Cerises 🇨🇵

Antivirals (taken in first hours after infection or symptoms) are the only thing that can prevent #LongCovid . If false or not efficient paths are taken for the cure of Long Covid, we will forever be at risk of several cumulative #LongCovid

@CovidSolidarit1 Chais pas, tant de gens toxiques au boulot+ sensation d'être dans la roue sans issue comme un écureuil, souvent des sous effectifs , peu de forces et de temps pour faire des choses agréables, y a pleinement de quoi faire des burnout. Mais bon je connais pas les situations exactes

@Moooonflash Oui, mais bon, bcp de ‘burnouts’ non?

Living with Covid

@seanstidston 😱

There’s so many grifters out there, I see women who’s social media accounts are related to the gym but say they need shower stools. Genuinely it’s grifting.

all i can say is thank god for biktarvy. and shoutout to all those who came before us and made it possible. because i'd been afraid to push too hard and risk crashing but got forced into it and so far.... i hurt like hell and feel like shit but still managing. Would not have been possible last year.

@EvitorialPage @seanstidston @Michaeltikus 1.3 ATA is more gentle (more slow) and has some differences in action compared to higher ATA (logical). Here are some research papers on 1.3, 1.25 ATA. There's a FB group about mHBOT with lots of positive personal experiences.

@Moooonflash @seanstidston @Michaeltikus There is not consistent clinical data showing improvements below 1.4 ATA, but I've seen lots of anecdotal evidence. Any pressure/oxygen should be supportive. I agree that chronically ill people can react (I know I did), due to a variety of factors, and it's a risk.

I find this totally fascinating. Pre-COVID I was a scientific diver, but in retrospect think I may already had some signs of orthostatic intolerance. However, in water... no problems at all, it was my most comfortable place to be. Unfortunately for many people with #longcovid accessing diving is out of the question given skills barrier/logistics. @chydorina might be interested.

@joaniej0243 They'll be in the same mess, whining without ever admitting their mistakes :-(

@Moooonflash I think they all have stockholm syndrome, I wonder what they'll do when they wake up?

Even the most moronic comments put out by mainstream doctors, it appears that most people will defend them, why is that?

@seanstidston @EvitorialPage @Michaeltikus 1.3 ATA and not 100% oxygen normally is ok (tried it with my severely damaged tissues by Covid). But too much oxygen= risk of ROS, oxygen is an oxidant above a certain level. And our damaged by Covid bodies manage ROS very badly (lack of glutathition etc).

@Moooonflash @EvitorialPage @Michaeltikus Yeah my concerns are that oxygen has to travel in capillaries that are damaged and compromsied, alongside the clotting issues. Giving more could well make things worse.

@joaniej0243 @DrRogerHugh Yes, and to look at them as stupid and crazy things, as less than nothing, which is what they do for the patients, especially those for whom they are too incompetent and lazy to make a diagnosis.

@Moooonflash @DrRogerHugh They should also be forced to take their own mind altering drugs and then abruptly discontinued.

Think modern medicine has it all figured out? Get bitten by a tick, develop a chronic infection, watch it get misdiagnosed for years and the only ‘treatment’ doctors offer is an SSRI. It doesn’t matter the specialty you see, or how elite the hospital is.

@DrRogerHugh The worst part is how easy it is to be committed to a psychiatric hospital because of the cruelty and profound ignorance of these so-called doctors. I hope that one day they will be held accountable for their actions and face the same fate themselves. Punitive psychiatry.

@EvitorialPage @Michaeltikus Exactly, it's anti-inflammatory+ more oxygen in tissues

@Michaeltikus This may be partly why HBOT helps. Puts you to 17-34 ft of depth pressure (1.5 and 2.0 ATA) with pure oxygen.

@1goodtern I watched GOT just recently so I remember well :)

Is there anyone left who can remember how good the first four seasons of Game of Thrones were?

@CovidSolidarit1 Working with children is not better....

Ever wonder who'd want to work in healthcare if authorities admitted pathogens are airborne? Would you?

@CovidCastaways @RokoMijic The author is THE problem and is not able to understand this.

Long COVID is unique. The Long COVID cohort is a Long COVID one, and SARS-CoV-2 is persistent. Perhaps people need to start thinking about how they talk about things because the it’s a big part of the problem (post-viral, suggesting LC is the same as everything else, etc.). Also, not all chronic disease is viral based.

One of the problems with post-viral illnesses like long covid and so on (ME, CFS, Fibromyalgia) is that the patient community is dominated by women and even though there are tens of millions of us, not much gets done because they're mostly women (about 2/3-70%) and have created a culture of care and emotion rather than actually trying to rigorously study the diseases and fix them. I won't post specifics because I don't want to get scapegoated but it's pretty horrific to watch. There's also a very toxic back-and-forth with some scammy psychiatrists who successfully pushed the idea that post-viral illnesses are entirely psychosomatic, so patients became very hostile to the medical system and the medical system was unable (for a long time) to really decisively prove that post-viral conditions are "real". Long covid has significantly advanced the cause by creating a massive cohort of people all at the same time. It's a total shitshow.

@SalvMattera Using the words post viral, MECF, fibromyalgia at the same level... just indicates that the author of the post is THE problem.

This post is clearly misogynistic, but I think he's getting at some truth that I've observed. A lot of chronic illness patients have lost everything, so the disease itself becomes their identity. Then they develop these very strange, cult-like social dynamics. I don't think it has anything to do with them being women, because I often see just as many men in these communities emphasize this stuff. Questioning a popular treatment becomes betrayal. Critiquing a study the community likes becomes attacking the community. Demanding rigor gets reframed as dismissing suffering. And the people who should be the angriest are instead policing language, sharing supplement studies with heart emojis, and treating compassion as a substitute for science. There is also some weird gate keeping around different identities - what it means to have ME/CFS, what it means to have POTS, who experiences PEM or what it even is. It's not even clear how accurate these labels are but people hold on to them like life preservers. To be fair, it makes sense. When you've spent years being told nothing is wrong with you, finally getting a label feels like validation. It's proof you're not crazy. Of course people cling to it. But the problem is that clinging to the label turns a diagnostic hypothesis into a tribal identity. And once it's an identity, questioning the label becomes an existential threat. If someone suggests that ME/CFS is actually several different diseases, that feels like erasure. If someone questions whether PEM as currently defined is precise enough to be useful in research, that feels like denial. The label that saved you from being dismissed becomes the thing that prevents actual science from being done. And the gatekeeping serves a social function too. "I have ME/CFS" becomes a status within the community. If the diagnostic boundaries shift, your place in the hierarchy shifts. So people police the borders not because the science demands it but because their social position depends on it. Lately, I've been reading more about Larry Kramer as I've been thinking about ways to replicate what he did. Originally, Kramer helped create an organization called GMHC to fight for the rights of people with HIV. But over time, it became a support organization that provided services and comfort but avoided confrontation. Kramer got pushed out for being too angry. The community chose care over confrontation. People died but everyone was nice!

@CovidSolidarit1 Oh ok I see 🤪

@Moooonflash Yeah i just meant go on strike - as in not do it!

Maybe Long Covid patients should go on strike with the self-management and being the experts on their own illness. Except no-one would notice or care, would they?

TREAT CHRONIC PATHOGENS #LongCovid #pwLC #LongCovidAwareness #ChronicPathogens