After over 30 years in private practice, during which many people have come to my office, having been seen and denied any validity to their concerns from every other doctor they had seen, with what we now recognize as ME/CFS, it is gratifying to finally see that with the COVID pandemic MD’s and researchers are finally gathering data, and hypothesizing treatments for PASC, and ME/CFS. I about lost my shit, when Dr. Daniel Griffen, on TWIV Clinical Update #1188, this past Friday mentioned, with a few citations taVNS (transcutaneous auricle Vagus Nerve Stimulation). If Dr. Griffin were in the room with me, I would have had a difficult time not whacking him about the head and shoulder with printouts of the myriad studies done on this technique.
From the timestamps, episode notes on #1188:
Transcutaneous vagus nerve stimulation improves Long COVID symptoms in a female cohort (Frontiers in Neurology) 28:03
https://www.frontiersin.org/journals/neurology/articles/10.3389/fneur.2024.1393371/full
Transcutaneous vagus nerve stimulation trials:
https://www.mountsinai.org/clinical-trials/tvns-in-long-covid-19https://www.centerwatch.com/clinical-trials/listings/NCT06585254/tvns-in-long-covid-19 30:55
Devices:
https://pulsetto.tech/products/meet-pulsetto?pulsetto_offer_id=57&transaction_id=1024e5a0258b6647e262ba8fec5d62https://www.dolphinmps.com/product/dolphin-neurostim-professional-single-kit-vagal-stim-kit/ 29:41, 31:16
A method for stimulating the vagus nerver where it comes to the surface of the body at the cymba concha region of the auricle/ear. I first came across this method from a paper published in August 2019, and much work has been published in the intervening years. Imagine, a cheap, non-invasive way to use electrotherapy, think TENS unit with a clip elecctrode for the auricle, and a stickon electrode on the upper trapezius (can you say it with me “CHEAP AND EFFECTIVE”), to effectively stimulate the Vagus nerve and re-balance the autonomic nervous system. Dysautonomia is a key symptom in PASC, and ME/CFS. I’ve been recommending this to patients for a couple years in the hope and reasonable expectation that it would help, and now there is a body of research to support it’s use. PubMed, search taVNS, tVNS, and you will see what I’m talking about.
We had psychiatrists claiming it was mass hysteria until fairly recently.
Honestly i’m still not sure, but what if it is? Is there any proof that it is not?
I think that there’s never been found any physically measurable indication for ME/CFS or Long Covid. From all we know, either it’s hormone-meditated and we have no fucking clue what hormone(s) do(es) it, or it is really psychological, maybe some mechanism buried deep within the subconscious.
With newer mri machines we can show an inflammation in the brainstem in ME/CFS patients. Since those machines are rare, expensive and often not necessary for a dignosis we don’t know a lot yet.
900 people is a fairly small sample size for a study like this, and the data is entirely self-reported. Given that long covid is suspected to be autoimmune-related and the 17.9% that reported worsening symptoms after vaccination, it seems premature to recommend everyone with long covid immediately get the vaccine.
I’m not a medical professional and you probably aren’t either, so we shouldn’t be taking one study and running with the shaky conclusions it draws. Let the scientific community do their work.
Would be a good start if doctors even started to acknowledge it.
After over 30 years in private practice, during which many people have come to my office, having been seen and denied any validity to their concerns from every other doctor they had seen, with what we now recognize as ME/CFS, it is gratifying to finally see that with the COVID pandemic MD’s and researchers are finally gathering data, and hypothesizing treatments for PASC, and ME/CFS. I about lost my shit, when Dr. Daniel Griffen, on TWIV Clinical Update #1188, this past Friday mentioned, with a few citations taVNS (transcutaneous auricle Vagus Nerve Stimulation). If Dr. Griffin were in the room with me, I would have had a difficult time not whacking him about the head and shoulder with printouts of the myriad studies done on this technique. From the timestamps, episode notes on #1188: Transcutaneous vagus nerve stimulation improves Long COVID symptoms in a female cohort (Frontiers in Neurology) 28:03 https://www.frontiersin.org/journals/neurology/articles/10.3389/fneur.2024.1393371/full Transcutaneous vagus nerve stimulation trials: https://www.mountsinai.org/clinical-trials/tvns-in-long-covid-19 https://www.centerwatch.com/clinical-trials/listings/NCT06585254/tvns-in-long-covid-19 30:55 Devices: https://pulsetto.tech/products/meet-pulsetto?pulsetto_offer_id=57&transaction_id=1024e5a0258b6647e262ba8fec5d62 https://www.dolphinmps.com/product/dolphin-neurostim-professional-single-kit-vagal-stim-kit/ 29:41, 31:16 A method for stimulating the vagus nerver where it comes to the surface of the body at the cymba concha region of the auricle/ear. I first came across this method from a paper published in August 2019, and much work has been published in the intervening years. Imagine, a cheap, non-invasive way to use electrotherapy, think TENS unit with a clip elecctrode for the auricle, and a stickon electrode on the upper trapezius (can you say it with me “CHEAP AND EFFECTIVE”), to effectively stimulate the Vagus nerve and re-balance the autonomic nervous system. Dysautonomia is a key symptom in PASC, and ME/CFS. I’ve been recommending this to patients for a couple years in the hope and reasonable expectation that it would help, and now there is a body of research to support it’s use. PubMed, search taVNS, tVNS, and you will see what I’m talking about.
Yep! Even large swaths of the medical field are ignoring it.
We had psychiatrists claiming it was mass hysteria until fairly recently.
Honestly i’m still not sure, but what if it is? Is there any proof that it is not?
I think that there’s never been found any physically measurable indication for ME/CFS or Long Covid. From all we know, either it’s hormone-meditated and we have no fucking clue what hormone(s) do(es) it, or it is really psychological, maybe some mechanism buried deep within the subconscious.
With newer mri machines we can show an inflammation in the brainstem in ME/CFS patients. Since those machines are rare, expensive and often not necessary for a dignosis we don’t know a lot yet.
Mine said the symptoms and treatment were the same as depression anyway
I’m sorry you experienced gaslighting. Fuck that doctor for misinformation they said…
But yeah shitty doctors tend to just blame it on depression because they are too lazy to learn about something new.
There are a number of studies suggesting that covid vaccines may improve long covid symptoms. Here is one such study: https://pmc.ncbi.nlm.nih.gov/articles/PMC9146071/#:~:text=There was considerable individual variation,long COVID patients%2C on average.
So while I’m not sure it counts as an approved treatment, it sure seems like it’s worth trying (if you haven’t already).
900 people is a fairly small sample size for a study like this, and the data is entirely self-reported. Given that long covid is suspected to be autoimmune-related and the 17.9% that reported worsening symptoms after vaccination, it seems premature to recommend everyone with long covid immediately get the vaccine.
I’m not a medical professional and you probably aren’t either, so we shouldn’t be taking one study and running with the shaky conclusions it draws. Let the scientific community do their work.
I feel pretty comfortable recommending that people get the covid vaccine.