Thank you Emily for being our voice. And yes...long covid is real. Those of us who have it are unable to advocate for ourselves because of the horrific brain fog. The simplest of tasks, such as typing this comment takes all I can do mentally. I have no concentration span and no ability to think to deeply. Such a devastating life.
Were you able to ask Dr. Fauci about the physiology of ME/CFS and Long COVID?
At a Long COVID - ME/CFS scientific/medical at the Geisel School of Medicine, Dartmouth-Hitchcock Medical Center in early November some speakers characterized ME/CFS as a state experienced by some patients who had a Long COVID diagnosis. Both were broadly discussed as post-viral syndromes.
It's interesting that as early as the 1990's ME/CFS was hypothesized to be caused by defects or damage to mitochondria. With the intense research that has been spurred on by the COVID pandemic, mitochondria and their disorders have become an important focus of attention. Increasing attention is being placed on the hypothesis that mitochondrial dysfunction is an underlying cause of most, if not all Long COVID symptoms.
Why aren't providers having this discussion with patients? Largely, it relates to medical school training. Mitochondrial diseases have historically been categorized as 'orphan or genetic' disorders. It's only been in recent years that many metabolic, neurologic and geriatric diseases have been recognized as sharing a variety of mitochondrial disorders. In general providers are trained to diagnose symptoms and to treat illness. Digging into the root causes of disease takes a different perspective.
This is such an important point; it's not focused on very much in medical school curriculum. There are an increasingly number of pieces coming out around this research though that is encouraging.
Interesting piece, but the last line puzzled me. Who *doesn’t* think LC is real in November 2023? It feels like the inclusion of this line kowtows to an ignorant minority who haven’t bothered to open any news app in two years. My doctors stopped questioning this by early-mid 2021. Fauci should have amplified messages about LC while he still had any influence.
Amy - nearly everyone I've interviewed has been told by at least one clinician that Long Covid isn't real. In some cases, clinicians are advised to focus on treating pre-existing conditions or symptoms that amplify rather than diagnose Long Covid because it presents with such heterogeneity. It's a real, persistent problem that many people are still struggling with.
I do understand that. And I feel awful for anyone who gets a doctor that says it’s not real. I think though that in the scientific community, the question of whether LC is real was laid to rest a long time ago. And Fauci wouldn’t really be my idea of the definitive, deciding clinician/scientist on the matter.
Incidentally, you’ve probably read this at some point or heard it from patients (like me), but most long COVID clinics are only really treating symptoms or sending patients internally to a maze of their in-house specialists, many of whom don’t actually know much either about LC. So it seems to be a multi-layered problem: 1) believing the illness exists, 2) believing the patient in front of you has it, and 3) offering them anything that’s actually helpful. Patient groups are more educated about LC still than your average doctor.
Thank you Emily for being our voice. And yes...long covid is real. Those of us who have it are unable to advocate for ourselves because of the horrific brain fog. The simplest of tasks, such as typing this comment takes all I can do mentally. I have no concentration span and no ability to think to deeply. Such a devastating life.
We don’t have strong evidence that LC is a real problem. This supposed LC problem has been hystericized, just as the virus itself was, by authoritarians on the Left. Sweden has the lowest excess mortality throughout the pandemic, they followed the science, they let the free choice of individuals dictate outcomes, not unjustified mandates from the center. https://open.substack.com/pub/vinayprasadmdmph/p/interest-in-long-covid-is-declining?r=tn6w0&utm_medium=ios&utm_campaign=post
Were you able to ask Dr. Fauci about the physiology of ME/CFS and Long COVID?
At a Long COVID - ME/CFS scientific/medical at the Geisel School of Medicine, Dartmouth-Hitchcock Medical Center in early November some speakers characterized ME/CFS as a state experienced by some patients who had a Long COVID diagnosis. Both were broadly discussed as post-viral syndromes.
It's interesting that as early as the 1990's ME/CFS was hypothesized to be caused by defects or damage to mitochondria. With the intense research that has been spurred on by the COVID pandemic, mitochondria and their disorders have become an important focus of attention. Increasing attention is being placed on the hypothesis that mitochondrial dysfunction is an underlying cause of most, if not all Long COVID symptoms.
Why aren't providers having this discussion with patients? Largely, it relates to medical school training. Mitochondrial diseases have historically been categorized as 'orphan or genetic' disorders. It's only been in recent years that many metabolic, neurologic and geriatric diseases have been recognized as sharing a variety of mitochondrial disorders. In general providers are trained to diagnose symptoms and to treat illness. Digging into the root causes of disease takes a different perspective.
This is such an important point; it's not focused on very much in medical school curriculum. There are an increasingly number of pieces coming out around this research though that is encouraging.
I'm aware. I'm a graduate of Dartmouth Medical School and a former faculty member there.
Interestingly, about a third of my readers are medical providers and scientists.
Interesting piece, but the last line puzzled me. Who *doesn’t* think LC is real in November 2023? It feels like the inclusion of this line kowtows to an ignorant minority who haven’t bothered to open any news app in two years. My doctors stopped questioning this by early-mid 2021. Fauci should have amplified messages about LC while he still had any influence.
Amy - nearly everyone I've interviewed has been told by at least one clinician that Long Covid isn't real. In some cases, clinicians are advised to focus on treating pre-existing conditions or symptoms that amplify rather than diagnose Long Covid because it presents with such heterogeneity. It's a real, persistent problem that many people are still struggling with.
I do understand that. And I feel awful for anyone who gets a doctor that says it’s not real. I think though that in the scientific community, the question of whether LC is real was laid to rest a long time ago. And Fauci wouldn’t really be my idea of the definitive, deciding clinician/scientist on the matter.
Incidentally, you’ve probably read this at some point or heard it from patients (like me), but most long COVID clinics are only really treating symptoms or sending patients internally to a maze of their in-house specialists, many of whom don’t actually know much either about LC. So it seems to be a multi-layered problem: 1) believing the illness exists, 2) believing the patient in front of you has it, and 3) offering them anything that’s actually helpful. Patient groups are more educated about LC still than your average doctor.