Olenka Sayko @coco_chatel

@GarrettPetersen Kinda amazing how mentally ill culture warriors are when it comes to immunocompromised people protecting their health.

‼️⚠️Please read this until the end. A widely shared article has presented a deeply misleading view of Long COVID, suggesting once again that cognitive behavioral therapy, exercise, and “mind-body” approaches may be the uncomfortable truth patients refuse to accept. This needs to be challenged. Not because the nervous system does not matter. Not because psychological support cannot help. But because confusing support with cure, physiology with psychology, and heterogeneity with “it might be in your head” is exactly how medicine has harmed post-infectious patients for decades. There are articles about Long COVID that look like science journalism, but in reality they repackage, in modern language, a very old idea: if we do not fully understand a disease, maybe the problem is in the patient’s mind. And that is not science. That is repeating history. The article begins with a striking sentence: “There isn’t a single approved pharmaceutical treatment, not even a test to verify the presence of the illness.” This may sound forceful, but it is a very misleading way of presenting the problem. The fact that there is still no drug specifically approved for Long COVID, or a single diagnostic test, does not mean that “nothing has been found.” It means that we are dealing with a heterogeneous disease, probably with several biological subgroups, and that medicine has not yet converted those findings into validated clinical tools. “No single diagnostic biomarker” is not the same as “no biology.” In just a few years, immunological, vascular, neurological, endocrine, and metabolic abnormalities have been described in subgroups of Long COVID patients: autonomic dysfunction, herpesvirus reactivations such as EBV/HHV-6, alterations in the cortisol axis, autoantibodies against GPCR receptors — including adrenergic and muscarinic receptors — persistent viral antigens, endothelial damage, muscle abnormalities after exertion, mitochondrial dysfunction, persistent inflammation, and differential immune changes. Is everything settled? No. Does that mean it is psychological? Also no. Science does not work like that. Multiple sclerosis did not stop existing before we had MRI. Many autoimmune diseases do not show up in routine blood tests. If a complete blood count, a basic biochemistry panel, or an X-ray comes back “normal, normal, normal,” that does not prove the absence of disease. It only proves that you are looking with inadequate tools. One of the article’s most serious mistakes is this: it confuses the absence of a simple clinical test with the absence of organic disease. And that mistake has caused harm for decades. The article also says: “Almost $2 billion and half a decade of international effort have yielded little more than hypotheses about micro blood clots and spike proteins and mitochondrial dysfunction.” No. That is not correct. A hypothesis is a provisional explanation. But when you compare patients and controls and find significant differences in muscle tissue, metabolism, response to exertion, immune biomarkers, viral antigens, autoantibodies, or vascular dysfunction, you are no longer talking about “little more than hypotheses.” You are talking about lines of biomedical evidence that still need to be organized, replicated, stratified, and translated into treatments. That is not scientific failure. That is research into a complex and new disease. 🔵Continued in the next post.👇🏻 (1/6)

WIRED @WIRED

2 days ago

Six years since the height of the pandemic, the scientific community remains baffled by long Covid. But there might finally be a way forward for long Covid treatment—if only you were allowed to talk about it. wired.com/story/the-pain…

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I have never fist pumped a thread before but here we are! So worth a read.

tern @1goodtern

18 hours ago

Ok. I've read "The Painful Truth About Long Covid" six times through, and I'm ready. Here are ten clues in the article that point to the writer's bad faith.

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@sunsopeningband Thank you as always for your tireless dedication to deshittify the lives of folks with complex chronic illness.

I didn't have it on my calendar to do any writing this week. That...changed. Unscheduled post on the Substack, up now. open.substack.com/pub/likeannope…

⚠️ I think this is exactly the problem. When patients with ME/CFS, fibromyalgia or Long COVID defend themselves, it is often framed as “protecting an illness narrative.” But if your disease were constantly minimized, psychologized, ignored, and left without biological treatments, while patients are told they are exaggerating or inventing symptoms, this would not feel like protecting a narrative. It would feel like defending the basic right to be taken seriously and treated with the same dignity as patients with any other disease. These narratives do not only affect medical care. They affect families, friendships, work, disability support, and social isolation. Patients are not protecting illness. They are protecting themselves from being abandoned by a system that too often turns unexplained biology into psychology. I invite you to read the full thread, because I do not think this is a fair defense of the article: x.com/manruipa/statu…

Hannah Spier, MD @hannahspierMD

2 days ago

One thing I have noticed about patients with diagnoses such as fibromyalgia, ME/CFS, and increasingly Long COVID is how often the conversation revolves around explaining why they cannot move forward. There’s an extraordinary effort devoted to protecting the illness narrative.

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@oxbits I get that Zeynep had her critics and some of them are right, but I actually appreciated her chiming in and think she raised some good and valid criticisms.

Listen, the solution here clearly is to get those newly sickened mice into a brain retraining program.

Spot on critique of the Wired piece.

Manuel Ruiz @manruipa

a day ago

‼️⚠️Please read this until the end. A widely shared article has presented a deeply misleading view of Long COVID, suggesting once again that cognitive behavioral therapy, exercise, and “mind-body” approaches may be the uncomfortable truth patients refuse to accept. This needs

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@SSSupervillain Ugh that’s so frustrating, I’m so sorry. 🫂

The fun part about being this sick is that you very quickly disabuse yourself of the notion that certain groups of people who are considered very smart by the rest of society are indeed very smart by default - doctors, researchers, journalists, college professors, etc. etc.

@JessicaGimeno Totally.

Funny that this article came out on a day where I’m literally sitting with an IV, tranq’d up on 27 diff meds infusing immunoglobulins at a snail’s pace so as to not freak out body in the hopes that my immune system will stop going haywire after years of chronic immune activation.

WIRED @WIRED

2 days ago

Six years since the height of the pandemic, the scientific community remains baffled by long Covid. But there might finally be a way forward for long Covid treatment—if only you were allowed to talk about it. wired.com/story/the-pain…

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@x3r0gx4 One of the few positives to come out of Stan Twitter.

Also, it should not go unnoticed that the recently announced Keytruda trial for LONG COVID is only happening because of the NIH’s intramural study into ME/CFS. So is ME trying to reheat LC’s nachos or is it the other way around?

Yr buskined mistress & yr warrior love @rhymeswithvery

a day ago

a brief intermission to note that A LOT of pwME are using spoons today to fight for pwLC against MSM propaganda while themselves constantly under attack from a LC patient subgroup who generate their own special flavor of anti-ME propaganda & hate.

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@bhanlon15 I’m tired of fighting for my life in the shower. Let me lie down and stretch my hammies instead.

A nice alternative to the #POTS shower chair.

𝕡𝕙𝕠𝕤𝕡𝕙𝕠𝕣 𝕘𝕝𝕠𝕨 @phosphor_glow

2 days ago

are you showering correctly?

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@sunsopeningband Dr. Nath finally got his hands on a checkpoint inhibitor! clinicaltrials.gov/study/NCT07388…

Expert consensus is a fact worth reporting. Expert disagreement is, too. Fringe dissent is not the equal of either. Creating "balance" is just distortion.

@LazarusLong13 That train is never late.

@virginiahughes Here you go since a *checks notes* deputy investigations editor can’t be arsed to investigate before promoting an article that’s really damaging to patients who are left languishing without treatments. pubmed.ncbi.nlm.nih.gov/?term=long+cov…

@annamv10 @rainbowjanelane Listen, he had a preconceived notion and he’s not gonna let leading experts on the topic he’s reporting on convince him otherwise.

“If I show this study to someone who doesn’t know anything about the topic being studied, they say it’s a garbage study.” WOW, what a fucking gotcha.

On brain retraining. Rinse. Repeat.