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this is absolutely fascinating to me. needs more documentation.
"Long Covid," because regular COVID wasn't fake enough
- Thread starter 𝓶𝓸𝓷𝓽𝓹𝓪𝓻𝓷𝓪𝓼𝓼𝓮
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this is absolutely fascinating to me. needs more documentation.
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Dianna has spent the last year and a half in her room, unable to watch tv or read a book or spend time with friends.
She cannot walk or take care of herself. She can brush her teeth and feed herself, but not much more than that. We can cuddle and hold hands, but sometimes that's too much for her. It's so removed from normal life, and so much worse than you could ever imagine.
It's hard to share these things, because I fear people will blame me or blame her for not treating her properly, for not taking this medication or that supplement, or following such and such a protocol. Or worse yet, suggesting that all she needs is to get up and go for a walk.
Even on this post, people will say those things.
But there's no consistent treatment or even diagnostics at this point. So, we are left alone, in pain, wondering if what we're doing is right or wrong, if there's something else we should have done a year ago that would have avoided all this. We try not to think like that, but it creeps in from time to time.
She cannot walk or take care of herself. She can brush her teeth and feed herself, but not much more than that. We can cuddle and hold hands, but sometimes that's too much for her. It's so removed from normal life, and so much worse than you could ever imagine.
It's hard to share these things, because I fear people will blame me or blame her for not treating her properly, for not taking this medication or that supplement, or following such and such a protocol. Or worse yet, suggesting that all she needs is to get up and go for a walk.
Even on this post, people will say those things.
But there's no consistent treatment or even diagnostics at this point. So, we are left alone, in pain, wondering if what we're doing is right or wrong, if there's something else we should have done a year ago that would have avoided all this. We try not to think like that, but it creeps in from time to time.
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I had parosmia for a few years after having covid and it eventually went away but it was awful, definitely wanted to kms all the time. Some ppl thought I was faking or exaggerating until I became malnourished and severely underweight due to not eating. This isn’t directly related to the post but it did give me a different perspective than I had had previously.
long covid and ME/CFS all seem to be in their head. Let’s throw out the large portion of ppl that are faking or overreacting for attention. If they are just imagining feeling pain does that make it any less “real” to them? Is depression “real?”
The major problem with these illnesses is that the main symptoms are brain fog and being tired, which everyone feels to some degree all the time.
long covid and ME/CFS all seem to be in their head. Let’s throw out the large portion of ppl that are faking or overreacting for attention. If they are just imagining feeling pain does that make it any less “real” to them? Is depression “real?”
The major problem with these illnesses is that the main symptoms are brain fog and being tired, which everyone feels to some degree all the time.
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whether or not it's psychosomatic is extremely important because that determines how you treat it
if it isn't psychosomatic, then much more research needs to be conducted in order to figure out how to treat it -- we don't even know if the pathophysiology of CFS is a neurological or metabolic. if this is like "morgellons," then these people should probably just take antipsychotics.
extreme symptoms with very limited objective evidence of physiological impairment makes me think this is more like morgellons
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show me physical/cellular/bloodwork abnormalities other than inflammation and atrophy that probably comes from being bedridden and malnourised, otherwise:
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physics girl's "i can't read books or watch TV, but i can brush my teeth" also makes me think it isn't neurological damage or metabolic or immunologic-musculoskeletal damage from covid and is just a bizarre manifestation of delusions, which could be based in something that was at one point physical (covid does cause fatigue) but is probably no longer physically there. she was/is probably atrophied and depressed and ya
some kind of autoimmune syndrome secondary to covid would probably be the most plausible thing that *isn't* delusional, but i think her doctors would easily pick that up and then treat her with immunosuppressants
like, lupus causes severe fatigue, but if someone has lupus, you see abnormal antibodies... (in addition to the obvious things)
i'm not an expert on this, but it seems like ME/CFS is what you diagnose someone with if you can't find anything else. i'm not gonna say ME/CFS is "all in your head" for everyone, but when it is "all in your head," that's probably what you're going to be diagnosed with.
i guess it COULD BE very specific brain damage caused by inflammation caused by overactivation of the immune response caused by covid, but where is the evidence? why don't we see such insanely severe and persistent fatigue even in well-known, chronic, severe autoimmune diseases? why isn't CFS ever secondary to cytokine release syndrome or sepsis (which is MUCH more severe than any possible deranged immune response to covid)?
post-sepsis syndrome is probably the closest thing, but it isn't nearly as bad as what physics girl has, and it's caused by an immune response that nearly killed you in the ICU. which didn't happen to physics girl as far as i know.
some kind of autoimmune syndrome secondary to covid would probably be the most plausible thing that *isn't* delusional, but i think her doctors would easily pick that up and then treat her with immunosuppressants
like, lupus causes severe fatigue, but if someone has lupus, you see abnormal antibodies... (in addition to the obvious things)
i'm not an expert on this, but it seems like ME/CFS is what you diagnose someone with if you can't find anything else. i'm not gonna say ME/CFS is "all in your head" for everyone, but when it is "all in your head," that's probably what you're going to be diagnosed with.
i guess it COULD BE very specific brain damage caused by inflammation caused by overactivation of the immune response caused by covid, but where is the evidence? why don't we see such insanely severe and persistent fatigue even in well-known, chronic, severe autoimmune diseases? why isn't CFS ever secondary to cytokine release syndrome or sepsis (which is MUCH more severe than any possible deranged immune response to covid)?
post-sepsis syndrome is probably the closest thing, but it isn't nearly as bad as what physics girl has, and it's caused by an immune response that nearly killed you in the ICU. which didn't happen to physics girl as far as i know.
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>Although it is unclear whether long-COVID is a different disease entity or represents the same condition as PSS, we deliberately decided to describe the long-term sequelae of sepsis irrespective of the specific pathogen.
www.ncbi.nlm.nih.gov
maybe it's... a psychosomatic condition secondary to PSS? but how many people who claim to have #LongCovid were sent to the ICU by covid? answer: not all of them. there are people who claim to have long covid who have never tested positive for covid and have no evidence of ever having had covid based on serologic testing. so uh. clearly the psychosomatic part is what is essential. hermmmmm
maybe we're mixing together the loonies with the people who have fatigue caused by their immune response which we're also calling "post-covid syndrome." and maybe there are people with a little of both.
Understanding Post-Sepsis Syndrome: How Can Clinicians Help? - PMC
Sepsis is a global health challenge, with over 49 million cases annually. Recent medical advancements have increased in-hospital survival rates to approximately 80%, but the escalating incidence of sepsis, owing to an ageing population, rise in ...
www.ncbi.nlm.nih.gov
maybe it's... a psychosomatic condition secondary to PSS? but how many people who claim to have #LongCovid were sent to the ICU by covid? answer: not all of them. there are people who claim to have long covid who have never tested positive for covid and have no evidence of ever having had covid based on serologic testing. so uh. clearly the psychosomatic part is what is essential. hermmmmm
maybe we're mixing together the loonies with the people who have fatigue caused by their immune response which we're also calling "post-covid syndrome." and maybe there are people with a little of both.
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you have no idea how many years i've been trying to tell people this exact thing word for word
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https://www.thefp.com/p/hurts-so-good
Being recognised as sick is a form of validation. Like cutting your tits off, or deciding that the 27th guy who fucked you in 2019 actually raped you.
Being recognised as sick is a form of validation. Like cutting your tits off, or deciding that the 27th guy who fucked you in 2019 actually raped you.