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@JackHadfield14 @manruipa Agree with you here. If we find COVID indicators like the spike protein in recovered subjects almost as much as in Long Covid folks, there’s very likely to be chronified and now independent downstream issues.

It could be relevant in all those systems you just mentioned. But they can also exist without persistent covid as the driver. So we shouldn’t assume it’s the case, we should prove it is Saying that though, I’m of course in favour of testing the theory by trying to treat it, so I’m not against any covid persistence based clinical trials and I think it’s definitely an issue for a subgroup. Just unsure if it’s the root cause of almost everyone, or if many people now have a self sustained disease that will continue with or without Covid persistence

Long COVID research is moving toward a clearer picture: this may not be one illness with one cause. It may be several overlapping problems involving the immune system, blood vessels, nerves, clotting, muscles, sleep, and viral remnants.

Study of 97 million people found COVID infection led to a 49% increased risk of new-onset autoimmune-related diseases, esp vascular & connective tissue issues. pubmed.ncbi.nlm.nih.gov/41452424/ #LongCovid

Beautiful and emotional message on national television during Knappe Koppen (Bright Minds) from two young #LongCovid patients and their parents to Dr. @RobWust, thanking him for his incredible work to uncover the biological cause of PEM in Long Covid (or Long Covid ME) & #pwME.

Psychiatry has caused a lot of delays and damage in the field of #MECFS. A lot of work needs to be done to undo harm from theories such as patients excessively resting, being afraid to exercise, or perpetuating their illness. Dr Nina Muirhead, interview in The Times (2020)

‼️ BURIED ALIVE WITH M.E.‼️ For ME Awareness Month I made a severe ME body‑bag “dance” film about death within the ME community. youtu.be/XhrAhGkrGuQ?is… I also joined the online expo ME Kills by A Quiet Storm, which goes live on May 12th, 1/ #pwme #myalgicE #millionsmissing

🎥 ICYMI: Watch "From Mystery to Measurable: The Science Behind the New #MECFS Blood Test" and learn how a 96% accurate test could transform diagnosis + treatment. Watch: youtu.be/DqRAsy_vqJo #MEAwarenessHour

ICYMI: Watch "The Discovery of Target Antigens for Dysfunctional T Cells in #MECFS & #LongCOVID" to learn how this work could produce new disease biomarkers & suggest new treatments for patient subgroups. 🎥 youtu.be/-g3Zz8DwK_c #MEAwarenessHour

Im Vorjahr hat unsere Recherche gezeigt: PVA-Gutachter erkennen die Diagnosen ME/CFS und Post-Covid sehr oft nicht an. Jetzt liegen ORF, DOSSIER und APA geheime Schulungs-Unterlagen für Gutachter vor, die Hinweise liefern, dass das so gewollt sein könnte. orf.at/stories/342812…

Studie: Marker für vaskulär-endotheliale und inflammatorische Prozesse korrelierten mit kognitiven Problemen bei Long Covid. PEM wurde in der Kohorte häufig angegeben. Leider noch kein Biomarker/Therapieansatz, passt aber zu vorhandenen Hypothesen. sciencedirect.com/science/articl…

@liamsLCjourney That’s lovely and reassuring to hear! Following!

@TLDnoR Totally agree. And this is part of the hypothesis I want to "prove" with the analysis (and in the brain retraining breakdown as well): that certain types of people are more motivated to post their stories than others!

Yesterday, I stepped down as CEO of my company. Not because I wanted to, but because in mid-January, I became bedbound with Stage 4 ME. For the past three months, I've watched my team run the company I built while I just lay here, unable to live the high-impact life I was used to. At first, I vowed to get better so I could return to even part-time work. But as I gradually and inconsistently improved over months, I became radicalized for a different cause: Not a single person deserves to live like this. But yet we do, and and no one will save us but ourselves. So today, I begin a new role: I will dedicate the next year of my life - 18 waking hours a day - entirely to this community. I suppose it's time I introduce myself (I've also attached a photo of me, in bed, feeling much worse than I look): - Out of college, I co-founded a magazine that took me around the world doing sports journalism and broadcasting. - Over the past 7 years, I have assembled the greatest team to build and run a sports tech company from the ground up - In the early days of the pandemic, I co-founded and led @getusppe, a team of hundreds, to deliver 17 million+ pieces of PPE to healthcare workers. - I specialize in acting with urgency, seeing gaps, and connecting people to fill them. And most of all, in uniting and building community. I have accomplished a ton in my 35 years on earth before I got sick, but Long COVID and ME are, by an order of magnitude, the biggest challenges I have faced. But when there are so many gaps, there's simply no time to complain. We must roll our compression-wear up and get to work. So here is what I have planned: - Guides and essays: - The Severe PEM Crash Survival Guide - What's the Deal With Brain Retraining? - So You Have Long COVID, Now What? - ...and so many more! - Treatment Experience Surveys to fill the gap between random Reddit anecdotes and slow clinical trials (GLP-1 data released in two weeks) - The first comprehensive AI analysis of all publicly posted recovery stories to look for trends and correlations - Helping a fellow patient and test expert publish the first interactive and comprehensive testing guide for ME - Helping a fellow patient increase the visibility of Stage 4/5 patients as the faces of ME - Creating a network of the highest agency patients working on these conditions to mutually share information, support, and unblock each other - Creating Long COVID and ME microgrants to fund people to work on small but impactful projects - Incubating and raising funding for founders who want to start non-profits and companies (let five more Amaticas flourish!) - Overall, pouring my heart out to support every single person who is interested in working for the betterment of this community (especially where others are far better than me, like science and advocacy!) No one is going to do this work for us. Not doctors, researchers, or government. This must be patient-led. Want to join the movement? Send me a DM, and let's figure out what we can do together. Time to get to work.

NJF are doing the lords work! Follow, share and support folks!

Part 3/3 “It’s just a system that I can’t wrap my head around the impact that that has on so many, so many people.” One illness. So many people holding their breath. This is why awareness isn’t enough. We need research, resources, and real support systems for every person in that room. #MEcfs #severeMEcfs #notjustfatigue #MEawareness #chronicillness

@njfatigue Yall are doing such important work, deserves way more followers on here as well! Thank you!

This year, we're taking it to the Hill - IN PERSON. We've set up meetings with constituents and congressional staffers to advocate for funding of the ME/CFS RESEARCH ROADMAP.

“She actually asked me a couple of times, you know, am I going to die? She felt so unwell.” Isla is 10 and developed #MECFS after a COVID infection. She is 95% housebound and just wants to “have fun and do things with her friends”. From BBC Lifeline: Action for ME

@davidtuller1 @AnilvanderZee Bump! Fund this man everyone, he more t deserves it

The post below has been seen by 12,000+ people. So far, Berkeley's current crowdfunding campaign has received 356 donations. If you'd like to donate now, here's the link: crowdfund.berkeley.edu/project/49720

The only people whose brains are stuck in defense mode are these shrinks who can't square the extant scientific literature and lived experience with their personal and professional biases. Classic ego defense. Freud would recognize it instantly. Fitting.

Chengdu University researchers found PEM may arise when exertion sparks a loop of poor mitochondrial energy, immune activation, and brain inflammation, turning mild effort into lasting fatigue and brain fog. frontiersin.org/journals/immun…