mswalker

@Invivyd - I’m ready to call it. This drug is incredible. Long Haulers need it. Just a couple of weeks along, I’m seeing what others w/ Long COVID report. These antibodies are powerful- WE NEED A TRIAL!! @polybioRF? My nightmare began in Jan ‘24. Today I feel Perfect 🥳

@AlbaDocherty Pete Stauber is a deplorable lying piece of shit. He also cheats at hockey: petestaubercheatsathockey.com Signed, a Minnesotan

"I was connected with Dr Bruce Patterson, who diagnosed me with Long COVID. I quickly began his protocol... I truly believe that this diagnosis and treatment saved my life." -Congressman Pete Stauber

@HarrySpoelstra @fmeeus1

@mswalker @fmeeus1 Stop being so rude! No, I didn't! The numbers and more come from a solid international meta-analysis in rudimentary preprint preparation that I already had the unique opportunity to discuss! Bad luck for you! 🤣

Longcovid of vaccinatie schade ?

@HarrySpoelstra @fmeeus1

You created a statistic. I'm asking where you got this number, you're having a hard time admitting that you just made it up. It might be worth reflecting on why you would do this. Are you comfortable with completely fabricated statistics? I'm not. It's ok to set your ego aside and retract this portion of your statement (which would be the appropriate thing to do).

@mswalker @fmeeus1 Learn to read and understand, real PVS is sad indeed, but very rare! Stop your unfounded, mostly anecdotal based, attacks! LC is the bigger, much bigger problem, and vaccine are a safe and valuable possibility to reduce these LC numbers!

@HarrySpoelstra @fmeeus1 You're seriously citing a source of "prevalence unknown" to justify the 1:1,000 statistic that you created out of thin air?

One example to counter your Ignorance: Here a Yale study of 42 PVS cases found symptoms (e.g., fatigue, brain fog) similar to long COVID, but prevalence is unknown; ~36% had detectable spike protein persisting, but this was also seen in ~33% of long COVID. Some analyses suggest "long vax" may be misattributed long COVID in undiagnosed prior infections. Bottom line: - LC is common! - Real PVS is very rare! Both are very sad and need help, but don't exaggerate PVS numbers! LC is a far bigger health problem! news.yale.edu/2025/02/19/imm…

@HarrySpoelstra @fmeeus1 Lol - what a joke. You make up a statistic out of thin air, are unable to cite any source for your claim and then make fun of a sick patient population? This how you operate? Just vomit garbage & then double down?

@mswalker @fmeeus1 Bad luck for you, numbers are a conservative science estimation and correct. PVS is extremely rare, as science has learned us! Go shame yourself for your ignorance!😀

@HarrySpoelstra @fmeeus1 Why are you just making shit up? Disgraceful. Dishonest. Shame on you. These numbers are absolutely not known because PVS is basically unstudied.

@fmeeus1 Long COVID dwarfs long vax in prevalence by at least 1000 to 1, making infection the far greater risk, but sadly the world is full of stupid people!

I’m sure you feel like you get criticized, no matter what you do, but why would you exclude Post Vaccine Syndrome? We seem to have the same umbrella of symptoms as COVID/virus Long Haulers, but we have *even less* recognition 😩🫠 It seriously really sucks- eligible for zero trials, ~100% of doctors ignore (or mock) our situation. It’s incredibly isolating. At least from your group, I don’t think it’s intentional, but the more you can highlight LC+PVS in this type of thing, the more it legitimizes our existence.

Please fill out if you have a chance!

I don’t dispute any of that. But, anyone who went to the ICU for Covid had a certain specific severe respiratory experience & that is not representative of the more typical LC patient profile. I think it takes less effort for them to locate/identify these post-ICU patients & so that makes them appealing subjects. It’s much more complicated to screen from the typical LC pool, especially if they’re wanting PCR evidence or similar timelines/etc.

@mswalker @JackHadfield14 COVID causes silent HIV like organ damage

A study found a small set of molecules in blood that can separate people with Long COVID from recovered patients 1 year after severe infection. Using machine learning on metabolomics data, researchers identified 9 molecules linked to energy problems in the body.

This is kinda my point, I can’t comprehend considering VAD & yet worrying about the long term consequences of a possible treatment? People take this drug for arthritis & alopecia, it’s safe enough for those indications & currently studied in LC. reddit.com/r/covidlonghau… reddit.com/r/covidlonghau…

@mswalker Thanks . Doctor is not agreeing to baricitinib. Getting drugs is not the problem as I'm in India. But I recently read about baricitinib causes brain lesions

Felt good in the morning despite a night of crying. Was happy I could walk around the house and lie down and listen to music. And then I tried typing an article on the phone and then crashed. Nausea and difficult breathing. Why is my cognitive function so poor :(

@DrMakaryFDA Now do Japan’s Covid antiviral, Xocova (Ensitrelvir) 👍

FDA is moving with unprecedented agility. Today we approved a multiple myeloma drug just 55 days after the application was filed. And last week’s approval (a major leap forward) was approved in 44 days. If a trial result shows immediate promise for many Americans, why wait?

@elle_carnitine The distinction between Covid-onset & mono/flu/etc-onset fatigue conditions may be important to track. The symptoms certainly SEEM similar, but underlying biology may significantly differ. Have you read this recent thread?

I find that, as the “LC has nothing in common with ME” crowd has gotten louder, I’ve veered away from talking about my LC, and started talking more and more about my ME. I now say things like “COVID triggered my ME”, and I hate it. But…

I have a friend who has made great strides in their 25 year cigarette habbit & (more recent) alcohol use disorder with a GLP1. It hasn't been a "lightswitch" type of solution, but has tipped the scales toward success. It's been pretty rough on their ability to eat and they have noticed the emotional bluntness (with some dismay). For some patients, they would consider this tradeoff worthwhile if they're desperate for help with addiction.

@atranscendedman @ConversationUS This is on my mind a lot. There is no data out there.

A patient of mine tried to quit smoking for over a decade. After starting a GLP-1 drug for diabetes, he simply lost interest in cigarettes. No patch. No quit date. I wrote about GLP-1 drugs and addiction for @ConversationUS theconversation.com/glp-1-drugs-ma…

“no access to off-label treatments even in the most desperate cases.” ^^ this is the part that I find most unacceptable! We may not have a “silver bullet cure” but there are treatments that can help many with post-viral sequela live a more comfortable existence (or maybe prevent further deterioration. Patients are having to battle for basic care.

J’ai 25 ans, j’ai l’impression d’être morte à 21 ans. Etudes stoppées nettes, alitée, maltraitance médicale, pas de prise en charge digne de ce nom, aucun suivi de l’actualité médicale internationale, pas de traitements disponibles hors nomenclature même aux cas les plus désespérés.

😵‍💫 Connaissez-vous l'encéphalomyélite myalgique ? Cette maladie généralement post-infectieuse, parfois résumée en "fatigue chronique", a explosé depuis le Covid. "Je n’avais plus aucun espoir, mais je tiens pour mon fils." Un fil ⤵️ @le_Parisien 1/10 leparisien.fr/societe/sante/…

I’ve been a big fan too! I ordered a ~$100 mat from Amaz*n, just to try it & now use it almost daily. My state is **fairly mild** Today, I’m out skiing with a class of 6th graders. When i get home, will red light! This is the one I’ve used. I just made sure it had 850nm. a.co/d/0excYe9Q Seems like it does something, so i keep using it.

Not sure what folks have read about Red Light Therapy but the panel I bought a couple weeks ago seems to really be helping my ME/CFS. Starting to reduce some of my meds.

“The same is likely to happen in AD, in which we will discover progression independent of amyloid deposition…” So, is amyloid deposition really THE triggering event? What “triggers” the amyloid deposits? health.harvard.edu/mind-and-mood/… And what might trigger MS? nature.com/articles/s4158… And what triggers Long Covid? 🤷‍♀️ It must be unknowable…

Published new concept of “Progression Independent of the Triggering Event” in Neurology Neuroimmunology & Neuroinflammation - shorturl.at/x4u5g. Was on cover. Multiple conditions cause CNS damage and trigger common mechanisms that identify common therapeutic approaches.

@JoannaWo4 @marinaflares I’ve seen MANY on Reddit from 2025.

@marinaflares I just haven’t seen anyone developing it in 2025 nor 2026

Has anyone been getting long COVID in 2025 and 2026? Feels like everyone who got it was in 2020 until 2023 maybe 2024… I haven’t seen anyone struggling in 2025

@tiredjuul I first read about this condition a few months back when I saw a story about an Australian woman who had this & was granted permission for assisted suicide. I also wondered if such aab testing might be relevant to some with LC. people.com/25-year-old-te…

Haven't seen this mentioned but it seems very applicable to a lot of us? Has anyone had Ganglionic AChRab, Serum tested