#MEcfs #LongCOVID #pwME #PVS

This is a very deft thread. A concise precis of our conversation on conservatism, capitalism, and disability Thank you @mecfsskeptic.bsky.social #MECFS #LongCovid @davetuller1.bsky.social

An absolutely stellar piece of writing…thank you Julia Doubleday! Not sure if I have it in me to watch this show as I feel as if I am living it in real life and it hits too close to home…we shall see! 😔 PS…perhaps this show merits a “trigger alert”! #COVIDisnotover #LongCOVID #MEcfs #pwME #PVS

Not taking Covid seriously enough, Maximising social harm, Cardiovascular complications, Occupational brain fog, and more open.substack.com/pub/johndupu...

Thank you Simon for carrying the “scientific torch” for this community. Your efforts are definitely needed and much appreciated. #longcovidisreal #pseudoscience #longCOVID

Brilliant ICanCME conference! Thank you to all involved! #ICanCMEconference2025 #LongCOVID #MEcfs #pwME

Bye bye political dynasty…welcome to the era of “by the people…for the people”! A phenomenal speech! www.youtube.com/watch?v=G1NY...

Amazing 1st day of ICanCME 2025 Conference. #ICanCMEconference2025

We've just launched the first large, site-less (home, direct to participant) randomized trial for treatment of #LongCovid, testing tirzepatide (a GLP-1 drug) vs placebo. Please help spread the word www.scripps.edu/news-and-eve...

Medscape report on the IACFS/ME conference that took place last week: "No Evidence Supports Using Graded Exercise for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome" www.medscape.com/viewarticle/... No mention of new data from new treatment trials here #MEcfs #CFS #PwME

Iwasaki doing “Iwasaki”…such a medical research rockstar! So grateful for all the work that she and her colleagues and collaborators continue to do!

Recent data showing that re-infections increase the risk of Long COVID and serious complications in children. 🚩Profound fatigue, PEM, and cognitive challenges www.medscape.com/viewarticle/...

THIS…the COVID pandemic is not over! thetyee.ca/Analysis/202...

Earlier this week, the CBC broadcast an interview with Gill Deacon, discussing her Long COVID recovery using brain retraining. They didn't tell you the specific brain retraining program, the Lightning Process, has been accused of exploiting patients. simonspichak.beehiiv.com/p/cbc-flagsh... 1/n

Happy to share that I've been selected for the @nationalpress.bsky.social Rare Disease Reporting Fellowship. nationalpress.org/newsfeed/npf...

Ms. Deacon's '15 minutes of fame' is over. What she is sharing is unscientific and dangerous rhetoric that can be extremely harmful to the Long COVID, ME/CFS community. As a Long COVID, ME patient I find it insulting and discouraging that the CBC keeps focusing on Ms. Deacon's story!

A beautiful moving piece…”Shattered, But not gone”. #COVIDisnotover #longCOVID #pandemicisnotover dandeliontruths.substack.com/p/shattered-...

CBC is platforming unproven pseudoscientific brain retraining programs for #LongCOVID. In reality, some people recover others do not, no matter what they try. This approach lays the blame on patients who don't get better because they're not trying hard enough.

Thoroughly disappointed in this LC media coverage that aired Oct 26, 2025 on CBC Canada completely misrepresents this life altering illness…extremely harmful. Need community advocates to share far and wide & also reach out to CBC. 1/2 #LCisreal #MEcfs #pwME m.youtube.com/watch?v=DXri...

This piece for @thesicktimes.org about people with Long COVID receiving diagnoses of funcitonal neurological disorder... thesicktimes.org/2025/09/26/l...

Timely @TheLancet paper about #Longcovidkids, showing that risk of developing #LongCOVID effectively doubles in kids after their second infection. Now do third, fourth, nth infections… “We knew how to protect you, and we didn’t” 🤔 sound familiar? www.thelancet.com/journals/lan...

Working on a story for @thesicktimes.org about the quality, utility, and risks of exercise trials in Long COVID (and how often they mention/measure PEM). Looking to speak with anyone that's participated in these trials and experienced PEM/other negative side effects as a result.

These folks need to go back to school and take “UNBIASED RESEARCH 101” with a prerequisite of “HIPPOCRATIC OATH 101”. Thank you David Tuller for calling out such harmful “pseudoscience” rhetoric time and time again! #LONGCOVID #MEcfs #pwME #PEM www.facebook.com/share/1CTyMK...

A huge thank you to Putrino, Proal, Peluso and Iwasaki! SPEAR (SPIKE PROTEIN ELIMINATION AND RECOVERY) STUDY GROUP TO ASSESS THE EFFECTS OF MONOCLONAL ANTIBODY THERAPY FOR LONG COVID AND COVID-19 POST-VACCINATION SYNDROME #longCOVID #PVS #MEcfs #pwME investors.invivyd.com/news-release...

I was asked about my opinion on this recent study into #MECFS and I wanted to share here as well. First and foremost, sincere congratulations to the research team for some stellar work. I will never stop cheering for groups that are working to uncover the biological 1/

So grateful to Dr. Putrino and his team @ CoRE for this amazing initiative which I believe to be an historic event in medicine. This is what gives me hope! #LongCOVID #MEcfs #pwME

According to his family, donations in Derrick’s memory can be made to the Long Covid Action Project here: www.gofundme.com/f/lcap-long-... #LongCovid

"What do we know about the Covid-19 virus 5 years on?" "The growing body of research suggesting that for several months after a Covid infection, people become more vulnerable to other infections and there can be lingering effects on the heart, cardiovascular system and the brain." #COVIDisNotOVER

“If this finding holds up with further research, clinicians could use blood tests to screen patients for potential treatment with rapamycin, which ‘would be a huge advance,’ said… trial participant @chromatowski.bsky.social, a member of PLRC” #LongCovid #SevereME thesicktimes.org/2025/07/29/c...

Spotted today… Mount Sinai Hospital Toronto please do better and rethink your messaging…follow the science and keep air safe for everyone…(vulnerable patients, staff and visitors). Masking should be promoted in healthcare settings and should be mandatory. #maskingsaveslives #covidisnotover #MEcfs

ABC Net: 'Living with Chronic Fatigue Syndrome' 'The world's biggest genetic study on Myalgic Encephalomyelitis has found solid proof that your genes can influence whether you develop this debilitating illness, that's been ignored & dismissed for decades' #DecodeME www.abc.net.au/listen/progr...

DecodeME study explained! www.facebook.com/share/p/14Mx...

Here's the summary of the article from Simon Source: The Sick Times Share share share, this is ridiculous. #covid #covid19 #longcovid #longcovidawareness #me #cfs #health #world #worldwide #science #medical #med #mask #masking #britishcolumbiacanada #canada www.instagram.com/p/DL5VNUVMLp...

June 22, 2025 This video “COVID FOR DOCTORS” by Dr. Nancy Malek is absolutely brilliant and informative…I have listened to and watched many videos on all things COVID related but thus far this one really goes above and beyond…so well done and informative! #covidisnotover youtu.be/GPUTTjjdT4A

This needs to be circulated far & wide! So grateful for all the ethical medical researchers that continue to call out such harmful non-science based approaches…those folks need to familiarize themselves with the copious amounts of published research on this topic! #longcovid #MEcfs

This is amazing news for the LC and PVS community. A huge thanks to our medical research heroes…you know who you are! #LongCOVID #PVS #pwME #pwMCAS www.facebook.com/share/p/15Zh...

So grateful for advocates like David Tuller that continue to fight the good fight against such nefarious ego driven forces based on extremely questionable pseudoscience…deliberately ignoring peer reviewed research that clearly counters these claims does not make these people right! #MEcfs #pwME

Clarity is everything! Thank you @meassociation.bsky.social for all the brilliant work that you do in supporting these communities. #pwME #MEcfs #LongCOVID

@putrinolab.bsky.social I am so sorry that you and others that are working tirelessly to focus on the much needed evidence based science research are having to also expend unnecessary resources on calling out such harmful and previously disproven non-science based nonsense…so shameful!

So well said! May 18, 2025 By Violet Affleck #covidisnotover #longCOVID #climatecrisis yaleglobalhealthreview.com/2025/05/18/a...

What an absolute waste of precious resources…flogging a dead horse does not bring it back to life! #MEcfs

Well this makes a whole lot of sense… #longCOVID #ME/CFS journals.asm.org/doi/10.1128/...

An extremely well written piece…and a poignant line that struck me personally… “…the pandemic didn’t end—it just got rebranded.” #COVIDisnotover #LongCOVID whn.global/stuck-in-the...

These folks never cease to inspire hope! Always grateful! #LongCOVID #ME/CFS #pwME #IACCs www.youtube.com/live/ActMM5q...

The resistance is taking root on both sides of the border. If you want to see how grassroots activism is fighting back against the rise of fascism join my substack feed. Thanks to the many Americans who are amplifying my voice of resistance. charlieangus.substack.com/p/resistance...

April 14, 2025 Great visuals and audio explaining the impact of a COVID infection on the brain. #COVIDisnotover #protectyourbrain www.facebook.com/share/r/15uS...

WHO estimates that six in 100 people, including children, with COVID-19 will develop Long COVID. In the U.S., one study estimates that 11 million people live with Long COVID. Symptoms can vary from mild to devastating and can persist for months or years. There's no cure. www.who.int/news-room/fa...

Aren't you tired of being sick and tired? COVID-19 isn't just another cold. It can cause lasting harm even without symptoms. We have the power to break this cycle. Wearing a high-quality mask in public drastically reduces infections, protecting you and your community.

Featuring Dr. Akiko Iwasaki, Dr. David Putrino and more. #LongCOVID #YalePublicHealth ysph.yale.edu/event/long-c...

Dr. Akiko Iwasaki spreading the word…thank you! #LongCOVID #MEcfs #savescience #handsoffscience youtu.be/ilIOh4cZiNI