Yes, please. Would be nice to have a life again.
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…
- There is no approved treatment for Long COVID, nor is there any rigourous large scale clinical trials showing benefit in objective measures
- There are multiple biological differences between long COVID and Depression
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.
Even if they have a covid-related autoimmune disease?
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.
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.
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.
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…
Which is easily disproved as people started having long covid long before we had vaccines.
I think i’ve had something like Long Covid from March 2020 till June 2021. But i’m not entirely sure, i never got an official diagnosis. Symptoms included general feeling of weakness, not being able to take any stressful events, a bizarre feeling of nausea that was there with basically every minor task. Symptoms, in general, were similar to ME/CFS.
I practically didn’t leave the apartment much for 1.5 years except to buy food and stuff like that. I must say, however, that i don’t feel this weak anymore. So in some sense, it has partially improved.
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.
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!
Viruses infect human cells to reproduce, in the process replacing snippets of DNA causing longterm irreversible damages.
Those who were not able or not willing to protect themselves from infection without first building a resistance to the spike protein target antigen cannot be cured.
We knew this long before the Sars-CoV-2 strain was even discovered, it’s prevalent in the chicken pox virus which causes shingles later in life and in many other persistent viral diseases.
Keep spreading awareness so that the next generation can learn from our failures.
