Check out the latest from @juliametraux.bsky.social of @motherjones.com. "Emily Lim Rogers looks at the labor it takes simply to exist while sick in her new book Sick Work: Exhaustion, Labor, and Invisible Illness, through the lens of ME/CFS. We spoke about the history of the condition..."

Mother Jones@motherjones.com · 12h ago

“Fatigue is this term that’s so banal and non-exceptional. We accept it as completely mundane and something that everyone should be: fatigued.”

"I’ve seen countless specialists for Long COVID and my seizures. While a few have helped guide my care, most have gaslit me...I feel like I have to be “pleasant” just to be taken seriously." A new essay by Kelly Sealey, the latest in our #ColorOfLongCOVID series. thesicktimes.org/2026/08/28/w...

“We’re going to stop the gaslighting right now”: How I’m fighting back as a Black woman with Long COVID - The Sick Times

Despite prior experience working in public health, I’ve faced challenges getting care for Long COVID and chronic seizures.

thesicktimes.org

MEAction Scientific Director Jaime Seltzer @exceedhergrasp1.bsky.social speaks at the special Severe ME Coffee with a Clinician hosted by our friends at @batemanhornecenter.bsky.social along w/ @openmedf.bsky.social & @solveme.bsky.social . See the full video: youtu.be/HlfbfyRl3K8?...

🧵 of highlighted #MECFS and #LongCovid research papers discussed in the last week on the Science for ME forum. 24 - 30 Aug 2026

Our latest News in Brief summary has headlines and links to further reading about ME/CFS, Long Covid, and related news for the week of August 24 - 30. s4me.info/threads/news... #MEcfs #PwME #LongCovid #PwLC

1) 🇳🇱 In the Netherlands, ME/CFS patient and advocate Anil Van Der Zee was appointed Knight in the Order of Orange-Nassau. It's an recognition of his outstanding contribution to society, a very high honour.

As we come to the end of Severe ME Awareness month, we want to share so much love to each member of our community - whether you can be online or whether we know your story - we hold you in love. We fight for you. We show up over and over determined to create change. #PwME #SevereME

Congratulations to @anilvanderzee.bsky.social for his well-deserved Knight of the Order of Orange-Nassau award for his #PAIS voluntary work (for ME/CFS, Long Covid, QVFS, etc)​👏 All the more remarkable given the extreme circumstances he has to deal with translate.google.com/translate?sl... #MEcfs

#MEAction is excited to announce we are partnering with the Writers Guild Initiative (WGI) again to offer creative writing workshops for people with ME and Long COVID. Deadline to apply: Sept. 8th. 30 slots available. DETAILS: https://ow.ly/nTJb50ZGCFF Thank you, WGI! #PwME #PwLC

You are invited to the MEAction Artist Salon on Nov. 22nd at 3 pm ET. https://ow.ly/HVzo50ZG6Ga The salon is a creative, virtual gathering where everyone in our community is invited to attend live and share their art with the wider community. All types of artwork are welcome! #pwME

Calling all constituents in West Virginia and Maine - WE NEED YOUR HELP! The Senate Labor-HHS Appropriations Subcommittee is expected to discuss including $50 million in appropriations for the ME/CFS Research Roadmap in upcoming weeks! Toolkit: ow.ly/J6TT50ZFRjx #MyalgicEncephalomyelitis

We are sharing a few samples from the amazing Writers Gallery that is part of our Severe ME Artists Project! All writings available in our still gallery to be read: www.meaction.net/severe-me-ar... Or read aloud at our community watch party (thanks @corywysz.bsky.social): youtu.be/deJLdcQr3W4?...

Todd Davenports PhD’s thread on ME/CFS vs Long Covid threadreaderapp.com/thread/20916... #MEcfs #LongCovid #PwME @sunsopeningband.bsky.social

Thread by @sunsopeningband on Thread Reader App

@sunsopeningband: Given the online discourse of the past couple of days, I can see that it's time for more #ThoughtsFromthePEZDispenser. PEM has longstanding consensus case definitions. It's always be...

threadreaderapp.com

Study closes in September! Please share with your networks. I'm hoping to get at least 50 more responses :)

victoria@vashetc.blacksky.app · 2w ago

If you have ME/CFS, or treat someone who does, consider contributing to a research study that I'm conducting. The research study aims to better understand how ME/CFS impacts people and how we can improve the ways in which we show up for people with this disease. Learn more at restandmecfs.com.

Thanks to Matthew, Alexander, and Denise Lopez-Majano for their insightful statements on being a family living with ME/CFS.

Miles W. Griffis@mileswgriffis.bsky.social · 2w ago

“ME is like being in a raging storm while caught in the open ocean. You can’t think, you can’t breathe, and you are constantly thrown about by circumstances out of your control.” thesicktimes.org/2026/08/21/h...

#MedicaidMonday Update! We had a productive meeting Thursday with an executive at California’s Medicaid agency. Staff Ben & Therese and leaders of MEAction Pacific Art & Jules made their case for why people with ME, Long COVID, & other IACCs should get exemption from Medicaid work requirements.

1) A short but powerful blog by Anil van der Zee: "Not an Advocate. Not Your Silver Lining Porn. Just Desperation." 👇

Not an Advocate. Not Your Silver Lining Porn. Just Desperation. - Anil van der Zee

I'm not a patient advocate. I'm not an activist. I'm just a patient that shares out of sheer desperation as much about my disease, or rather the whole shit show circus surrounding it, so I can hopefully, one day, return to a more normal life. While raising awareness for ME also keeps me busy, I

anilvanderzee.com

🧵 of highlighted #MECFS and #LongCovid research papers discussed in the last week on the Science for ME forum. 17 - 23 Aug 2026

Our latest News in Brief summary has headlines and links to further reading about ME/CFS, Long Covid, and related news for the week of August 17 - 23. s4me.info/threads/news... #MEcfs #PwME #LongCovid #PwLC

Join us TONGIHT for a community watch party of the Severe ME Artists Project on Aug 22 at 3 pm PT: https://ow.ly/ZAfH50ZC1yP CoRy Wysz 💤 walks us through the amazing art submitted for this project including reading written works. Project home: https://ow.ly/Jg0g50ZC1yQ #SevereME

Mark your calendar for RECOVER-TLC's 3rd annual workshop on November 4-5, 2026. You can attend in person at The Bethesdan Hotel in Bethesda, Md., or virtually via Zoom. Registration will open in late September. Please direct any questions to egeerling@fnih.org or eroy@fnih.org. #LongCovid #pwME

You're invited to our community watch party for the Severe ME Artists Project this Saturday, Aug 22, at 3 pm PT! https://ow.ly/PjQN50ZC12c Our amazing volunteer CoRy Wysz 💤 walks us through the powerful art submitted for this project including reading the written works! #SevereME

Check out this cool series by our volunteer @corywysz.bsky.social- a month in the life of chronic illness! #MyalgicEncephalomyelitis #SevereME

CoRy Wysz 💤@corywysz.bsky.social · 2w ago

8/19/2026 ‐ #cwyszzebralife Welcome to a month in the life of chronic illness: the highs, the lows, doctor visits in between. If you thought we were done with Quest Result, do you even realize what is going on inside me? Please, anyone one [an echo]? #chronicillnessiswar #pwme #rthm #meaction

People with severe ME/CFS are too often left out of conversations about their own illness. Jaime Seltzer of @meactnet.bsky.social shares how advocacy, art and peer support can help amplify their voices, and remind them they are still part of this community. Watch here: https://youtu.be/HlfbfyRl3K8

🔬Help advance #MECFS and #LongCOVID research by joining OMF’s StudyME, a free global participant registry that connects you with researchers conducting studies in these areas. 👉 Sign up today: https://ow.ly/5BQZ50Zz5Xm Already part of StudyME? Please share this post so we can reach more people. 💙

The Senate is expected to discuss funding for #MECFS and #longcovid research in its appropriations discussions in the upcoming weeks. The Sick Times reported on the work that #MEAction, #LCCampaign and #NotJustFatigue are doing to make this happen. thesicktimes.org/2026/08/18/c...

Congress’s 2027 budget could include new funding for Long COVID and ME - The Sick Times

Advocates are calling on senators and representatives to include the ME/CFS Research Roadmap and new Long COVID funding in the fiscal year 2027 budget as legislators debate appropriations bills in the...

thesicktimes.org

You are invited the the Severe ME Artists Project Gallery! We have such a unique and powerful selection of work. What we have included here is just a small random sample of what you will find chosen at random. www.meaction.net/severe-me-ar... #pwME #SevereME #art #SevereMECFS

MERUK discusses the ways ME/CFS differs between patients - heterogeneity - and the difficulties this presents for research. tinyurl.com/m5bew9ju

1) The Science for ME forum has published a factsheet on the "Management of severe and very severe ME/CFS." It was written by Professor Emeritus Jonathan Edwards and various forum members. Looks like a useful reference for ME/CFS patients and their carers. A brief summary 👇