(Thread IKs:
PoundSand)
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Man, I'm in bed for a month and the thread gets closed and reopened, is it just a normal reboot or do I need a recap.
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Aug 16, 2023 08:56
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| # ¿ May 12, 2024 02:45 |
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Hey so my partner is starting a new job in a few weeks where they'll have to be in the office for stretches at a time, they'll be masking but I was also wondering if anyone had some recommendations for a small, portable desktop air purifier they can bring with them.
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Aug 27, 2023 03:43
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Thank you to everyone, it is much appreciated.
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Aug 27, 2023 05:14
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Also goddamnit, the QT3 is sold out in Canada.
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Aug 27, 2023 05:16
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The new trend from Long Covid denialists/BPS school proponents/FND pushers seems to be re-branding their forty year old regurgitated garbage as "bold" and "new" and "fresh" and "a paradigm shift". gently caress these people. https://twitter.com/AlanCarson15/status/1705674937497751842 https://twitter.com/benryanwriter/status/1706436832022471162 (Also, who the gently caress is that Eli Klein dude? He shows up in literally every Long Covid thread making GBS threads on patients. He seems to do nothing but harass the sick and disabled, what a vile, ugly, horrible little man.) A good rebuttal in which Dr. Iwasaki is trying her goddamned best to not betray her incredulity at the lack of evidence or even a convincing disease mechanism offered by the FND proponents. https://twitter.com/AnilvanderZee/status/1705051650405069241 (ME/CFS history pt. 4 coming at some point, last three months have been 80% in bed, and when I was up I was building a Linux based Plex streaming server for my parents/me to use and populating it with
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Sep 26, 2023 16:52
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Zugzwang posted:Wifezwang and I watched a livestream service for Yom Kippur. About half the congregants were unmasked while the other half were almost entirely in properly-secured N95s or KF94s. I've never seen so many in one place. The bimodal distribution was pretty drat striking. Half of my Jewish friends possess a demeanour as such I can only describe as "zen fatalist" and the other half are some of the most wonderfully neurotic people I've ever been blessed to know, so that distribution absolutely tracks for me.
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Sep 27, 2023 01:33
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Pingui posted:The issues with kid PASC rates mentioned in this piece, are and have always been, a major concern to me. I think I've mentioned it a few times over the threads, if not explicitly in regards to children, certainly in regards to the adult research. Either way the caveats mentioned here are important to keep in mind when reading any PASC research. Great article, brought here in full due to the subject matter. the article posted:
Very cool how nothing ever changes and these poor kids are going to experience the same cycle of misdiagnosis and medical abuse I went through as a nine year old when I first got sick back in '97.
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Oct 13, 2023 02:01
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tangy yet delightful posted:A @thephysicsgirl update, I know we've discussed her posting and videoing about long covid before so thought I'd share this: Some of the responses honestly make me want to just cry because I've been pretty close to bed bound lately, and these loving freaks just harass and abuse. It just makes you feel more disbelieved, more helpless. I hate it. I hate it. I hate it.        
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Oct 31, 2023 12:12
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https://bsky.app/profile/ryanlcooper.com/post/3kebarqbmfp2d https://bsky.app/profile/ryanlcooper.com/post/3kebarqbmfp2d Ryan Cooper is such a dumb loving piece of poo poo. He's on a tear on Bluesky doing a bunch do weird Covid denialism and minimizing long Covid simply because he doesn't like Taylor Lorenz, who yeah is kind of annoying, but her being annoying seems to have signalled to a certain kind of male "leftist* that it's okay to say that chronic illnesses are totally fake and that it's cool and funny to alternately mock the people who live with them and pity them for being mentally ill headcases. https://bsky.app/profile/tinyhoncho.bsky.social/post/3keamcyrvas2m I can't stand this poo poo anymore, and it just seems to be getting more and more prevalent.
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Nov 16, 2023 02:04
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It's just so loving frustrating, as if living with a severely limiting chronic condition didn't suck enough, you get to endure mocking derision directed at you every third time you open social media, and each time it's coming from someone you previously thought was funny/smart/pretty okay. I'm halfway to just letting the Canadian government loving euthanize me at this point because after taking a look around at who's supposed to be my "comrades" it becomes materially obvious that things aren't even going to improve in the realm of understanding or cultural awareness, let alone improve medically. Meanwhile with $26.05 in the bank account, some "Marxist" is quote-tweeting you, cracking jokes about how you're secretly a well-paid defence industry contractor because that's what disabled people on the internet always are! You just don't exist anymore, and nobody gives a poo poo. The worst part is that more and more people are going to find themselves in this exact same position and when they speak up they'll have their experiences, illnesses and lives hand waved away as "aberrations" or "statistical outliers". That's if they're even believed in the first place. Hellequin has issued a correction as of 07:35 on Nov 16, 2023 |
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Nov 16, 2023 02:55
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RealityWarCriminal posted:e:don't read the comments Why don't I listen. I know they're going to be bad, and the Sun is worse than the NY Post for being a rag. Still I was not prepared.  
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Dec 21, 2023 11:19
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Got yelled at for wearing a mask for the first time today; I was on my way to the grocery store, a six minute walk from my apartment, and some guy coming the other way stars screaming at me, calls me a retard, asked if I was going to keep wearing it for the rest of my life, said the pandemic was over. He seemed really pissed off, honestly thought he was going to attack me. He looked like a libertarian if you know what I mean, you know the type.
Hellequin has issued a correction as of 08:21 on Dec 31, 2023 |
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Dec 31, 2023 05:36
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Steve Yun posted:https://x.com/lauramiers/status/1743375993669087302?s=46 Dugger is a complete loving crank who has absolutely no idea what he's talking about. He's somehow leveraged his HIV status and the fact that he writes hospital billing (and bail bond) software as some kind of medical expertise, he's currently selling assessments on his website for neurodegeneration based on a similar test they give to like terminal AIDS patients. His other crusades are claiming Paxlovid will destroy your liver and kidney functions immediately and attacking ME/CFS patients/advocates/researchers as condemning people to dementia for making comparisons between long covid and ME/CFS and not buying into his "SARS Associated Neurological Decline" (his term) theory. If you ever actually dig into any of his threads it becomes obvious he's got no idea what he's talking about, he'll repeat the same half-truths and weird phrases regardless of context and just say some really loving odd things. The guy is a toxic element, he should be laughed out of the room and frankly the size of his platform is disturbing. Hellequin has issued a correction as of 05:13 on Jan 7, 2024 |
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Jan 6, 2024 15:03
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https://twitter.com/awgaffney/status/1744747930597105691 https://twitter.com/awgaffney/status/1744807864760205730 Honestly, what the gently caress is wrong with this guy at this point.
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Jan 10, 2024 21:21
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Pingui posted:Very thorough study trying to determine the cause of post-exertional malaise (PEM), as well as defining the condition in biological terms. I have tried cutting it down as much as I could (still a bit unsure if I should have kept the amyloid deposit stuff in; I'll just note that they were outside the vessels indicating they didn't form microclots), but nevertheless it is pretty long. Pretty pictures though and that's gotta count for something :P Oh good, someone did post this study, anyway just wanted to pipe in and say that these findings of mitochondrial dysfunction mirror exactly the things they were finding in ME/CFS patients back in the late '80s/early '90s before the Wessely people took over and monopolized research dollars for decades. Whoopsie crumbles. 
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Jan 13, 2024 10:36
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Why Am I So Tired posted:It's a really good piece. Alice Wong is great. Yeah Alice Wong is an S-tier disability rights activist. A few months back she got yelled at a bunch by a lot of the less disability aware zero-Covid twitter people for daring to post a picture of herself maskless at a museum, which is a very good example why voices like her's are important and need to be louder. It's a good piece, and depressing to read because I know that masking is never coming back en masse, a point which was emphasized to me today after getting being told to take off the "face diaper" for the second time in a month. You'd think this wouldn't happen walking down Bloor St. W. in the middle of the afternoon but  .
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Jan 19, 2024 02:52
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https://twitter.com/yesallcrops/status/1748801099782316356?t=g7bwF_M3uOosgi5kX10VCA&s=19 Yikes
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Jan 20, 2024 22:22
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Huh, I got blocked by @fitterhappierAJ because he's running some mass blocklist?
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Jan 21, 2024 05:47
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lmao, yeah I'm not phoning a guy to state my case for why I should be unblocked because he got pissy over being called out for misogyny.
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Jan 21, 2024 07:51
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A sub group of (mostly white male) Long Covid patients who have been toxic for a long time and who have previously harassed other patients (mostly women) got really pissy that none of the speakers at the Senate hearing on Long Covid were white men, they didn't feel "represented", anyway he went into a Twitter space hosted by that group and basically said that people who talk about medical misogyny, racism etc. when it comes to Long Covid are plants sent to disrupt the movement and need to be shut down. He got pretty gently called out and responded by blocking thousands of people, mostly women, including the woman who made useful infographics based on his work.
Hellequin has issued a correction as of 08:13 on Jan 21, 2024 |
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Jan 21, 2024 08:03
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It's that same faction that keep denigrating ME/CFS patients and deny any connection between the two.
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Jan 21, 2024 08:05
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https://twitter.com/RealGayArbys/status/1748869687704690757
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Jan 21, 2024 08:23
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Pingui posted:Yeah, it sounded and reads more like him going "chill dude" than him being misogynistic. Yeah, I'm whatever about it, I just think his reaction was very weird and overboard and did not look good. A simple apology would have been fine, instead there was that weird story about his mom and then blocking thousands of people. Also just as a context for the LCAP group hosting the space he was in, this thread kinda goes into the sort of people involved with it. I've pretty much stopped interacting with any long Covid stuff on any social media platform because the whole space has gotten really weird. I wanted to help out people new to the whole chronic illness thing but I quite literally don't have the energy for this kind of bullshit. https://twitter.com/mildTin/status/1749203176115626129?t=hx9WqODHz7IuOlJgLvPCIQ&s=19
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Jan 22, 2024 01:25
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bedpan posted:friend of mine let me know their thoughts on long covid: it is entirely psychosomatic. I offered some examples of how people are experiencing continuing issues after the initial illness is addressed. Response was that psychosomatic illnesses are real to the delusional and that the afflicted are making those issues manifest by belief alone.  But seriously, people who think things like are always the first to abandon you if you're ever unfortunate enough to experience long-term/chronic health issues (speaking from experience). Livo posted:[...] Funny that you come in here, but yeah as a weird quirk of geographical location, Australia managed to avoid the GET/CBT bullshit that got pushed as a treatment for ME/CFS on both side of the Atlantic by UK psychiatrists. There were just never any big conferences in Australia that hosted the people who pushed it, and there weren't many Australians who ever attended conferences elsewhere that did. The academic-industrial ties between institutions from Australia and those in UK/US/Canada just didn't and still don't really exist like the ties between British, Canadian and American institutions. You guys kind of did your own thing and wound up with much better (or at least less abusive) basic care. The struggles I hear from Australian ME/CFS patients tend to be a lot less extreme and more in line with just the general struggles all disabled people face (benefits are difficult to access and insufficient, that sort of thing), it's also why there really isn't as organized or as militant of a patient base. The organized patient groups really coalesced in opposition to treatment that was proven over and over again to be harmful, forced institutionalization, revocation of disability benefits etc.
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Jan 26, 2024 19:51
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silicone thrills posted:I stopped after number 3 because each time i got one the side effects were getting worse for me and that was with switching it up on brands. I stopped after four even though I'm technically high risk, the side effects were just so extreme and would knock me out for days and then three months after getting vaccinated a new variant would be dominant and that protection meant nothing. I wear my Aura when I go out, I'm only ever out for thirty minutes a week, and people close to me are pretty good about masking so it just doesn't seem worth it anymore.
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Jan 29, 2024 00:32
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Steve Yun posted:Plague Inc is on sale on PlayStation. Recommendable? I put like a hundred hours into this back in 2015 when I was procrastinating writing grad school applications. Worth it. Great game. The Planet of the Apes scenario is hilarious fun too.
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Jan 30, 2024 11:24
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Shiroc posted:I'm not gonna try to find the rest of this to inflict it on me but does he ever fully realize he's the bad guy in this or is it just a quirky anecdote for him? His youngest sister was frequently the target of bullying and snarky remarks regarding her mental health/living conditions/etc. in pieces he wrote for the New Yorker and when she killed herself he wrote a lovely self pitying piece. He is scum.
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Jan 31, 2024 11:47
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The big NIH study on ME/CFS that launched back in 2017 was published today. Any hope of it having relevance to Long Covid is moot though, because it's s giant loving piece of poo poo that was performed in bad faith. It concludes that Post-Exertional Malaise is a result of "an alteration in exertion preference" and deconditioning. Poorly interpreted data that is poorly reported, a tiny sample size of cherry-picked subjects, improperly followed protocols, everything that would mark a study as of poor quality is here and it's all in service of perpetuating negative stereotypes. The authors even ignore and discount their own data which serves to contradict their (predetermined) conclusions. This is bad faith science. Call me a cynic and a pessimist, but this is so egregiously poor that it's enough for me to believe this is a deliberate attempt to bury and dismiss ME once again. Here it is anyway: https://www.nature.com/articles/s41467-024-45107-3 And here's a Twitter thread detailing everything wrong with it from someone with relevant credentials and research experience because I'm too out of it to type anything further up. https://twitter.com/sunsopeningband/status/1760247967582437670?t=DRvJXLDwUiKcCUH88nqZvQ&s=19 This was a waste of resources, a waste of time, and a betrayal of patient faith and trust. The authors should be ashamed. But they won't because the lead author is Brian Wallit who had already arrived at the conclusions before the data was even gathered as per some of his previously stated opinions:   This was doomed from the start and we already kind of knew that. https://www.meadvocacy.org/nih_sidesteps_critical_problems_with_the_me_cfs_study Anyway this probably bodes poorly for Long Covid sufferers as well. Hellequin has issued a correction as of 15:22 on Feb 21, 2024 |
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Feb 21, 2024 13:36
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It gets better, one of the study case adjudicators/co-authors was also a peer reviewer. This was a con job.
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Feb 21, 2024 14:22
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NeonPunk posted:Hey wait. Isn't that illegal? That feels like it should be illegal Not illegal, but almost assuredly academic fraud and generally something that doesn't happen with papers published in a Nature journal. This whole thing stinks. It's like the NIH had a predetermined outcome in mind, one which would exonerate them for not funding a study of ME/CFS since 1989 and which wouldn't force them to apologize for the years of neglect, or have to fund further studies, or in any way upset the status quo. So they went looking for the three most toxic and obnoxious lead investigators they could find. Guys who would net them that outcome no matter what they actually found. And this is who they came up with:    I'm certain someone's being paid off somewhere along the line, or that someone nudged someone else and said, "Hey we can't actually afford to help these people if we agree it's a real thing, just pretend it's fake like we did last time."
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Feb 21, 2024 15:33
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NeonPunk posted:It does feel like they're trying to find the sweet spot between finding a treatment and awareness for Long Covid because it does also impact the rich people, and to deny that it's a disabling condition because hoo boy imagine how much disability $$$ the government will have to pay out The last estimate I saw was $250 billion in private disability insurance claims. I don't know what the number would be for government claims.
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Feb 21, 2024 15:43
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The Oldest Man posted:
It's really awesome how frequently and how much these psychosomatic ideologues rely on brain activity MRI scans, continually fooling the public into believing that it's real science, when it's been known for over a decade that those scans can be used to prove a dead fish can recognize human facial expressions. They're loving meaningless. https://www.wired.com/2009/09/fmrisalmon/
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Feb 21, 2024 20:20
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Huh, just found out that @falconryfinance straight up plagiarized some of my posts here and in the old thread. Very cool. My dude I've got less than 100 followers on Twitter, 57 on tumblr (my old account where I had cross posted the long essays was deleted out of nowhere in December and I had 390 followers there) and you've got 41k. Kind of a lovely thing to steal the work of a disabled guy with no following.
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Feb 22, 2024 15:29
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Pittsburgh Fentanyl Cloud posted:The guy was permabanned something like a decade ago and still obsessively reads this forum, his life is its own punishment. poo poo is he Guy Mann or am I thinking of someone else.
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Feb 22, 2024 16:38
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https://www.cbsnews.com/boston/news/boston-mbta-state-street-station-woman-pushed-toward-tracks/ Some guy in Boston tried to drag an older woman onto the subway tracks for wearing a mask. Cool.
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Feb 25, 2024 12:53
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| # ¿ May 12, 2024 02:45 |
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Strep Vote posted:They don't think anything's wrong, op. They're a goon, or former goon, dunno if they read the thread or still have an account. (We're tumblr mutuals.) Did everyone see the loving abysmal Freddie De Boer Covid piece in Truth Out? It's bad. Anyway, he's now harassing Long Covid patients who tried to educate them by telling them it's fake it. https://twitter.com/leslieleeiii/status/1770042999541530983 https://twitter.com/jewstein3000/status/1769423278450319656 Hey, remember when he spread fake rape accusations about Malcolm Harris and tried to ruin his life and then said he'd log off? Why the gently caress did we let him come back.
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Mar 21, 2024 00:48
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