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When an Australian ME/CFS study of an exercise intervention failed to find enough participants, the investigators decided to blame patient advicates instead of questioning their assumptions: virology.ws/2025/09/08/t...

@meactnet.bsky.social @exceedhergrasp1.bsky.social I’d like to bring to your attention there is a group of Neurodiversity drs & podcasters promoting PEM as a characteristic of autism & ND burnout (with zero mention of ME). Please reach out to them. www.divergentpod.com/blog/ep-121

Gifts for M.E. is a charity to provide useful items to ME/CFS patients in the United States launching in 2026 www.giftsforme.org Image from September AMMES newsletter #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Beginning the Community Symposium for ME/CFS at Stanford. Will cover it, as this part is open to the public. 🧪 Housekeeping stuff going on right now. If you want to join, you can find it here: stanford.zoom.us/webinar/regi...

Sometimes you just need some #PedroPascal in your #LomgCovid #MECFS research. More #PedroPascalPapers coming soon!

When #PEM hits you and your ME buddies hard “I was dying earlier today. Then I died, now I’m dead” #pwME #MECFS #LongCovid

When #PEM hits you and your ME buddies hard “I was dying earlier today. Then I died, now I’m dead” #pwME #MECFS #LongCovid

ME Research UK @meresearchuk.bsky.social Read more about the findings of a study on oxidative stress in ME/CFS and long COVID and whether this could influence future treatment: bit.ly/3UD17aJ #mecfs #longcovid

Story time with Pedro Pascal: #SevereME & the #GreatestMEdicalScandal The story of #MyalgicEncephalomyelitis (Tap full screen for lyrics & music) References: medium.com/@mayalindema...

Story time with Pedro Pascal: #SevereME & the #GreatestMEdicalScandal The story of #MyalgicEncephalomyelitis (Tap full screen for lyrics & music) References: medium.com/@mayalindema...

Some #PedroPascalPapers to brighten up #SevereME week

Some #PedroPascalPapers to brighten up #SevereME week

@meactionuk.bsky.social @meactnet.bsky.social please boost on other platforms. We are scrambling for lawyers to get the sister out as the top priority. I am speaking with national print media this morning.

'POTS Practitioners: Dr. Jen Curtin on the RTHM approach to improving care for complex patients' 'Dr. Jennifer Curtin is using the latest technologies to improve patient care and offerings. She was a ME/CFS patient herself when she went to medical school..' the-potscast.castos.com/episodes/pot...

Ever wondered about functional autoantibodies? Well, you are in luck...check out this webinar opportunity from @solveme.bsky.social happening on this Thursday!

No politics, I promise. None of my rants, I promise. Take a look at our new episode of Unraveled: Understanding Complex Illness. This is a long and fun conversation with Dr. Tania Dempsey where we focus on the confusing world of Tick Borne Infections. youtu.be/_1mEDBroU9Y

So sickening. I am ashamed to call myself a Jew. Israel has joined the world of darkness, right up there with the other fascistic evil states. So sad and shocking.

Announcement!! 1. Clinics are shutting down, but patients w/ MECFS & Long Covid need to regain function. Resources are decreasing, while the need grows! We are thrilled to announce the launch of a full-service coaching and consulting program tailored for patients with ME/LC

✅️ Accelerate research and care for ME/CFS and Long COVID Our work has already made an impact on the lives of our participants, both in terms of quality of life improvements and developing a community where patients and their caregivers are listened to and empowered. www.zeffy.com/en-US/fundra...

I did my safeguarding level 3 mandatory training this week on FII (Fabricated or induced illness - seen as a form of child abuse) and PP (perplexing presentations) i.e. symptoms that don’t make sense to paediatricians. Look at the symptoms that these ‘abusive’ parents may report.

Here’s an easier link! docs.google.com/forms/d/e/1F...

If the first link didn’t work- try this one docs.google.com/forms/d/e/1F...

Excellently done. #LongCOVID #NEISvoid

Potential study for those with pre-Covid #MECFS and cognitive impairment. They’re looking for feedback on the study design. Took me less than 3 mins to fill out. #pwME

Here’s an easier link! docs.google.com/forms/d/e/1F...

@renegaderesearch.bsky.social @remissionbiome.bsky.social @tessfalor.bsky.social @isabelrb.bsky.social

@renegaderesearch.bsky.social @remissionbiome.bsky.social @tessfalor.bsky.social @isabelrb.bsky.social

📣PwME(preCovid): I need your input on a study design. Please fill out this quick survey gformsapp.com/f/1elUnYTbc-... I’ve been working on this project for over a year and am so excited to share it with you @remissionbiome.bsky.social

Be part of a clinical trial investigating a device designed to assist cognitive function in Long COVID patients. For more information, contact [email protected].

To be clear, literally tucked into the food supplies. Hidden in the flour

Now dreaming of a conversation (and/or interview for us to also watch/participate) between @hankgreen.bsky.social and @virusesimmunity.bsky.social @putrinolab.bsky.social @ahandvanish.bsky.social @exceedhergrasp1.bsky.social Amy Proal from @polybiorf.bsky.social and other stellar researchers

Hello…doing some research now on the increasing viral impact on people as we went super global as a potential driver of immune disregulation. I’ve got some good leads on the current state of research but if there’s anyone who knows anything they think I should know, please let me know!!

It is so important to understand that will Covid may not have as high mortality, it continues to cause high morbidity.

Here are some great research articles viral impact and immunity. Second others recommendations of @exceedhergrasp1.bsky.social @virusesimmunity.bsky.social @putrinolab.bsky.social @openmedf.bsky.social @patientled.bsky.social

Some more Pedro Pascal as ME & LC research to get you through the week #PedroPascalPapers #MillionsMissing Who’s your daddy? (Sound on)

Some more Pedro Pascal as ME & LC research to get you through the week #PedroPascalPapers #MillionsMissing Who’s your daddy? (Sound on)

Your reminder that #MEAction has a ✨protest guide✨ for people with energy-limiting illnesses like #MECFS: #DisabilitySky #NEISvoid www.meactions.org/_files/ugd/b...

The way she refuses to be derailed and reiterates a handful of important messages is a masterclass in activism narrative.

Article in The Atlantic by Ed Yong | "Fatigue Can Shatter a Person" "Everyday tiredness is nothing like the depleting symptom that people with long COVID and ME/CFS experience.” Read here 👉 ow.ly/QpLh50W6hGL

The Princess of Bed-Hair 🎶 My rewrite of Fresh Prince of Bel-Air, but #POTS #POTSie #Spoonie #Dysautonomia #MECFS

The Princess of Bed-Hair 🎶 My rewrite of Fresh Prince of Bel-Air, but #POTS #POTSie #Spoonie #Dysautonomia #MECFS

#PedroPascalPapers ?! 😆🥹😍👏 I am already a huge fan. #MECFS #LongCovid

A little bit of #PedroPascalPapers to get you through the week. Making #MECFS & #LongCovid Research irresistible

Awesome interview by @mayalongcovid.bsky.social with @wearlumia.bsky.social 'Meet the PAC: Maya Lindemann' 'May is ME/CFS Awareness Month, so we are excited to feature Maya's story!' lumiahealth.com/blogs/news/m...

A little bit of #PedroPascalPapers to get you through the week. Making #MECFS & #LongCovid Research irresistible

Such an honor & privilege to represent the chronic illness community ❤️🌺

Meet Maya: After a 2020 COVID infection, @mayalongcovid.bsky.social went from diver & school nurse to bed-bound with ME/CFS, POTS & MCAS. Now, she serves on Lumia’s PAC, bringing the chronic illness community’s voice forward. Read her story: tinyurl.com/wearlumia #longcovid #pots #wearlumia #pwME

there's a moderation list for that! BPS fanatics have harmed enough pwME, I will not let them use my spoons with their BS if I can help it. bsky.app/profile/long...