Hi everyone, A really, really important piece of research dropped this week highlighting muscle abnormalities (the first piece highlighted in the ‘research’ section) in Long Covid after excercising. The authors also highlighted and outlined their paper in a
I have not had a second infection, but my long hauler friends who have report everything from “meh - nothing really got worse from there existing LC baseline” to “holy shit, what is this fresh new hell?” Some of the latter had managed to get quite a bit better from their initial infection/LC and so the setback (with worsening symptoms or even a new set of symptoms) was particularly devastating. I also have a long hauler friend who has been infected five times and while she still has several LC symptoms, she’s been able to work p/t and function basically okay. It runs the gamut.
I have had the pneumovax. It was part of my infectious disease doctor’s plan for getting my health insurance to approve IVIG. She basically tested my pneumococcal antibodies, waited a month, gave me the pneumovax, waited another month, tested them again. I did not produce sufficient antibodies to the pneumovax so I was diagnosed with CVID (common variable immune deficiency) and insurance approved me for IVIG (which I did twice and had to stop due to side effects). In any event, I had no side effects or symptoms from the pneumovax, and I believe that’s what you wanted to know. And I do have MCAS as well, so it was not a sure thing that I wouldn’t have side effects.
Thank you for the detailed response here. That is crazy your friend has had covid 5 times. Even crazier is that I think that is becoming quite common. I appreciate the pneumovax comment, I had some worries but will likely get it now.
This couldn't be more confusing... Dr Putrino essentially says exercise is detrimental to PASC recovery, then suggests autonomic conditioning therapy, which, as far as I can tell, is exercise, just a bit less of it?
I had a second infection in September 2023 while visiting friends in another country (first infection was October 2021) and I was terrified that I would be back to square one in my Long Covid journey. I’m happy to say that did not happen. I took Paxlovid and rested intensely for 10 days after testing positive. I was then able to continue my journey around the UK visiting friends. I was careful about my pacing, rested hard when I got back home, and did a round of 10 HBOT sessions (after having done an original 40 HBOT sessions in summer 2023) to help get me back on track. I do not feel like my (very slow) recovery trajectory has been adversely affected by this second infection, which is such a relief.
I'm actually sick with the wretched going arounds (not sure what -- there are several possibilities but tested neg for covid), and I think it broke what I was thinking was a remission. I was initially infected in March 2020 and once I got my strength back in June 2020, I took a bike ride and had to drape myself over the handlebars and use the bike as a walker to get home. I've been quite ill since, and barely remember late 2020-2022. In 2023 my health improved and lately I have felt strong enough to plan some desperately needed home repairs, but now it feels like POTS is back.
Yes, just as I started to have minimal improvements from Long COVID after 3 years, I got reinfected last March despite limiting time indoors, always masking, and essentially "doing everything right". I got Paxlovid, and rested as much as possible for several weeks (I already work from home so I played it really safe and took it easy with housework and walks, etc.). Despite this, I got substantially worse, developed new neurological symptoms (flashing lights, migraines, intermittent inability to form words), POTS, intermittent earaches and inability to use earbuds, flare ups of hip and shoulder issues, and significantly worsened insomnia, fatigue, and PEM.
I stayed on the same supplements I had been on as well as the LDN I'd been taking for a year at that point. The benefits from LDN essentially disappeared for about 6-8 months. Around that time, I was started on Amantadine and Midodrine, and got a Novovax vaccine. It's hard to know if one/a combo of these have been helping or if the flare of new/worsened symptoms would have gotten better with enough time, but some symptoms have trailed off and became less present or constant. I said that after my first infection in 2020 that my functional baseline had dropped to 50%, and just started to move toward 60% in early 2023. The second infection set me back to about 40%. On a good day I'm at about 45% now in terms of my capacity, but I'm rarely able to tolerate walks more than a couple blocks and there are still days I have to nap after showering.
Unfortunately, I've heard of many cases of worsened or returning LC after reinfection, though it's definitely not everyone and seems like a crapshoot. I hope the other reader, Michael, has a more fortunate experience than mine - it does sound like there are people who fair much better that this with reinfection. FWIW, my case was one detailed in this piece from last November.
Thank you, the article is really helpful. I think I got back to about 60% but last week I got whatever is going around and it feels like POTS returned. I'm still sick so maybe it will pass, but it's alarming.
My initial infection that caused LC was near the end of March 2020. I had a confirmed reinfection in May 2022, and was prescribed Paxlovid for it.
I'd say my results were mixed but generally positive. I had never previously had GI issues as part of LC, and I developed them after the reinfection. But my fatigue levels and brain fog hugely improved about a month-ish after the second infection. Not sure if that was the Paxlovid or that the second infection hit a bit of a reset on my immune system again. I do still have brain fog/memory stuff and PEM, but it is much more manageable now than it was before my second infection, so overall I consider it a net gain even though the GI stuff has been a fun new wrinkle to manage.
Re: second infection, my story may be of interest. I currently suspect 3 infections, March 2020, June 2022, and November 2022.
The suspected March 2020 infection was super mild, which breathlessness and toe sores being the main symptoms. At the time we thought we may have it, and can trace the potential exposure, but there’s no way of knowing if we were actually infected so we can set that one aside for now.
May/June 2022 was a confirmed infection. Again, very mild with fatigue and breathlessness the only symptoms. Tested positive for two weeks from the end of May until early-mid June. By July I started experiencing significant neurological symptoms that felt extremely similar to post-concussion symptoms: severe depression, brain fog, sensitivity to light and sound, and occasional episodes of what I can only describe as what I imagine dementia to feel like. I made changes in my diet and behavior to reduce inflammation, and started to see some improvement to where I could go a week or two without much issue.
In November 2022 my partner tested positive, but I did not. However, I suspect that I had an infection that was not active enough for an antigen test to show. Either way, my existing symptoms all went through the roof, and new symptoms started: tachycardia, histamine intolerance, severe fatigue, orthostatic intolerance, PEM, dysautonomia, and a few others that I’m sure I’m forgetting. Fast forward to today, and my most debilitating symptoms are fatigue, dysautonomia, and PEM.
I’ve heard stories of people getting better with subsequent infections. As with all of this, though, it seems there are just too many variables to know why or how. Perhaps some types of LC respond to heightened immune responses, while others get worse. Certainly a lot to learn out there!
Thanks for the detailed response, Michael. Yes it seems like the results are extremely heterogenous depending on the person. We definitely need a study looking into this.
regarding a 2nd infection after already having been diagnosed with LC: I first got infected in July 23 while on rehab due to a stroke suffered in February. In mid September symptoms of LC like fatigue, PEM and feelings of suffocation appeared. While on rehab again in October and November because of the stroke, I got infected again, but the acute phase was only a few days. The other symptoms worsened a lot though and it is only now getting back to the level prior to the second infection.
Below is an interview and a link to research study referred to, about Covid re-infection. The articles primarily address whether a re-infection can bring on Long Covid or more severe acute Covid, but there is an inference about how, if you already have post-acute sequelae, you can get worse, or different symptoms with the next infection. I think we put this study in one of the previous newsletters.
Hi Brandon, many thanks for the weekly newsletter that keeps me up-to-date with the newest findings about this horrible disease. I am recovering from LC (into it for 17 months now) and I'd like to ask your opinion about the research done by the Bateman Horne Center that was worked into a series of informative videos about PEM for doctors: https://www.youtube.com/playlist?list=PL-OZ_5Cqdc309Gp1hO4PpUKQIsTlyUf04. I thought I got these via you, but it turns out I got them from Tom Harris's LC Newsletter (New Zealand). In my view (but I'm not a medic) these videos (I think from mid-2023) provide the same kind of data and empirical substantiation as the Dutch research about PEM that you highlight in your most recent newsletter as "really important" (https://www.nature.com/articles/s41467-023-44432-3) . I agree with that, but I actually don't think it is new. It has just not been in people's attention enough. I actually think the findings of the Bateman Horne Center are more informative (see particularly videos 3 and 4) than the ones recently published by Amsterdam . The BHC conducted multiple exertion tests and found that people suffering from PEM could not meet the results on their second day of exercise that they could meet on their first day. Moreover, the researchers involved participants with other serious illnesses (such as MS, but without PEM) and they found that the "altered cellular metabolism" was only found in those participants with PEM, not those with MS, which means that this distorted cellular metabolism is unique for PEM. However, I am not quite sure where the findings of the BHC were published. I did forward the videos to my GP, though, and I think it was very informative for all the doctors there. It makes me think about the workings of science (I'm a scholar myself), and the ways in which knowledge spreads or not, and is picked up or not, even by peers in the discipline. Like the researchers of the Amsterdam research, I am Dutch, living in the Netherlands and the whole country resonated with this "discovery": national TV, national newspapers, foreign press, etc., etc. And I was thinking: But wait a minute, we already know this. Not only as patients, but also as scientists. It has already been empirically established and hence scientifically proven that PEM is a manifestation of distorted cell metabolism. So what's the fuss about? But then, I am really grateful for the recognition, which is long overdue, since PEM exists so much longer than LC. And also this sense of recognition is a mixed bag of feelings, for why is illness only real once we find something physical? It really makes me think, both as an LC patient and as a scholar.
I had a second infection September 2023. I think I answered the question last week, but I have some further observations, so I'll share again...
Short term, I had insomnia for about a month, because my brain was not "shutting off" properly. I am also experiencing more challenges with constipation, and absorbing water in my system. I had a cold that turned into a sinus infection that lasted about a month, so I suspect my immune system is thrashed.
In the next month or two, I will be able to mention any worsening of neurological symptoms; however, I am starting to notice some shortness of breath + racing heartbeat. If those don't pass on their own, as they did after my first bout of Covid, I will mention it to my doctor. No vertigo, though, so that's good.
About reinfection and whether it makes LC worse or better - I've experienced both. I've had covid 4 times now (pretty regularly every 5-6 months), having had 3 vaccines. First I had a 'normal' recovery and didn't develop LC, second I got LC and had debilitating fatigue, PEM then brain fog etc and then nerve pain in my legs and was mostly housebound, until the third infection which helped the fatigue within days, I could cook for myself again and all my symptoms improved including the nerve pain, and PEM. Then with the fourth infection the neurological symptoms, fatigue and PEM are worse again three months in, but not nearly as bad as they were.
Brandon -- could you mention this in an upcoming post? I can provide more info. The survey has been beta-tested for ~6 months, and it is now going live.
Join the NIH, FDA, and partners in advancing our understanding of the treatments of Long COVID. What
treatments are you taking and how have they impacted you? Take the CURE ID Treatments for Long COVID
Survey now by visi�ng CURE-ID (ncats.io) or download the “CURE ID” mobile app now!
You’re heavily engaged in reinventing the wheel. LC is another wastebasket diagnosis like CFS.
LC is in fact ME ! Everything you’re reporting is exactly the same as ME. So no way is it a different syndrome/condition - whatever.
Typically ME vectors through a viral infection which persists for longer than usual.
I’ve been at this since 1993 so I’ve had lots of experience and done masses of research.
Essentially ME is as a result of trauma. In my case 48 years of it. No wonder I’m so bloody ill !
Wonderful Dr Gabor Mate has much to say about chronic health conditions and trauma.
If you’ve not done so already, you’ll find him on YouTube. He seems to be the only ‘healthcare professional’ who’s actually working holistically. He so gets it, as you Americans say.
Thanks for your comment, Andrea! I can’t imagine dealing with this for my whole life, as you have. Just speaking from the perspective of one who helps edit the newsletter: we report on ME research whenever we find it, and are aware that at least 50% of people with Long Covid meet the criteria for a diagnosis of ME. Yes, they are absolutely the same thing, for so many people (including me)! And some of the LC research is absolutely reinventing the wheel. But now that so many more people have it, the research on post-infectious illnesses finally seems to be expanding somewhat. At least that’s what we all hope for.
I agree that LC is essentially ME and that some form of physical, emotional, or viral trauma causes it. I've had ME since 2019, and have felt lost in the medical wilderness. So I'm actually very happy for all the LC research that's being done and the outstanding reporting by Brandon. After all they are only a newsletter and not the RECOVER initiative which blew through a billion dollars reinventing the wheel. Alas that is the nature of research and bureaucracy. The main point is we are building momentum towards discovery and Brandon is highlighting that and giving us hope to hold onto!
I have not had a second infection, but my long hauler friends who have report everything from “meh - nothing really got worse from there existing LC baseline” to “holy shit, what is this fresh new hell?” Some of the latter had managed to get quite a bit better from their initial infection/LC and so the setback (with worsening symptoms or even a new set of symptoms) was particularly devastating. I also have a long hauler friend who has been infected five times and while she still has several LC symptoms, she’s been able to work p/t and function basically okay. It runs the gamut.
I have had the pneumovax. It was part of my infectious disease doctor’s plan for getting my health insurance to approve IVIG. She basically tested my pneumococcal antibodies, waited a month, gave me the pneumovax, waited another month, tested them again. I did not produce sufficient antibodies to the pneumovax so I was diagnosed with CVID (common variable immune deficiency) and insurance approved me for IVIG (which I did twice and had to stop due to side effects). In any event, I had no side effects or symptoms from the pneumovax, and I believe that’s what you wanted to know. And I do have MCAS as well, so it was not a sure thing that I wouldn’t have side effects.
Thank you for the detailed response here. That is crazy your friend has had covid 5 times. Even crazier is that I think that is becoming quite common. I appreciate the pneumovax comment, I had some worries but will likely get it now.
Here's an NPR story about the PEM findings. https://www.npr.org/sections/health-shots/2024/01/09/1223077307/long-covid-exercise-post-exertional-malaise-mitochondria
Thanks!
This couldn't be more confusing... Dr Putrino essentially says exercise is detrimental to PASC recovery, then suggests autonomic conditioning therapy, which, as far as I can tell, is exercise, just a bit less of it?
I had a second infection in September 2023 while visiting friends in another country (first infection was October 2021) and I was terrified that I would be back to square one in my Long Covid journey. I’m happy to say that did not happen. I took Paxlovid and rested intensely for 10 days after testing positive. I was then able to continue my journey around the UK visiting friends. I was careful about my pacing, rested hard when I got back home, and did a round of 10 HBOT sessions (after having done an original 40 HBOT sessions in summer 2023) to help get me back on track. I do not feel like my (very slow) recovery trajectory has been adversely affected by this second infection, which is such a relief.
Very to happy to hear Kit! How has your experience with HBOT been?
HBOT has been fabulous, the only thing besides time and cognitive/speech therapy that I felt has helped. I plan to do more when I can afford it
I'm curious about when you did the 40 sessions - did you have a time when you felt you were getting worse before you got better?
I'm actually sick with the wretched going arounds (not sure what -- there are several possibilities but tested neg for covid), and I think it broke what I was thinking was a remission. I was initially infected in March 2020 and once I got my strength back in June 2020, I took a bike ride and had to drape myself over the handlebars and use the bike as a walker to get home. I've been quite ill since, and barely remember late 2020-2022. In 2023 my health improved and lately I have felt strong enough to plan some desperately needed home repairs, but now it feels like POTS is back.
Sorry to hear that, hopefully the setback is only temporary.
Thank you. I think it is -- today has been much easier.
Yes, just as I started to have minimal improvements from Long COVID after 3 years, I got reinfected last March despite limiting time indoors, always masking, and essentially "doing everything right". I got Paxlovid, and rested as much as possible for several weeks (I already work from home so I played it really safe and took it easy with housework and walks, etc.). Despite this, I got substantially worse, developed new neurological symptoms (flashing lights, migraines, intermittent inability to form words), POTS, intermittent earaches and inability to use earbuds, flare ups of hip and shoulder issues, and significantly worsened insomnia, fatigue, and PEM.
I stayed on the same supplements I had been on as well as the LDN I'd been taking for a year at that point. The benefits from LDN essentially disappeared for about 6-8 months. Around that time, I was started on Amantadine and Midodrine, and got a Novovax vaccine. It's hard to know if one/a combo of these have been helping or if the flare of new/worsened symptoms would have gotten better with enough time, but some symptoms have trailed off and became less present or constant. I said that after my first infection in 2020 that my functional baseline had dropped to 50%, and just started to move toward 60% in early 2023. The second infection set me back to about 40%. On a good day I'm at about 45% now in terms of my capacity, but I'm rarely able to tolerate walks more than a couple blocks and there are still days I have to nap after showering.
Unfortunately, I've heard of many cases of worsened or returning LC after reinfection, though it's definitely not everyone and seems like a crapshoot. I hope the other reader, Michael, has a more fortunate experience than mine - it does sound like there are people who fair much better that this with reinfection. FWIW, my case was one detailed in this piece from last November.
https://clearhealthcosts.com/blog/2023/11/is-long-covid-a-remitting-relapsing-disease/
Sorry to hear about your experience. We need more treatments! I will take a look at your blog over the weekend, thanks for linking
Thank you, the article is really helpful. I think I got back to about 60% but last week I got whatever is going around and it feels like POTS returned. I'm still sick so maybe it will pass, but it's alarming.
My initial infection that caused LC was near the end of March 2020. I had a confirmed reinfection in May 2022, and was prescribed Paxlovid for it.
I'd say my results were mixed but generally positive. I had never previously had GI issues as part of LC, and I developed them after the reinfection. But my fatigue levels and brain fog hugely improved about a month-ish after the second infection. Not sure if that was the Paxlovid or that the second infection hit a bit of a reset on my immune system again. I do still have brain fog/memory stuff and PEM, but it is much more manageable now than it was before my second infection, so overall I consider it a net gain even though the GI stuff has been a fun new wrinkle to manage.
Wow interesting, the immune system resetting sounds like it could be applicable in your case.
Re: second infection, my story may be of interest. I currently suspect 3 infections, March 2020, June 2022, and November 2022.
The suspected March 2020 infection was super mild, which breathlessness and toe sores being the main symptoms. At the time we thought we may have it, and can trace the potential exposure, but there’s no way of knowing if we were actually infected so we can set that one aside for now.
May/June 2022 was a confirmed infection. Again, very mild with fatigue and breathlessness the only symptoms. Tested positive for two weeks from the end of May until early-mid June. By July I started experiencing significant neurological symptoms that felt extremely similar to post-concussion symptoms: severe depression, brain fog, sensitivity to light and sound, and occasional episodes of what I can only describe as what I imagine dementia to feel like. I made changes in my diet and behavior to reduce inflammation, and started to see some improvement to where I could go a week or two without much issue.
In November 2022 my partner tested positive, but I did not. However, I suspect that I had an infection that was not active enough for an antigen test to show. Either way, my existing symptoms all went through the roof, and new symptoms started: tachycardia, histamine intolerance, severe fatigue, orthostatic intolerance, PEM, dysautonomia, and a few others that I’m sure I’m forgetting. Fast forward to today, and my most debilitating symptoms are fatigue, dysautonomia, and PEM.
I’ve heard stories of people getting better with subsequent infections. As with all of this, though, it seems there are just too many variables to know why or how. Perhaps some types of LC respond to heightened immune responses, while others get worse. Certainly a lot to learn out there!
Thanks for the detailed response, Michael. Yes it seems like the results are extremely heterogenous depending on the person. We definitely need a study looking into this.
Hi,
regarding a 2nd infection after already having been diagnosed with LC: I first got infected in July 23 while on rehab due to a stroke suffered in February. In mid September symptoms of LC like fatigue, PEM and feelings of suffocation appeared. While on rehab again in October and November because of the stroke, I got infected again, but the acute phase was only a few days. The other symptoms worsened a lot though and it is only now getting back to the level prior to the second infection.
I am sorry to hear about your reinfection history Ulrich. Hopefully things turn the corner soon.
Below is an interview and a link to research study referred to, about Covid re-infection. The articles primarily address whether a re-infection can bring on Long Covid or more severe acute Covid, but there is an inference about how, if you already have post-acute sequelae, you can get worse, or different symptoms with the next infection. I think we put this study in one of the previous newsletters.
https://www.statnews.com/2023/09/20/do-long-covid-odds-increase-with-second-infection/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9671810/
Thanks for linking, Amy!
Hi Brandon, many thanks for the weekly newsletter that keeps me up-to-date with the newest findings about this horrible disease. I am recovering from LC (into it for 17 months now) and I'd like to ask your opinion about the research done by the Bateman Horne Center that was worked into a series of informative videos about PEM for doctors: https://www.youtube.com/playlist?list=PL-OZ_5Cqdc309Gp1hO4PpUKQIsTlyUf04. I thought I got these via you, but it turns out I got them from Tom Harris's LC Newsletter (New Zealand). In my view (but I'm not a medic) these videos (I think from mid-2023) provide the same kind of data and empirical substantiation as the Dutch research about PEM that you highlight in your most recent newsletter as "really important" (https://www.nature.com/articles/s41467-023-44432-3) . I agree with that, but I actually don't think it is new. It has just not been in people's attention enough. I actually think the findings of the Bateman Horne Center are more informative (see particularly videos 3 and 4) than the ones recently published by Amsterdam . The BHC conducted multiple exertion tests and found that people suffering from PEM could not meet the results on their second day of exercise that they could meet on their first day. Moreover, the researchers involved participants with other serious illnesses (such as MS, but without PEM) and they found that the "altered cellular metabolism" was only found in those participants with PEM, not those with MS, which means that this distorted cellular metabolism is unique for PEM. However, I am not quite sure where the findings of the BHC were published. I did forward the videos to my GP, though, and I think it was very informative for all the doctors there. It makes me think about the workings of science (I'm a scholar myself), and the ways in which knowledge spreads or not, and is picked up or not, even by peers in the discipline. Like the researchers of the Amsterdam research, I am Dutch, living in the Netherlands and the whole country resonated with this "discovery": national TV, national newspapers, foreign press, etc., etc. And I was thinking: But wait a minute, we already know this. Not only as patients, but also as scientists. It has already been empirically established and hence scientifically proven that PEM is a manifestation of distorted cell metabolism. So what's the fuss about? But then, I am really grateful for the recognition, which is long overdue, since PEM exists so much longer than LC. And also this sense of recognition is a mixed bag of feelings, for why is illness only real once we find something physical? It really makes me think, both as an LC patient and as a scholar.
Barbara, thanks so much for sharing those PEM videos from the Bateman Horne Center.
I had a second infection September 2023. I think I answered the question last week, but I have some further observations, so I'll share again...
Short term, I had insomnia for about a month, because my brain was not "shutting off" properly. I am also experiencing more challenges with constipation, and absorbing water in my system. I had a cold that turned into a sinus infection that lasted about a month, so I suspect my immune system is thrashed.
In the next month or two, I will be able to mention any worsening of neurological symptoms; however, I am starting to notice some shortness of breath + racing heartbeat. If those don't pass on their own, as they did after my first bout of Covid, I will mention it to my doctor. No vertigo, though, so that's good.
About reinfection and whether it makes LC worse or better - I've experienced both. I've had covid 4 times now (pretty regularly every 5-6 months), having had 3 vaccines. First I had a 'normal' recovery and didn't develop LC, second I got LC and had debilitating fatigue, PEM then brain fog etc and then nerve pain in my legs and was mostly housebound, until the third infection which helped the fatigue within days, I could cook for myself again and all my symptoms improved including the nerve pain, and PEM. Then with the fourth infection the neurological symptoms, fatigue and PEM are worse again three months in, but not nearly as bad as they were.
Thanks for sharing your story, Kate. I am sorry you have gotten infected 4 times! Did you have access to Paxlovid for any of the infections?
No I didn't know about it, I'm in the UK and not sure how I would get it.
Brandon -- could you mention this in an upcoming post? I can provide more info. The survey has been beta-tested for ~6 months, and it is now going live.
Join the NIH, FDA, and partners in advancing our understanding of the treatments of Long COVID. What
treatments are you taking and how have they impacted you? Take the CURE ID Treatments for Long COVID
Survey now by visi�ng CURE-ID (ncats.io) or download the “CURE ID” mobile app now!
Sorry I just saw this! Is this still open?
Yes. It is open indefinitely. The goal is to get ~1000 case reports.
You’re heavily engaged in reinventing the wheel. LC is another wastebasket diagnosis like CFS.
LC is in fact ME ! Everything you’re reporting is exactly the same as ME. So no way is it a different syndrome/condition - whatever.
Typically ME vectors through a viral infection which persists for longer than usual.
I’ve been at this since 1993 so I’ve had lots of experience and done masses of research.
Essentially ME is as a result of trauma. In my case 48 years of it. No wonder I’m so bloody ill !
Wonderful Dr Gabor Mate has much to say about chronic health conditions and trauma.
If you’ve not done so already, you’ll find him on YouTube. He seems to be the only ‘healthcare professional’ who’s actually working holistically. He so gets it, as you Americans say.
Thanks for your comment, Andrea! I can’t imagine dealing with this for my whole life, as you have. Just speaking from the perspective of one who helps edit the newsletter: we report on ME research whenever we find it, and are aware that at least 50% of people with Long Covid meet the criteria for a diagnosis of ME. Yes, they are absolutely the same thing, for so many people (including me)! And some of the LC research is absolutely reinventing the wheel. But now that so many more people have it, the research on post-infectious illnesses finally seems to be expanding somewhat. At least that’s what we all hope for.
Hi Andrea,
I agree that LC is essentially ME and that some form of physical, emotional, or viral trauma causes it. I've had ME since 2019, and have felt lost in the medical wilderness. So I'm actually very happy for all the LC research that's being done and the outstanding reporting by Brandon. After all they are only a newsletter and not the RECOVER initiative which blew through a billion dollars reinventing the wheel. Alas that is the nature of research and bureaucracy. The main point is we are building momentum towards discovery and Brandon is highlighting that and giving us hope to hold onto!