Trying to survive this sars2 apocalypse via my love of horror, and with my loved ones. LC since 1st infection 1/2022. Hard times.

Joined March 2020
New On Topic: "Viral Persistence & Long Covid. Parallels with HIV/AIDS" now available.
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New On Topic: "Viral Persistence & Long Covid. Parallels with HIV/AIDS" now available.
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Trying therapy again after all these years. And my last therapist not understanding me after I got covid. Or me feeling misunderstood. Today, startout talking about whatever. Then mention covid. And they say something like, “oh, going back to the safe topic.” #LongCovid #Therapy
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As if covid is what I want to be talking about! No, anything but covid. But covid keeps hijacking my life. So, sorry I can’t entertain them with talking about my “desire” when I’ve been up all night hacking up a lung thanks to needing to get my teeth drilled off. Exhaustion.
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CAN MEDICAL AND HEALTHCARE FACILITIES PLEASE HAVE PROPER AIR FILTRATION?!!! WHY IS THIS AN ISSUE IN 2026?! IN ORDER TO GET TREATED FOR HEALTH ISSUES YOU HAVE TO GET RE-INFECTED BY YOUR PROVIDERS. #CleanAirForAll
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I went to Columbia University Dental clinic again on Friday. I’m very thankful that my dentist was able to “restore” all my front lower teeth. However, I was up a lot of last night with an intermittent, hacking cough, and today I’m coughing. #Covid #CleanAir
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Does anything on the ceiling here look like it provides air filtration? Or is this just for AC and heat? No, my dentist was not wearing an N95. It was just a surgical. And there were people unmasked around me. We desperately need proper ventilation.
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@Columbia: Your dentists are amazing They go above and beyond in what they’re capable of doing. It costs like $80K/year now, not including cost of living, to attend your school. DO YOU THINK YOU COULD INSTALL PROPER AIR FILTRATION IN YOUR CLINICS TO STOP SPREAD OF COVID?!! WTF.
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It’s so fucked that you have to get sick just to get treatment. I probably lost my teeth because I delayed getting treatment because I was afraid of catching covid. This is all so fucked. #CleanAir #LongCovid
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On topic education spaces Also recorded Peer Support Group Sunday Brunch Spaces LongCOVID perspectives pod cast Trivia on Spaces Brain went dead lol please add on I know there is more What side are you on?, What have you done to help? Patients Helping Patients #pwLC
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There’s more than meets the eye in Japan. It’s risky, Patients are declining over time, and now the pitch is shifting to “you’ll have to do it again and again” All for the low price of selling your home.
Does the Edogawa protocol in Japan work? Data for 31 patients shows significant improvement in cognitive, cardiovascular and musculoskeletal symptoms after treatment. IMO, this is the best treatment option available for the severely injured who have exhausted all other options. @NIHDirector_Jay
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I'm being publicly characterised as "aligning with violent people" and being "completely okay with violent people". It's a serious, untrue and unwarranted allegation. I was immediately blocked with no interaction with her at all, I wonder what evidence they have for it?
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lol. I’m blocked by Long Covid Advocacy. That’s where we’re at in 2026.
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As someone who has had LC for almost 5 years, I can say, AS FAR AS IM CONCERNED, YOURE COMPLETELY WRONG. THE BEST THING I DID WAS TO KEEP EXERCISING. I had to dramatically reduce it, but if anything, I wish I had t paid attention to all these BS MECFS conflations with LC.
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I WISH I’D PUSHED MYSELF HARDER SND EXERCISED MORE. WHENEVER I EXERCISE I ACTUALLY FEEL MENTALLY SND PHYSICALLY BETTER. LC IS NOT MECFS. #LongCovid
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*I see the typos. I don’t have time to redo. I’m about to lose my teeth. Thanks so much for the MECFS conflation with LC.
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And another day begins. Sitting in waiting room at Columbia Dental. I’m masked. I’m too scared not to mask. Room is packed. No one else is masked. 3 visibly disabled people, too. We need clean air/ventilation. #LongCovid
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💯.
Replying to @LongCovidAdvoc
Thanks for taking the time to give specific examples. Some of this relates to patient advocacy rather than research findings. But being helpful to people with Long Covid who have this particular symptom pattern is quite different from demonstrating a finding about Long Covid itself. It also doesn't apply equally to every person with LC, just a subset. Likely a relatively small percentage when all LC effects are taken into consideration. Percentages will always be debateable of course but a lot of sufferers go unnoticed when one group has a lot of funding, recognition and pre-existing orgs with which to communicate. What I'm interested in is the stronger claim I often hear: that Long Covid can draw on decades of ME/CFS research to understand its underlying biology. For that claim, I'd still be interested in five specific biological/pathophysiological discoveries made through ME/CFS research that have subsequently been demonstrated to be relevant to Long Covid; rather than general energy management lessons, overlapping symptoms, or hypotheses that still need to be tested in Long Covid. The CPET, cerebral blood-flow and metabolic findings are interesting, but the question is whether they've actually helped us understand Long Covid specifically, rather than simply providing untested hypotheses for LC. Some of these findings aren't even consistent across LC studies. And finally, I'm not sure why you added the point about "solidarity & mutual support & concern for all". I haven't suggested that people with ME/CFS, or people with any other condition don't deserve support or concern. My question was specifically about the evidence for what ME/CFS research has contributed to our understanding of LC. I think it's perfectly possible to support people with ME/CFS and ask whether Long Covid has distinct biology that deserves SARS-CoV-2-specific research. Those positions aren't contradictory...but I am seeing far more focus on ME type presentations than the more frequent presentations of LC...and from a LC org that was unexpected and seems to lack focus on the wider patient community.
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