We CANNOT discuss long covid without discussing ME/CFS.
Katy talks about “graduates”—we are the graduates.
We have figured out insurance, separated snake oil from helpful supports, and learned the ropes.
Long Covid absolutely isn’t new…what’s new is the virus sweeping an unprotected population, and many people getting postviral illness at once so there’s media attention on it.
I'm a doctor and I have so many thoughts about how the medical system propagates these online and alternative health communities. First off, I want to say that most doctors are amazing, caring people that are incredibly overworked and doing the best they can, and doing what they were trained to do. But what we were trained to do is the problem. We were trained to put people's symptoms into a known diagnosis. And when things don't fit, there is no room for the unknown, the new, the unexplained. Science has become the ultimate answer, forgetting that science is also a search to explain the unknown. The system won't admit it doesn't have all of the answers. So the onus is then put on the patient when there are no answers-people (mainly women) are told all of the time that it is all in their head and it is due to stress instead of searching harder for a cause (highly recommend Doing Harm by Maya Dusenbery for more on this). Patients are left with no answers and no options, so they turn to the internet and to alternative medicine for what they need. And these range from immensely helpful to immensely harmful. I fully support people being able to do some of their own research, but also there are really dangerous and exploitive recommendations out there, and a lot of people that stand to profit of off the desperation to feel better.
All of this further contributes to the fact that health is a privilege, particularly in the US. That being able to find a doctor that will listen and believe you is a privilege. Agree with the IFM recommendation-it's not perfect, but it is a good starting point. Personally, I'm starting a practice that is on the natural/open to other options side and it is a strange place to be when I'm also still in practicing in such a broken system. I have hope that things are starting to move in the right direction, but also see how very far we have to go.
6 weeks post first positive test and I tell people I have "medium Covid". I'm not sure if it's long Covid yet. All kinds of crazy congestion and upper respiratory symptoms, and the fatigue fatigue fatigue... And the brain fog. Killer, intense, real. I'm a lawyer, a runner, a social butterfly, a travel addict with a full plate of work and community commitments. "Silver lining" is that I don't have kids so I just have to drag myself through the day. This is breaking my heart, and I'm teetering on the lip of serious depression. I'm scared to delve into online groups because I'm scared of what the future might look like. Literally no one around me understands because I didn't have severe Covid - I was never very sick, but I am also never really better. It seems like crazy middle-aged lady stuff when I try to explain. I will explore some of these resources - cautiously. Thank you for recognizing this all too real phenomenon,
This resonates deeply with me. Although I have been lucky enough to avoid COVID so far, I have been dealing with very similar types of problems for the last decade with Tardive Dyskinesia/Dystonia. The only people who do anything remotely resembling empirical research into how TD/D works are the people who have it. It is caused by neurotransmitter receptor-targeting medication, which is really all modern psych meds plus a few others. Dopaminergic drugs are the most risky. SSRI/SNRIs have been implicated as well. Dyskinesia and dystonia are characterized mainly by muscle spasms, but can screw up any neurological function: visual disturbances and eye pain are common; GI upset is more so.
Anyway, this is much too long a tale to get it all down here, but I have joined online groups for support and tried to do as much research as I can on my own given that I can analyze the crap out of an argument and have at least a passing acquaintance with statistics--and a critical grasp on the rhetorical underpinnings of statistics as infallible truth bearer. And my experience has been much the same: only those few of us lucky enough to live in urban centers and able, to some extent, "talk shop" with our doctors get anything like useful medical advice. Others are dismissed out of hand by their psychiatrists and PCPs, if they have them. Most have been given completely fictional rationales for why they are on the medications to begin with--which is endemic to psychopharmacology--and so are often in the middle of becoming brutally disillusioned with mainstream medicine.
There is no real research being done even on what these medications actually do in our bodies, much less on how they cause disabling neurological damage. There is no profit in this kind of research; in the short term, it could cause loss of profits for the pharmaceutical industry. The vast majority of people dealing with TD/D have been diagnosed as mentally ill at some point, so both our complaints and our best interests are routinely dismissed as not worth serious attention anyway. Many of us are disabled by our symptoms, and there is very little chance that any of us will be compensated at all for what is essentially iatrogenic injury.
The online groups have become a real mess since COVID. We are, as a group, justifiably suspicious of pharmaceutical claims about anything, so it is not surprising to me that anti-vax rhetoric and all kinds of COVID misinformation thrive in them. Only a few people have a grasp on science; fewer a good idea of how the scientific method collides unhappily with capitalism, or how pharmaceutical research in particular comes out of this collision practicing very very very shoddy science. Many simply dismiss any scientific claims as fake news without knowing any more than that they were lied to by people who claim to be scientists.
And so I don't have a whole lot to say anymore, because there are too many murky claims to untangle and debunk. But I reach the end of my rope with the pain and chronic-fatigue-levels of fatigue on a daily basis.
Honsetly, it does not surprise me to see long COVID being similarly ignored by the medical industry; as long as enough people are able to work, everything is fine, right? Myself, I am particularly worried that we with TD/D may all be at greater risk for long COVID, given that it does attack the nervous system. My body responds in very idiosyncratic ways to the vaccine. I really, really do not want to get sick, and I am really, really fed up with laissez-faire pandemic policies.
If there is anything positive in this, it may be that disability activism is going to become more urgent as our ranks swell. How to tap into this potential for change is not clear to me, and of course, being disabled means that most of us do not have a lot of energy for the work that needs to be done. And there will be much more to do in the very near future.
I am a 35 year old white middle class cisgender female with pre-existing Ehlers-Danlos Symdrome, Postural Orthostatic Tachycardia Syndrome (POTS), and IBS. I first tested positive for covid on April 16, 2022 and now have long covid and it really, really sucks. For the first two years of the pandemic I had anxiety and had to talk myself down, telling myself it won't be bad because I'm young and make healthy choices...oh what a fool I was!
Since I had covid three and a half months ago, I've also had a sinus infection and two viral infections. Each new infection feels like a reset, like I am back to April 16th, but each time I test negative for covid. This last viral infection felt the worst (first day July 8) post-original covid, and now my resting heart rate is stuck at 100 and I'm dealing with awful post-exertional malaise (PEM) and my POTS being out of control. Today was the first day in 2.5 weeks that I haven't had upper respiratory infection symptoms.
I had to take off work the week of July 11th and my 72 year old co-worker graciously donated his sick leave for me to use because I used all of my leave on covid plus the first two infections. I'm glad my work has a donated leave policy, but I feel embarrassed that someone twice my age had to give me sick leave.
The hardest thing about the PEM is that I have to guess and err on the conservative side to avoid completely killing my body. I sadly overdid it Saturday - I took my 3 year old daughter to the county fair and rode rides with her and as a result slept almost all of yesterday and still feel fatigued and out of it today. It's so hard because like, I wanted to believe that because I'm back on POTS medication and eating tons of sodium that I'd be fine riding a few rides. At the time I was fine but now definitely am not.
The hardest thing for me is that I want to be able to fully be there for my daughter and now I can't. My husband's parenting is mediocre and it's frustrating that he isn't rising to the occasion (Like, he doesn't remember to feed her and take her potty - we aren't talking rocket science here!) but some days I am too tired to parent, which is awful.
I'm enrolled in the NIH Recover long covid study in Washington DC, which is great except that I live 90 minutes away so on my worst days I had to reschedule my appointments (because even riding in a car causes PEM) - therefore, I'm basically explaining my symptoms to them while the tests are showing normal. They were really impressed with how much I knew about POTS, and I really hope they took down all of my notes with how POTS has affected me for the past several years and how I've been treating it.
I got COVID in December 2021, Omnicron variant. I had been 2x vaxxed in the Spring, so apparently my infection was breakthrough/my immunity was gone. I have never recovered. Extreme fatigue, joint pain, and brain fog are my main issues.
Finally scheduled a doctor’s appt this month, but I have little hope in that avenue. I really loathe going to the doctor--my medi-cal group is an effing nightmare to navigate, frankly. My best progress has been through my own research and trial + error. I have made progress through quitting coffee, high quality fish oil + Vitamin C, mushroom complexes, and keeping my diet as clean as possible. I don’t strive for a ‘cure’--I work towards longer stretches of ‘well’ days.
What shocks me is that rental relief, SNAP, stimulus, etc., were all so much easier to get at the height of the pandemic. Now there is nothing. Long COVID is a disabling epidemic that needs huge financial weight thrown behind it. We need stimulus, we need disability, we need rental relief. It’s like living with both your legs broken, but no one is coming to save you. And there are so, so many of us...
From the interview: "Right now, there are so many people with long COVID. According to the CDC, one in thirteen people have had acute COVID. And one and five out of those have lingering symptoms. Other studies show an even broader range, and the differences can be chalked up to the challenges in defining what long COVID really is. Whatever number you choose — it’s a lot of people, and the impact on society in terms of disability is going to be huge."
This is something I think about so much: It seems like every study defines long covid differently in ways that make it really difficult to come to a lot of conclusions about the condition as a whole. It seems to me, from my admittedly not super in-depth reading of the studies, like there are a number of different phenomena being lumped together under the umbrella of long covid, and I want to see them disaggregated a little. In these online communities, do people sort of group according to the specific way their long covid appeared and the type of challenges they have, or does everyone feel like they are experiencing the same thing and in the same boat?
I don't have long COVID (and, thankfully, so far have not yet gotten COVID itself) but as I read about what others are going through, I find numerous striking similarities to symptoms - particularly the exhaustion and onset of never-before allergies - I had in the last 80s to early 90s, after having recovered from an influenza that was pretty severe. (And had my whole family done for the count for about a week.)
It got me wondering what is the state of after-the-fact historical disease research, i.e. seeking out those who suffered through previous epidemics, or certain infectious diseases to see what happened in the decades and life that followed. I may be articulating this badly, because I do know there are those who do this sort of research, especially in medical anthropology and via history of diseases, and of course actual clinical followup, but I'm thinking of something else. More like... taking a new look at old data? Finding new information by returning to reexamine recent or within lifetime public health data and doing interviews, ethnography? Does this make sense as a question?
I've had long covid since August 2020. It's now been two years since my first covid symptoms appeared and I had my first covid test. I had covid again in December 2020, and recently in June 2022. Working in-person in Mississippi as a math tutor during a pandemic was rough. I'm now in Massachusetts and quitting my job after 6 months because it was too much with long covid, especially with a pregnancy then miscarriage, and a third round of covid, added on top. The last 6 months have been very challenging.
I have popped in and out of a long covid support group on Facebook. My experience echoes what Katy Pearce experienced. During the first year, we were all trying to figure it out, and there was a large emphasis put on research, advocacy, and finding evidence-based practices. After the Delta and Omicron waves, I find myself rarely going into the group. It's gotten too big to feel like a community, and it can be triggering at times to go in there. The groups did help point me in directions of which specialists to go to. I've now been to 3 different cardiologists, a pulmonologist, an allergist, and a neurologist. I'm still waiting on the autonomic specialist to call me back about scheduling.
This has been a huge learning experience for me as far as chronic illness goes. I've realized that this is not a new thing, it's an old thing that covid turned up to 11. As I've learned about POTS and MCAS, I've realized that these are things that were a part of my life before I ever had covid. Now that I've been to physical therapy for 4 different unstable joints (chronic fatigue really messes with necessary fitness routines, I've always said I need to be very strong in order to hold my body together) in the past year, so now I'm also trying to figure that out.
We CANNOT discuss long covid without discussing ME/CFS.
Katy talks about “graduates”—we are the graduates.
We have figured out insurance, separated snake oil from helpful supports, and learned the ropes.
Long Covid absolutely isn’t new…what’s new is the virus sweeping an unprotected population, and many people getting postviral illness at once so there’s media attention on it.
We MUST bring Me/CFS into the conversation.
I'm a doctor and I have so many thoughts about how the medical system propagates these online and alternative health communities. First off, I want to say that most doctors are amazing, caring people that are incredibly overworked and doing the best they can, and doing what they were trained to do. But what we were trained to do is the problem. We were trained to put people's symptoms into a known diagnosis. And when things don't fit, there is no room for the unknown, the new, the unexplained. Science has become the ultimate answer, forgetting that science is also a search to explain the unknown. The system won't admit it doesn't have all of the answers. So the onus is then put on the patient when there are no answers-people (mainly women) are told all of the time that it is all in their head and it is due to stress instead of searching harder for a cause (highly recommend Doing Harm by Maya Dusenbery for more on this). Patients are left with no answers and no options, so they turn to the internet and to alternative medicine for what they need. And these range from immensely helpful to immensely harmful. I fully support people being able to do some of their own research, but also there are really dangerous and exploitive recommendations out there, and a lot of people that stand to profit of off the desperation to feel better.
All of this further contributes to the fact that health is a privilege, particularly in the US. That being able to find a doctor that will listen and believe you is a privilege. Agree with the IFM recommendation-it's not perfect, but it is a good starting point. Personally, I'm starting a practice that is on the natural/open to other options side and it is a strange place to be when I'm also still in practicing in such a broken system. I have hope that things are starting to move in the right direction, but also see how very far we have to go.
6 weeks post first positive test and I tell people I have "medium Covid". I'm not sure if it's long Covid yet. All kinds of crazy congestion and upper respiratory symptoms, and the fatigue fatigue fatigue... And the brain fog. Killer, intense, real. I'm a lawyer, a runner, a social butterfly, a travel addict with a full plate of work and community commitments. "Silver lining" is that I don't have kids so I just have to drag myself through the day. This is breaking my heart, and I'm teetering on the lip of serious depression. I'm scared to delve into online groups because I'm scared of what the future might look like. Literally no one around me understands because I didn't have severe Covid - I was never very sick, but I am also never really better. It seems like crazy middle-aged lady stuff when I try to explain. I will explore some of these resources - cautiously. Thank you for recognizing this all too real phenomenon,
This resonates deeply with me. Although I have been lucky enough to avoid COVID so far, I have been dealing with very similar types of problems for the last decade with Tardive Dyskinesia/Dystonia. The only people who do anything remotely resembling empirical research into how TD/D works are the people who have it. It is caused by neurotransmitter receptor-targeting medication, which is really all modern psych meds plus a few others. Dopaminergic drugs are the most risky. SSRI/SNRIs have been implicated as well. Dyskinesia and dystonia are characterized mainly by muscle spasms, but can screw up any neurological function: visual disturbances and eye pain are common; GI upset is more so.
Anyway, this is much too long a tale to get it all down here, but I have joined online groups for support and tried to do as much research as I can on my own given that I can analyze the crap out of an argument and have at least a passing acquaintance with statistics--and a critical grasp on the rhetorical underpinnings of statistics as infallible truth bearer. And my experience has been much the same: only those few of us lucky enough to live in urban centers and able, to some extent, "talk shop" with our doctors get anything like useful medical advice. Others are dismissed out of hand by their psychiatrists and PCPs, if they have them. Most have been given completely fictional rationales for why they are on the medications to begin with--which is endemic to psychopharmacology--and so are often in the middle of becoming brutally disillusioned with mainstream medicine.
There is no real research being done even on what these medications actually do in our bodies, much less on how they cause disabling neurological damage. There is no profit in this kind of research; in the short term, it could cause loss of profits for the pharmaceutical industry. The vast majority of people dealing with TD/D have been diagnosed as mentally ill at some point, so both our complaints and our best interests are routinely dismissed as not worth serious attention anyway. Many of us are disabled by our symptoms, and there is very little chance that any of us will be compensated at all for what is essentially iatrogenic injury.
The online groups have become a real mess since COVID. We are, as a group, justifiably suspicious of pharmaceutical claims about anything, so it is not surprising to me that anti-vax rhetoric and all kinds of COVID misinformation thrive in them. Only a few people have a grasp on science; fewer a good idea of how the scientific method collides unhappily with capitalism, or how pharmaceutical research in particular comes out of this collision practicing very very very shoddy science. Many simply dismiss any scientific claims as fake news without knowing any more than that they were lied to by people who claim to be scientists.
And so I don't have a whole lot to say anymore, because there are too many murky claims to untangle and debunk. But I reach the end of my rope with the pain and chronic-fatigue-levels of fatigue on a daily basis.
Honsetly, it does not surprise me to see long COVID being similarly ignored by the medical industry; as long as enough people are able to work, everything is fine, right? Myself, I am particularly worried that we with TD/D may all be at greater risk for long COVID, given that it does attack the nervous system. My body responds in very idiosyncratic ways to the vaccine. I really, really do not want to get sick, and I am really, really fed up with laissez-faire pandemic policies.
If there is anything positive in this, it may be that disability activism is going to become more urgent as our ranks swell. How to tap into this potential for change is not clear to me, and of course, being disabled means that most of us do not have a lot of energy for the work that needs to be done. And there will be much more to do in the very near future.
/end vent
I am a 35 year old white middle class cisgender female with pre-existing Ehlers-Danlos Symdrome, Postural Orthostatic Tachycardia Syndrome (POTS), and IBS. I first tested positive for covid on April 16, 2022 and now have long covid and it really, really sucks. For the first two years of the pandemic I had anxiety and had to talk myself down, telling myself it won't be bad because I'm young and make healthy choices...oh what a fool I was!
Since I had covid three and a half months ago, I've also had a sinus infection and two viral infections. Each new infection feels like a reset, like I am back to April 16th, but each time I test negative for covid. This last viral infection felt the worst (first day July 8) post-original covid, and now my resting heart rate is stuck at 100 and I'm dealing with awful post-exertional malaise (PEM) and my POTS being out of control. Today was the first day in 2.5 weeks that I haven't had upper respiratory infection symptoms.
I had to take off work the week of July 11th and my 72 year old co-worker graciously donated his sick leave for me to use because I used all of my leave on covid plus the first two infections. I'm glad my work has a donated leave policy, but I feel embarrassed that someone twice my age had to give me sick leave.
The hardest thing about the PEM is that I have to guess and err on the conservative side to avoid completely killing my body. I sadly overdid it Saturday - I took my 3 year old daughter to the county fair and rode rides with her and as a result slept almost all of yesterday and still feel fatigued and out of it today. It's so hard because like, I wanted to believe that because I'm back on POTS medication and eating tons of sodium that I'd be fine riding a few rides. At the time I was fine but now definitely am not.
The hardest thing for me is that I want to be able to fully be there for my daughter and now I can't. My husband's parenting is mediocre and it's frustrating that he isn't rising to the occasion (Like, he doesn't remember to feed her and take her potty - we aren't talking rocket science here!) but some days I am too tired to parent, which is awful.
I'm enrolled in the NIH Recover long covid study in Washington DC, which is great except that I live 90 minutes away so on my worst days I had to reschedule my appointments (because even riding in a car causes PEM) - therefore, I'm basically explaining my symptoms to them while the tests are showing normal. They were really impressed with how much I knew about POTS, and I really hope they took down all of my notes with how POTS has affected me for the past several years and how I've been treating it.
I got COVID in December 2021, Omnicron variant. I had been 2x vaxxed in the Spring, so apparently my infection was breakthrough/my immunity was gone. I have never recovered. Extreme fatigue, joint pain, and brain fog are my main issues.
Finally scheduled a doctor’s appt this month, but I have little hope in that avenue. I really loathe going to the doctor--my medi-cal group is an effing nightmare to navigate, frankly. My best progress has been through my own research and trial + error. I have made progress through quitting coffee, high quality fish oil + Vitamin C, mushroom complexes, and keeping my diet as clean as possible. I don’t strive for a ‘cure’--I work towards longer stretches of ‘well’ days.
What shocks me is that rental relief, SNAP, stimulus, etc., were all so much easier to get at the height of the pandemic. Now there is nothing. Long COVID is a disabling epidemic that needs huge financial weight thrown behind it. We need stimulus, we need disability, we need rental relief. It’s like living with both your legs broken, but no one is coming to save you. And there are so, so many of us...
From the interview: "Right now, there are so many people with long COVID. According to the CDC, one in thirteen people have had acute COVID. And one and five out of those have lingering symptoms. Other studies show an even broader range, and the differences can be chalked up to the challenges in defining what long COVID really is. Whatever number you choose — it’s a lot of people, and the impact on society in terms of disability is going to be huge."
This is something I think about so much: It seems like every study defines long covid differently in ways that make it really difficult to come to a lot of conclusions about the condition as a whole. It seems to me, from my admittedly not super in-depth reading of the studies, like there are a number of different phenomena being lumped together under the umbrella of long covid, and I want to see them disaggregated a little. In these online communities, do people sort of group according to the specific way their long covid appeared and the type of challenges they have, or does everyone feel like they are experiencing the same thing and in the same boat?
I don't have long COVID (and, thankfully, so far have not yet gotten COVID itself) but as I read about what others are going through, I find numerous striking similarities to symptoms - particularly the exhaustion and onset of never-before allergies - I had in the last 80s to early 90s, after having recovered from an influenza that was pretty severe. (And had my whole family done for the count for about a week.)
It got me wondering what is the state of after-the-fact historical disease research, i.e. seeking out those who suffered through previous epidemics, or certain infectious diseases to see what happened in the decades and life that followed. I may be articulating this badly, because I do know there are those who do this sort of research, especially in medical anthropology and via history of diseases, and of course actual clinical followup, but I'm thinking of something else. More like... taking a new look at old data? Finding new information by returning to reexamine recent or within lifetime public health data and doing interviews, ethnography? Does this make sense as a question?
I've had long covid since August 2020. It's now been two years since my first covid symptoms appeared and I had my first covid test. I had covid again in December 2020, and recently in June 2022. Working in-person in Mississippi as a math tutor during a pandemic was rough. I'm now in Massachusetts and quitting my job after 6 months because it was too much with long covid, especially with a pregnancy then miscarriage, and a third round of covid, added on top. The last 6 months have been very challenging.
I have popped in and out of a long covid support group on Facebook. My experience echoes what Katy Pearce experienced. During the first year, we were all trying to figure it out, and there was a large emphasis put on research, advocacy, and finding evidence-based practices. After the Delta and Omicron waves, I find myself rarely going into the group. It's gotten too big to feel like a community, and it can be triggering at times to go in there. The groups did help point me in directions of which specialists to go to. I've now been to 3 different cardiologists, a pulmonologist, an allergist, and a neurologist. I'm still waiting on the autonomic specialist to call me back about scheduling.
This has been a huge learning experience for me as far as chronic illness goes. I've realized that this is not a new thing, it's an old thing that covid turned up to 11. As I've learned about POTS and MCAS, I've realized that these are things that were a part of my life before I ever had covid. Now that I've been to physical therapy for 4 different unstable joints (chronic fatigue really messes with necessary fitness routines, I've always said I need to be very strong in order to hold my body together) in the past year, so now I'm also trying to figure that out.