Dr Topol, I am so grateful for your dedication to help address the suffering of people with long covid and ways to reduce its future incidence. This collection of crucial information surrounding long covid is invaluable.
According to Dr. Vinay Prasad on his recent substack post, a colleague said to him, "“These people (those who are still taking precautions such as masking) are wrong and delusional. They are out of touch with reality. Normal people don’t care about COVID anymore. They have forgotten. The more you talk about it, the more you validate that it is something worth talking about. We shouldn’t test for it, or do anything about it. Long COVID is functioning primarily to earn hospitals money from their dubious clinics. The best thing we can do is to move on with life.” I think there are quite a few doctors who think this way, but I'm not sure of the percentage. I hope this data will change their minds, but I doubt it, as minds are never easily changed. Keep up the good work and I hope they find a cure for ALL post-viral syndromes.
Thank you, Dr Topol. I am genuinely grateful as I read your long-covid article. I am one of those with long covid and went through most of the prevalent, discussed symptoms as well as endured through the distrusts by my PCP & some HCP of making things up as I recovered.
I was saying back in 2020 that in my own opinion Covid was a vascular disease rather than a long disease, and had the capability to colonize the body via the endothelial tissues. Maybe there was some truth to that theory. I'm now in my fourth year from infection and still hosting some lingering symptoms.. most have weakened but occasionally flare up again. Some however have never moderated. None were present pre-covid. The brain aging news is alarming since one of my two lingering symptoms involve parkinsonian symptoms.
It seems like we need to start formally carving long Covid into distinct categories defined not only by symptoms but also by evolving biomarkers and syndrome phenotypes. Much as cancers are now classified by TNM, histological, and biomarker profiles. Each is a slightly different disease within their umbrella, and therefore can present different targets for treatment. It’s one of the promises of individualized immunotherapies for cancer based on each unique phenotype and genotype… at least that’s how the future contours might look to me from primary care.
Dr Topol, Your articles are invaluable! Permit me a logical extension for LC. Apparently, LC is now associated with severity of disease. If this is so, doesn't it make sense to treat active C19 infections with 10 days of paxlovid and not 5 days? Thank you for all you do!
Thank you for an understandable explanation. Listened to the Congressional hearing and am heartened by the attention LC received (but why did it take so long?). Concerned that this will become a money problem when there really is no such thing as a shortage of funds. Shortage of researchers? perhaps. Doctors to treat? Probably. Medical educators? Infrastructure to perform studies? These are the real resources we should be focused on and funding to get more of if we need them. Don't fall for money being a problem; it's the easy part.
Those of us who have suffered with chronic Lyme have also had many issues after having ( much guessing ) long Covid. Nervous system issues keep the nightmare going.
Any interest in helping those afflicted with both?
We are here to be studied. The journey with Chronic Lyme has been a 39 year nightmare....
I have a mutation in Complement component 3 that prevents the alternative pathway from shutting off (similar to a CFH mutation but presents some additional issues). I had severe post-concussion syndrome after a head injury and had very similar symptoms with acute SARS-CoV-2. I'm almost 4 years now with long COVID and have always felt my complement mutation was likely involved. I emailed Apellis pharmaceuticals to try to get a trial going for pegcetacoplan for both acute and Long COVID. I think they were investigating acute cases but not long COVID.
Eric – thanks for this great post. 43 y/o San Diegan here suffering from LC for 19 months now. Formerly one of better 40+ y/o athletes in nation and successful finance job. Currently out of work due to host of disabling cognitive and physical symptoms and been self-managing thru pacing, stress reduction, diet and nervous system regulation practices. I’m also a Scripps patient (though I have found zero answers from doctors) and live in the area if you or someone you know ever need a volunteer for LC potential trials. Lastly, my chief lingering symptom is somatosensory/tactile – all touch on skin is different and mostly uncomfortable/rough…even seeing movement/friction or hearing things (a bit “static” y). Curious if based on your research you think this is from damage to the skin system/organ and processing of touch or if this is more of a neurological/brain misfiring issue. Quite debilitating and don’t run across it in any LC forums/research. Thanks again for this great research and all the links…though still a bit unclear for LC sufferers what best path forward is beyond what I’m doing:)
Dr Topol, I am so grateful for your dedication to help address the suffering of people with long covid and ways to reduce its future incidence. This collection of crucial information surrounding long covid is invaluable.
According to Dr. Vinay Prasad on his recent substack post, a colleague said to him, "“These people (those who are still taking precautions such as masking) are wrong and delusional. They are out of touch with reality. Normal people don’t care about COVID anymore. They have forgotten. The more you talk about it, the more you validate that it is something worth talking about. We shouldn’t test for it, or do anything about it. Long COVID is functioning primarily to earn hospitals money from their dubious clinics. The best thing we can do is to move on with life.” I think there are quite a few doctors who think this way, but I'm not sure of the percentage. I hope this data will change their minds, but I doubt it, as minds are never easily changed. Keep up the good work and I hope they find a cure for ALL post-viral syndromes.
Thank you, Dr Topol. I am genuinely grateful as I read your long-covid article. I am one of those with long covid and went through most of the prevalent, discussed symptoms as well as endured through the distrusts by my PCP & some HCP of making things up as I recovered.
Happy 100th Anniversary!
I was saying back in 2020 that in my own opinion Covid was a vascular disease rather than a long disease, and had the capability to colonize the body via the endothelial tissues. Maybe there was some truth to that theory. I'm now in my fourth year from infection and still hosting some lingering symptoms.. most have weakened but occasionally flare up again. Some however have never moderated. None were present pre-covid. The brain aging news is alarming since one of my two lingering symptoms involve parkinsonian symptoms.
One more comment!
It seems like we need to start formally carving long Covid into distinct categories defined not only by symptoms but also by evolving biomarkers and syndrome phenotypes. Much as cancers are now classified by TNM, histological, and biomarker profiles. Each is a slightly different disease within their umbrella, and therefore can present different targets for treatment. It’s one of the promises of individualized immunotherapies for cancer based on each unique phenotype and genotype… at least that’s how the future contours might look to me from primary care.
Dr Topol, Your articles are invaluable! Permit me a logical extension for LC. Apparently, LC is now associated with severity of disease. If this is so, doesn't it make sense to treat active C19 infections with 10 days of paxlovid and not 5 days? Thank you for all you do!
Thank you for an understandable explanation. Listened to the Congressional hearing and am heartened by the attention LC received (but why did it take so long?). Concerned that this will become a money problem when there really is no such thing as a shortage of funds. Shortage of researchers? perhaps. Doctors to treat? Probably. Medical educators? Infrastructure to perform studies? These are the real resources we should be focused on and funding to get more of if we need them. Don't fall for money being a problem; it's the easy part.
Ty for this. Again, the complement system. That explains everything! Where all the bad stuff begins.
Those of us who have suffered with chronic Lyme have also had many issues after having ( much guessing ) long Covid. Nervous system issues keep the nightmare going.
Any interest in helping those afflicted with both?
We are here to be studied. The journey with Chronic Lyme has been a 39 year nightmare....
I have a mutation in Complement component 3 that prevents the alternative pathway from shutting off (similar to a CFH mutation but presents some additional issues). I had severe post-concussion syndrome after a head injury and had very similar symptoms with acute SARS-CoV-2. I'm almost 4 years now with long COVID and have always felt my complement mutation was likely involved. I emailed Apellis pharmaceuticals to try to get a trial going for pegcetacoplan for both acute and Long COVID. I think they were investigating acute cases but not long COVID.
Eric – thanks for this great post. 43 y/o San Diegan here suffering from LC for 19 months now. Formerly one of better 40+ y/o athletes in nation and successful finance job. Currently out of work due to host of disabling cognitive and physical symptoms and been self-managing thru pacing, stress reduction, diet and nervous system regulation practices. I’m also a Scripps patient (though I have found zero answers from doctors) and live in the area if you or someone you know ever need a volunteer for LC potential trials. Lastly, my chief lingering symptom is somatosensory/tactile – all touch on skin is different and mostly uncomfortable/rough…even seeing movement/friction or hearing things (a bit “static” y). Curious if based on your research you think this is from damage to the skin system/organ and processing of touch or if this is more of a neurological/brain misfiring issue. Quite debilitating and don’t run across it in any LC forums/research. Thanks again for this great research and all the links…though still a bit unclear for LC sufferers what best path forward is beyond what I’m doing:)
Congrats Dr. Topol on the 100th anniversary of Scripps Research!!
Cheers! Shannon Dickson