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Yeah, I've written about my experience with long COVID once or twice. I'm one of the lucky ones who has finally gotten to "mostly recovered". Lots of people have had it much worse than me. Dianna Cowern/Physics Girl for just one example.
I'm still iso-fuckin-lating like it's August 2020, though. I have no idea what would happen to me if I got COVID again.
hey look it's my favorite advocacy group, Berlin Buyer's Club!
They are so based
their public talks and protests on TikTok really helped with my hopelessness as a long COVID person
If you need a community — I have found by far my favourite community to be the https://s4me.info/ forum. A lot of researchers are there — the vibe is generally nice. And people have a generally good scientific background so it’s not full of people recommending random unproven shit and claiming all sorts of unproven BS.
tysm!
Some people with long COVID are confined to their beds with lifelong damage, some are even tubefed, or have lost the ability to speak.
We gotta start taking this seriously instead of erasing it!
https://www.longcovidadvoc.com/
Would be a good start if doctors even started to acknowledge it.
Yep! Even large swaths of the medical field are ignoring it.
We had psychiatrists claiming it was mass hysteria until fairly recently.
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.
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.
As a wage slave peasant slated for homeless extermination in the USA, left behind due to physical disability caused at the hands of another–only worry about what you can change, greave your losses over time, and be very skeptical of anyone with a cure. If you search hard enough, you will always find someone willing to take money. I found one after 13 neurosurgeons.
At least we can do the dystopia party together here. Hopefully some venture capital billionaire will come down with Long Covid, fund the research, and an extortion free cure will become publicly available.
Unapologetically frame your narrative in the untethered emotional reality of your life experience. If nothing else, it is therapeutic to tell yourself on some level you can be heard. I've been in Covid-like isolation for nearly 11 years.
Apart from claiming long COVID is hysteria or exercise and raw milk will magically fix it, the new right wing gimmick is saying Long COVID is caused by the vaccines…
