Brandon LC

@twitchyspoonie I think the problem with studying PEM is inducing it ethically. Researchers have a hard time justifying triggering PEM in subjects bc we know it can lead to longterm decline, and they have a hard time observing PEM bc crashed people struggle to leave the house

@twitchyspoonie The truth is we don’t know. We’ve measured cardiopulmonary fitness metrics in PEM, but we really have a shortage of knowledge regarding why PEM makes us feel so terrible. There are a lot of educated guesses out there, but anyone who claims to know for certain is lying.

I haven't been able to keep up with research as well as I used to, so can someone tell me. Has anyone looked into the inexplicable full body poison feelings you can get when you have ME? Bc I'd really like to know wtf that is.

@CovidCastaways Sorry, I am hesitant to use the word recover because I thought I recovered and relapsed hard. And I didn’t suggest bad treatments should work, just that we might attribute seeming-recoveries to treatments that aren’t responsible. That’s why we need good clinical trials.

@branscheur I didn’t say improve, I said recover. I also said, mainstream treatments are very good or don’t even exist at all. Why do we think bad treatments should work? That I don’t get.

People don’t seem to get ME/CFS. Let me explain it this way: No one with good testing & treatments cares about the dx. Shouldn’t that tell you something about its ultimate importance & uniqueness? The second Chronic Lyme, EBV, Long COVID, Mold, Candida, HHV6, Coxsackie, yada yada have good testing & treatments the vast vast vast majority won’t care about the dx of ME/CFS. It’s merely a symptomatic syndrome circle ⭕️ with the symptoms it uses in its definition. It’s not specific in the way that matters most & everyone cares, the root cause. People’s PEM will start resolving once there are good tests & treatments for chronic pathogens & other things because it’s caused by many different things, so why would people be concerned with a term that exists only because the root cause of clusters weren’t identified or treated. Get a grip people & stop arguing some unimportant semantical argument to make some silly point because you have a weird attachment to a contrived symptomatic syndrome term. This is life & death, not a game for your feelings & ego (so many here can take this advice here). Logic should rule arguments if you care about solutions & patients. #LongCovidIsUnique #LongCovidCausesPEM #ChronicLymeCausesPEM

@CovidCastaways To spell it out: If the illness naturally goes into remission for some people, and those people have tried dozens of things over time, then of course they will attribute their remission to the most recent thing they tried. I think this does actually happen.

@CovidCastaways That many people recover in different ways doesn’t entail that there are many underlying pathophysiologies. Suppose, for example, the illness naturally goes into remission for some people. (I’m not saying this is the case, just that the entailment you mentioned isn’t valid.)

@CovidCastaways (2) improve by treating underlying pathogens. Lots of people don’t improve via either of these methods.

@CovidCastaways (1) I’m sorry but you’re one person. I’m genuinely happy for you that you managed to improve so much. But just as we can’t conclude PEM is psychosomatic because some people improve with brain retraining, we can’t conclude it’s due to persistent pathogens because some people…

@CovidCastaways I want to be clear and say we don’t actually know PEM is caused by one mechanism. My point is that we also don’t know that it’s caused by different ones.

@CovidCastaways This take is premature. We don’t actually have a fantastic understanding of long covid or chronic lyme. Tons of people take relevant antibiotics and antivirals and don’t get better. It’s not just a semantic issue. For all we know, the same mechanism is causing PEM in them all

@1goodtern Honestly I don’t 100% blame that person. We were all repeatedly told by the institutions we’re supposed to trust that (1) covid is no big deal if you’re young and otherwise healthy and (2) that the pandemic is over. It’s hard for them to believe both are false.

I met someone a month ago who told me that Long Covid was the condition of people who had been affected by being in lockdown in 2020. After I picked my jaw from the floor, I gently corrected them.

@SalvMattera It’s an IL-15 agonist and, as far as I know, IL-15 hasn’t been consistently implicated in these illnesses. But of course things might not be so simple.

I really don't know anything about it, but I'm always skeptical of magic beans that claim to treat everything

The discussion about this drug in the Long COVID space has always felt very strange to me.

@singingsox @abbymachines Right his tweet seems like it was engineered in a lab to piss people off. It’s so angering that I almost can’t believe it’s genuine. Unfortunately I know that there are in fact people who think like him. Crazy.

@abbymachines Clearly, if he’s even real. Such a sad existence

These are the kind of people you’re agreeing with/letting pop into anti-mask comment sections btw. When disabled people tell you that anti-masking agrees with fascists, listen to us. These are the people in your tent when you leftistly call us “crazy” & “mentally ill” for masking

@HumanManifold “These mice are clearly depressed, anxious, and deconditioned.”

Eine der "Mäuse-Studien" zu Long-COVID wurde jetzt peer reviewed veröffentlicht. Bin gespannt auf die nächste Ausrede der Anhänger des psychosozialen Modells, warum das nicht keine Kausalität zeigt. Zuvor wurde gerne argumentiert, dass es nur ein Pre-Print sei.

I think many of us would tolerate fatigue, orthostatic intolerance, and brain fog if we knew we could just push through it without having to worry about PEM. There is no more important treatment target than PEM.

It’s very hard to study PEM because it’s very hard to justify inducing it when we know it can cause longterm deterioration. It’d be cool to have studies where researchers can rush out to participants’ homes when they crash naturally. Easier said than done of course!

@NeleHelena Well, the biopsychosocial doctors certainly ARE experts in chronically ignoring ME/CFS patients!

So in Belgium they screened the German ME documentary "Chronically Ignored" at a major documentary festival last weekend. And they invited two of our most prominent biopsychosocial doctors to comment on it 😳

1) Had a look at Putrino's trial on "Microtesla Magnetic Therapy" for Long Covid. Unfortunately, I don't think the trial shows effectiveness. They used 44 outcomes that weren't pre-registered or corrected for multiple comparisons so differences might simply be due to chance.

@useless_priest I swear exercise seems like it could help nearly all of our problems if we could just freaking stop getting PEM 😭

Damn, is that another benefit of exercise?

@envidreamz I don’t know what they will prove, but so far the fact is neither illness is defined by biomarkers, but symptoms. If biomarkers end up demonstrating various different pathophysiologies, then that’ll be great. But we aren’t there yet and don’t know what the future holds

@branscheur I still don’t think it is the same. When the biomarkers for testing for ME/CFS and also ones for long COVID eventually come out, that should give the answers. And it will prove they are both distinctly different

ME/CFS is real. Millions are living it and suffering through it. That is not up for debate. But here in 2026, we need to be honest. If you are newly diagnosed with ME/CFS there is a very high chance you are actually dealing with Long Covid. And Long Covid is not just a rebrand. It is a different disease with a different cause. Mislabeling Long Covid does not help patients. It is further delaying answers. And it’s already been 6+ years.

@D_Bone I’m sorry but long covid research is receiving tens to hundreds of times more funding than ME/CFS research depending on the country. What exactly is being buried here other than ME/CFS?

Billy who cos-played as someone with #LongCovid and later admitted he had #MECFS for years, who helps run an ME org that conflated this illness which helped to bury it. - Wants to play source news on Twitter regarding the burial. Don’t be like Billy.