabolic disorder. Slowly increasing my exercise and also having cold showers is as far as I can tell what helped me get better. The cold showers triggered a response to increase the production of heat in my body – the heat generated is due to increased metabolic activity.
Anyway, what happened to me is only an anecdote and I’d recommend anyone experiencing similar to what I did to seek medical advice from a medical professional. No doctor knows everything there is to know about the human body and even though they might be embarrassed about not knowing everything the good doctors will do the research and possibly also refer on to a specialist. A bad doctor might gaslight the patient but if so then it is time to change doctor.
After reading what Krystyn wrote I found new possible approaches. This (and some medical articles) came up:
https://www.washingtonpost.com/news/to-your-health/wp/2016/09/06/chronic-fatigue-syndrome-may-be-a-human-version-of-hibernation/
The Chronic Fatigue page “under review” since June, 2017. That’ not good.
The article puts forth an interesting theory. The prevailing theory of those treating me is that it is that the disease symptoms are a dysfunctional immune system overreaction to the presence in the body of a virus that is part of the normal human viral load. It is simply a more or less ubiquitous and unavoidable virus or viruses to which most people are completely immune.
Whatever theory turns out to be correct, it is good to know that research is going on.
My local GPs in Edinburgh have been both sympathetic and pro-active. Had quite a battery of tests to eliminate other stuff, but ultimately reached the point where they have run out of options and nothing more they can do for now. Maybe helps that, as they said, I’m generally well so not seen as a malingerer.
Anecdotally they are saying they are seeing lots of fatigue cases, though many haven’t got a linked covid diagnosis. No such thing as coincidence…
“I’d walk too far and then I’d need to be in bed for three days,”
Wow, well I hope this all leads to a discovery regarding Chronic Fatigue Syndrome as well. All the symptoms these people experience are the same things my mother complained of for most of her life and she was “diagnosed” with CFS in the 90’s.
What they find consistently with CFS is a correlation with higher oxidative stress. This is something that can be solved with nutrition and high dose supplementation IMHO. My pet theory is that these people already had nutritional deficiencies which covid made much worse. Molybdenum, Riboflavin, Selenium, Zinc, maybe B6, their are several different vitamin cofactor deficiencies that could cause the same result; higher oxidative stress. In other words, this is a metabolic disorder of the mitochondria.
https://www.pnas.org/content/113/37/E5472.short
I am under treatment at Stanford for this condition. My treatment includes medications that are aimed at reducing chronic inflammation of the central nervous system. I’m actually taking a low-dose opioid antagonist for pain management and it has worked like a miracle, controlling chronic spinal pain that I’d been previously managing with opioids. As for the fatigue, the medications have reduced it but not completely gotten rid of it. Have you seen the film Unrest? Ir’s on Netflix.
As far as supplements, I am concerned about tainting and quality controls. Are there sources you would recommend?
Hi Lee, fellow ME/CFS patient here. I’m assuming you’re referring to low-dose naltrexone, but just curious what other meds have helped you? And who are you seeing at Stanford?
Thanks!
Currently seeing Dr. Hector Bonilla at Stanford.
I take Famciclovir 1000 mg/day; Naltrexone 1.5 mg/day; and Aripiprazole 0.25 mg/day. I get them at a reasonable price from Apothecary Options based here in California.
Interestingly, my cardiologist has become interested in low dose statin therapy for persons like myself who have shown signs of statin intolerance. So we are seeing how I respond to a super low dose of rosuvastatin.
There has been some research and theorizing about the possible benefits of low dose medication regimes.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5806381/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3017255/
If you can get any tests for nutrient deficiencies, do it. Zinc, Copper, B6, Folate, Homocystine, MMA, Gluathione Perioxidase, Biotinidase, are a few. They will not provide answers always, but will provide clues.
Low Dose Naltrexone has been shown to reduce oxidative stress:
https://www.sciencedirect.com/science/article/abs/pii/S030698770400578X
https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1478-3231.2007.01457.x
It seems to work by lowering Nitric Oxide production. But I feel the real problem is too many super oxides. I also wonder sometimes if the body just does not create enough endogenous opioids.
But to me it is not an answer, anyway, glad it helps you! I wish my mother had it when she was alive.
I like Source Naturals for supplements but most any brands are fine. Just do not go too cheap.
Thanks for the tip.
I do get periodic blood tests but I don’t know if they are looking for the deficiencies you specify. The people at the Stanford CFS clinic are open to looking in new directions, so I’ll mention this. I once tested low for B12. It turns out that this was caused by the very widely taken proton pump inhibitor, Omeprazole. I quit using it and B12 levels returned to normal.
Low dose Naltrexone induces higher endogenous opioid production.
Interesting!
I looked up a gene that creates some of these opiods (Enkephalin); PENK
https://www.uniprot.org/uniprot/P01210
Note that this enzyme also increase glutamate release and decreases GABA concentration in the striatum. This is important when it comes to excitatory inflammation.
Then I looked at my genetics and low and behold I have the changes in this gene that are linked to neuroticism and opioid addiction. So maybe this is what was going on with my mother and brother as well.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3382183/
Glutamate in my diet has always been an issue with me and heavy addictions in my family. And the PENK gene is also associated with Bipolar Disorder.
Thanks for posting!
One of the medications I take, see my comment above, is a very low dose of an antipsychotic used primarily to treat those with schizophrenia. I objected to taking it at first, telling my doctor that I haven’t had decent hallucination or paranoid delusion since some 50 years ago in my twenties. He responded that the medication has an anti-inflammatory effect on the central nervous system and will not interfere with any residual fine madness.
I have a bad feeling about this. Remember the decades long fight Vietnam vets fought to show that Agent Orange actually affected their health but the medical establishment wouldn’t be in on it. Or the Gulf War syndrome victims from the 1990s. Or those vets affected by the notorious burn pits in the past twenty years. If all those vets had and still have to fight the medical establishments to recognize their illnesses, then what will happen when ordinary people fight to have the problems that they encounter as ‘long-haulers’ be recognized as real. It may be that a determination has been reached to ignore these people as it would be too expensive to recognize them. The responders and survivors of the 9/11 Trade Towers can fill them in on what to expect.
Covid-19 is definitely a strange beast that seems to have serious symptoms/side-effects other respiratory illnesses don’t have. My spidey sense tells me this disease will be with us for a while and that an effective vaccine probably won’t be forthcoming any time soon.
Unfortunately we know it won`t go away but I`m not sure it`s really so strange. It seems that the strangeness lies in us – some of us have a bad time with it and I think we need to try and understand why. I think for some a variety of genetic factors are likely in play – like the suggestions above some leading to problems in metabolising some of the substances important in avoiding bad outcomes (also as suggested by some here, like Krystyn).
However, it does look as if our old friend vitamin D may be almost alone responsible for some of the poor outcomes. How many is still not being yet systematically investigated, though studies have been trickling in for months now – add those to the known involvement of lack of D in the development of ARDS. its crucial role in an effective innate immune response indispensible to keeping the viral loads in check while the antibody factory gets its act together. All this is necessary but the next step is also key. The role of D in preventing cytokine storm, protecting the endothelium from oxidative stress (the superoxides mentioned often by Krystyn). D does the same for the alveolar epithelium. Then it has a role in the Bradykinin system that some think explains the symptoms in acute cases better than just cytokines being responsible.
I think the long-hauler problem is the biggest issue with Covid and is so devastating to lives we just have to think about prevention as it seems very hard to imagine an easy cure.
I just wish someone would try to find one simple thing> are long haulers typically D deficient? Answering that question could possibly be the game changer suggested by all the studies revealing the high proportion of people hospitalised with Covid that have low D levels. A recent well-powerd Israeli study showed staggering figures – 95% of those admitted to ICU were D deficient.
1) Good, well-powered, peer-reviewed observational study: doi:10.1111/febs.15495
2) Large population study A. Israel et al https://doi.org/10.1101/2020.09.04.20188268
Then an unexpected result from a small but well-designed RCT in Spain using high dose Calceficidiol therapeutically in already hospitalised patients.
No-one died in the high D arm, none needed ICU care and all were discharged without complications. 2 died in the other and a proportion ended in ICU. Statistically significant results.
https://www.sciencedirect.com/science/article/pii/S0960076020302764?via%3Dihub
This MUST all mean something! The one easily. cheaply, and safely resolvable problem (regardless of all the other contributing factors)
Yet in the UK we are STILL all only encouraged to take 10mcg vit D daily for our muscles and bones! What are they afriad of? That with a few cheap, easy measures this disease might suddenly not be so very serious (the CFR is already converging with that of a bad flu year).
Sorry if these links have already been posted. The rest most of you here know but it bears repeating and repeating………. we must do all we can to stop this destructive folly (ie not rolling out the few things we know work, including zinc ionophores, also likely Ivermectin). We are abandoned in that crucial first week of symtoms when the game is won or lost.
I don`t think this virus is especially strange as coronaviruses go, but we its host truly are….
the 70,000 figure is the estimate of a single individual, derived using an undisclosed methodology, & confirmed by no one else. no other estimate is offered…
my question: under how many other circumstances would a number like this, arrived at by a single individual, regarding anything else (from crowd size to casualty numbers), be seen as being worthy of serious consideration/discussion without receiving additional affirmation?…
When I hear a number like 70,000 from one person, I take it as an estimate that hasn’t been proven but, when I think of all the people in New York City that got sick and then all the people that died, the 70,000 figure does not appear to be too outlandish. It’s something to consider as time goes on. (My son and his wife who left New York City in the middle of March to live in New Mexico just recently returned to NY. I hope and pray that they will remain safe.)
To semic
Because it’s just a hoax, right?
My Mom got Chronic Fatigue Syndrome about 30 years ago. Doctors always thought she was nuts (they literally told her to her face it was all in her head. (BTW “Syndrome” is a tell. It’s what Doctor’s call things they don’t understand, because it keeps them looking smart when they really don’t know WT(Family blog) is going on).
Through decades of Naturopathy she now has it under control and lives pretty normally.
Back in July when these reports started surfacing of the long term affects from COVID-19, her immediate response was “Oh, no they’ve gotten chronic fatigue syndrome.”
Being that Chronic Fatigue really is just a hyper immune system disorder and the most abusive affects of COVID 19 are on the immune system (see cytokene storms that kill), it definitely makes sense.
My mom will get the last laugh at all the HUBRISTIC, IGNORANT, COCKY, NON-SYSMPATHETIC, NON-EMPATHETIC DOCTORS that demeaned her as just being a nut case.
It’s horrifying that this broad virus has this capability, but it is a win for the Chronic Fatigue suffers around the world that may ultimately receive the respect and focus on treatment they have long deserved from the medical community.
I am 6 months in with post-Covid issues. Mainly intermittent shortness of breath and windedness upon exertion. Some fatigue occasionally and joint pain/body aches/stiffness. Not sure if the latter is from the post-viral issues or not being able to workout regularly. Was fit previously and Covid case was mild. Feels like I’m aging prematurely. Doctors are slowly coming around to issue. Still early as they have been focusing on acute cases vs. us long haulers.
I has an eye exam yesterday. The Ophthalmologist did discuss that the medical profession as a whole is aware there are long tern effects with Covid 19 patients.
As for the 70,000 long tern sufferers, it is an estimate which demands further study. I’d regard it as a lower bound of the actual number.