This is one of the clearest, most honest pieces I’ve read about what Long COVID actually exposed. The line that hit hardest: “we cannot yet explain this” quietly becoming “this may not be real.” That’s not a gap in science. That’s a failure of intellectual honesty, and it has consequences that land directly on patients.
I have Long COVID and ME/CFS, diagnosed in September 2022. I’m relatively new to this community, and one of the first things I learned when I arrived was how much work had already been done by the people who were here long before me.
The section on the patients who already knew landed hard, because as I wrote in my own essay on this: “The people who live with ME/CFS did not greet Long Covid with surprise. They greeted it with recognition.”
They had been carrying this for decades. The dismissal, the normal labs, the credibility becoming the variable instead of medicine’s limits. Long COVID didn’t create that pattern. It just finally made it visible enough that the rest of the world couldn’t look away.
The funding disparity data is damning and important. Less than 1% of proportionate NIH funding for ME/CFS. Female-predominant conditions receiving a fraction of what male-predominant conditions get per year of disability. That’s not a pipeline problem. That’s a values problem.
Thank you for writing this with rigor and without softening the edges.
Long covid has destroyed every inch of my life. Truly a living death. My days spent in a dark, quiet bedroom for the last six years. People can’t begin to comprehend the suffering. Thank you for covering this.
You are absolutely not crazy and you are not alone. Please know, from the inside, there are so so many people fighting to turn the tide on conditions like this. Know that they are there, and not going anywhere, until this is done. Stay strong. I’m rooting for you 🩷
This is an excellent article, although due to cognitive dysfunction I have not managed to read all of it yet!
I’ve had ME/CFS since 2009, although I actually suspect it has been present since childhood. So when COVID arrived, I was acutely aware that it would most likely have an effect on my body and immune system.
My ME became severe in 2017, although at the milder end of severe, and I continued to deteriorate. I became aware of my first COVID infection on 13th March 2020, before any restrictions had been put in place here in the UK.
I was completely knocked out — sleeping 18 hours a day for 10 days straight. Then I woke up and felt great. So great, in fact, that I stupidly did some housework and consequently did not properly get out of bed again until May.
It was infections two and three, three months apart, that really flattened me. I still don’t think I’ve recovered from infection three, let alone four and five.
I’ve been predominantly bedbound since January 2023. I say predominantly because I am usually able to get to the bathroom independently, and I try to get downstairs to the kitchen and back two or three times a week — usually out of necessity.
Our healthcare system is seriously flawed.
The NHS copes well with cancer and heart disease. In fact, anything that can be fixed by today’s procedures and medicines is deemed legitimate. The problem can be diagnosed and, in many cases, resolved.
Yet for those of us living with complex chronic illnesses that lack reliable testing, clear diagnoses, and certainly treatment options — the future does not look bright.
When I privately saw a rheumatologist after suffering with severe fatigue and an inability to recover from exercise or viruses, he would only diagnose me with fibromyalgia. When I questioned why not ME/CFS too, he responded by saying, “I don’t give out two diagnoses.” As a result, I was not permitted to attend the CFS unit.
Like most of my fellow ME warriors, we learn from books and from each other. Even if we can afford to see one of the handful of doctors who privately treat people with ME, we still have little access to treatments beyond pacing regimes.
Now we are faced with a new pandemic of chronically ill patients, where the number of people diagnosed with ME/CFS has reportedly risen from 250,000 to 1.3 million, according to the charity Action for ME. I suspect the true figure is far higher, as many people diagnosed with Long Covid clearly fit the criteria for ME/CFS. Others have been left with heart and lung damage, and the very unfortunate have all of it combined.
Yet rather than acknowledging that the steep rise in benefit claimants is a direct consequence of COVID, our government has instead chosen to scrutinise the benefits system by making it increasingly difficult for people to claim the financial support they desperately need due to an inability to work.
Instead, our nation has decided that COVID has disappeared and is no longer a problem, whilst the virus continues to circulate, infecting people and causing lifelong chronic illness.
But as your article so clearly identifies, rather than investing in tests to prove patients’ symptoms, the healthcare system would often prefer to deny the existence of our chronic ill health.
Thank you for taking the time to share your story. I'm so sorry for how you have been treated by physicians and the system, ON TOP OF dealing with the limitations of chronic illness.
Excellent job of framing the emerging crisis! I have battled ME/CFS since I came down with a virus at the age of 23 and never recovered. That was in 1991. I am disabled, housebound and mostly confined to bed. Advocates like myself have sounded the alarm for decades. Thanks for raising awareness!
Thank YOU for your continued fight to raise awareness. It has worked! I am seeing this getting more and more attention in the medical community. I'm glad to fan the flames how I can!
As a family with four cases of long covid (3 have been or are long-term severe cases), we know this too well. And we have so little support. It has been and continues to be a battle we fight in our own.
I’m so sorry to hear you and your family are going through that. Stay strong okay <3 Please know that there are so many people fighting inside the system for change now as well. You are not alone!
Thank you for your concern. Unfortunately on a day to day basis, we are on our own: an 11 year old who has never been able to attend school, ill since 2020. The school has no mechanism to help; 24 year old who dropped out of university and has been bed-ridden for 2.5 years. Mom and dad doing all the heavy lifting. We are not the only ones. But the burden is high.
This article articulates what we struggle with so well. And that’s why I write about my Long COVID experience as many of us do, to document. Learning from each other through platforms like this have helped me more than 95% of the doctors I have seen (and I was lucky enough to attend the Mayo Clinic’s Post Covid Care Clinic). We must keep writing, and documenting, joining clinical trials when we can, until we get the answers and help we deserve.
Last October I had an SSDI judge tell me that I was faking and should go back to line cooking even though it takes everything I have just to cook supper for myself and my partner. I can’t even manage to clean up the kitchen until the next morning.
Reading the comments is heart breaking. So much suffering that could have been avoided if myalgic encephalomyelitis had received proper recognition. I caught myalgic encephalomyelitis in 1989. I have lived through the history of burying ME under vague criteria. Watching this repeated is frustrating.
You may not be aware that experts tried to clarify what ME is (and isn't) in 2011 with the International Consensus Criteria. In 2012 they wrote a medical primer that explained the importance of extricating a distinct groups of patients from those who didn't have the same thing. Most importantly informing Dr's how to test in order to screen so there would be fewer missed diagnosis.
Watching the mechanizations of government agencies to bury that knowledge has been eye opening.
See links to the primer in multiple languages here: (please see pages ii & iv)
Modern health systems only work for conditions that are understood, classified and then tackled with treatments. Medics want to work in these areas because there is every chance of success. They don’t want to devote their careers to poorly understood conditions. These offer poor returns. And so people with ME, Long Covid, and many mental illnesses languish in a forgotten backwater of the pathological landscape. This is clearly a horrible injustice.
Thanks for this excellent article! As you empathically note, many people experienced this medical gaslighting long before COVID. I think another reason for the lack of research funding is it would require so many people in power (on both sides of the aisle) to admit that they minimized the impact of this devastating virus (and continue to do so).
Thanks for writing this. I'm a similar story to many of these other commenters: bedbound for years, I spent 18 months in the dark, staring at the ceiling for months.
Slight correction: you write that incidence is approaching 400 million worldwide, but your linked paper which calculates this figure says its a very conservative estimate because it only takes into account first symptomatic infections. The true figure is surely much higher. This paper (https://academic.oup.com/ofid/article/12/9/ofaf533/8244677) has prevalence at 36%, implying >2 billion.
This is one of the clearest, most honest pieces I’ve read about what Long COVID actually exposed. The line that hit hardest: “we cannot yet explain this” quietly becoming “this may not be real.” That’s not a gap in science. That’s a failure of intellectual honesty, and it has consequences that land directly on patients.
I have Long COVID and ME/CFS, diagnosed in September 2022. I’m relatively new to this community, and one of the first things I learned when I arrived was how much work had already been done by the people who were here long before me.
The section on the patients who already knew landed hard, because as I wrote in my own essay on this: “The people who live with ME/CFS did not greet Long Covid with surprise. They greeted it with recognition.”
They had been carrying this for decades. The dismissal, the normal labs, the credibility becoming the variable instead of medicine’s limits. Long COVID didn’t create that pattern. It just finally made it visible enough that the rest of the world couldn’t look away.
The funding disparity data is damning and important. Less than 1% of proportionate NIH funding for ME/CFS. Female-predominant conditions receiving a fraction of what male-predominant conditions get per year of disability. That’s not a pipeline problem. That’s a values problem.
Thank you for writing this with rigor and without softening the edges.
Thank you for sharing your story with me and for your incredibly kind words. I appreciate that!
I just read your piece, "The Inventory of Loss"---it gutted me. That was one of the best pieces I've read on this site.
Thank you for sharing your light and wisdom with the rest of us, so that we can both learn about ourselves and feel seen.
(Here's the link, I highly suggest others check this out)
https://darthfoo.substack.com/p/the-inventory-of-loss?r=1ncsq2&utm_campaign=post&utm_medium=web
Long covid has destroyed every inch of my life. Truly a living death. My days spent in a dark, quiet bedroom for the last six years. People can’t begin to comprehend the suffering. Thank you for covering this.
I am so sorry for what you are going through. You are incredibly strong and please know I see you, you matter and I am rooting for you!
I feel seen. Thank you for writing this. I know that I’m not crazy, and I’m not alone.
You are absolutely not crazy and you are not alone. Please know, from the inside, there are so so many people fighting to turn the tide on conditions like this. Know that they are there, and not going anywhere, until this is done. Stay strong. I’m rooting for you 🩷
Thank you for writing this, it's so succinct, and so necessary
Thanks for reading :)
Excellent article Thanks.
Thank you and thanks for reading :)
This is an excellent article, although due to cognitive dysfunction I have not managed to read all of it yet!
I’ve had ME/CFS since 2009, although I actually suspect it has been present since childhood. So when COVID arrived, I was acutely aware that it would most likely have an effect on my body and immune system.
My ME became severe in 2017, although at the milder end of severe, and I continued to deteriorate. I became aware of my first COVID infection on 13th March 2020, before any restrictions had been put in place here in the UK.
I was completely knocked out — sleeping 18 hours a day for 10 days straight. Then I woke up and felt great. So great, in fact, that I stupidly did some housework and consequently did not properly get out of bed again until May.
It was infections two and three, three months apart, that really flattened me. I still don’t think I’ve recovered from infection three, let alone four and five.
I’ve been predominantly bedbound since January 2023. I say predominantly because I am usually able to get to the bathroom independently, and I try to get downstairs to the kitchen and back two or three times a week — usually out of necessity.
Our healthcare system is seriously flawed.
The NHS copes well with cancer and heart disease. In fact, anything that can be fixed by today’s procedures and medicines is deemed legitimate. The problem can be diagnosed and, in many cases, resolved.
Yet for those of us living with complex chronic illnesses that lack reliable testing, clear diagnoses, and certainly treatment options — the future does not look bright.
When I privately saw a rheumatologist after suffering with severe fatigue and an inability to recover from exercise or viruses, he would only diagnose me with fibromyalgia. When I questioned why not ME/CFS too, he responded by saying, “I don’t give out two diagnoses.” As a result, I was not permitted to attend the CFS unit.
Like most of my fellow ME warriors, we learn from books and from each other. Even if we can afford to see one of the handful of doctors who privately treat people with ME, we still have little access to treatments beyond pacing regimes.
Now we are faced with a new pandemic of chronically ill patients, where the number of people diagnosed with ME/CFS has reportedly risen from 250,000 to 1.3 million, according to the charity Action for ME. I suspect the true figure is far higher, as many people diagnosed with Long Covid clearly fit the criteria for ME/CFS. Others have been left with heart and lung damage, and the very unfortunate have all of it combined.
Yet rather than acknowledging that the steep rise in benefit claimants is a direct consequence of COVID, our government has instead chosen to scrutinise the benefits system by making it increasingly difficult for people to claim the financial support they desperately need due to an inability to work.
Instead, our nation has decided that COVID has disappeared and is no longer a problem, whilst the virus continues to circulate, infecting people and causing lifelong chronic illness.
But as your article so clearly identifies, rather than investing in tests to prove patients’ symptoms, the healthcare system would often prefer to deny the existence of our chronic ill health.
“I don’t give out two diagnoses.”
That chilled me to my bones.
Thank you for taking the time to share your story. I'm so sorry for how you have been treated by physicians and the system, ON TOP OF dealing with the limitations of chronic illness.
I truly hope things get better. Hang in there!
Excellent job of framing the emerging crisis! I have battled ME/CFS since I came down with a virus at the age of 23 and never recovered. That was in 1991. I am disabled, housebound and mostly confined to bed. Advocates like myself have sounded the alarm for decades. Thanks for raising awareness!
Thank YOU for your continued fight to raise awareness. It has worked! I am seeing this getting more and more attention in the medical community. I'm glad to fan the flames how I can!
As a family with four cases of long covid (3 have been or are long-term severe cases), we know this too well. And we have so little support. It has been and continues to be a battle we fight in our own.
I’m so sorry to hear you and your family are going through that. Stay strong okay <3 Please know that there are so many people fighting inside the system for change now as well. You are not alone!
Thank you for your concern. Unfortunately on a day to day basis, we are on our own: an 11 year old who has never been able to attend school, ill since 2020. The school has no mechanism to help; 24 year old who dropped out of university and has been bed-ridden for 2.5 years. Mom and dad doing all the heavy lifting. We are not the only ones. But the burden is high.
This article articulates what we struggle with so well. And that’s why I write about my Long COVID experience as many of us do, to document. Learning from each other through platforms like this have helped me more than 95% of the doctors I have seen (and I was lucky enough to attend the Mayo Clinic’s Post Covid Care Clinic). We must keep writing, and documenting, joining clinical trials when we can, until we get the answers and help we deserve.
Last October I had an SSDI judge tell me that I was faking and should go back to line cooking even though it takes everything I have just to cook supper for myself and my partner. I can’t even manage to clean up the kitchen until the next morning.
Reading the comments is heart breaking. So much suffering that could have been avoided if myalgic encephalomyelitis had received proper recognition. I caught myalgic encephalomyelitis in 1989. I have lived through the history of burying ME under vague criteria. Watching this repeated is frustrating.
You may not be aware that experts tried to clarify what ME is (and isn't) in 2011 with the International Consensus Criteria. In 2012 they wrote a medical primer that explained the importance of extricating a distinct groups of patients from those who didn't have the same thing. Most importantly informing Dr's how to test in order to screen so there would be fewer missed diagnosis.
Watching the mechanizations of government agencies to bury that knowledge has been eye opening.
See links to the primer in multiple languages here: (please see pages ii & iv)
https://drive.google.com/file/d/1OLvCfM3HAZ4Yn_UELRWLXV8c3BTmwgnR/view?usp=drivesdk
Typo? Seems to be a lingering quotation mark after "No validated biomarker exists"
Modern health systems only work for conditions that are understood, classified and then tackled with treatments. Medics want to work in these areas because there is every chance of success. They don’t want to devote their careers to poorly understood conditions. These offer poor returns. And so people with ME, Long Covid, and many mental illnesses languish in a forgotten backwater of the pathological landscape. This is clearly a horrible injustice.
Thanks for this excellent article! As you empathically note, many people experienced this medical gaslighting long before COVID. I think another reason for the lack of research funding is it would require so many people in power (on both sides of the aisle) to admit that they minimized the impact of this devastating virus (and continue to do so).
Thanks for writing this. I'm a similar story to many of these other commenters: bedbound for years, I spent 18 months in the dark, staring at the ceiling for months.
Slight correction: you write that incidence is approaching 400 million worldwide, but your linked paper which calculates this figure says its a very conservative estimate because it only takes into account first symptomatic infections. The true figure is surely much higher. This paper (https://academic.oup.com/ofid/article/12/9/ofaf533/8244677) has prevalence at 36%, implying >2 billion.