Effie Seiberg, writer @effies.bsky.social
Marianne Dhenin, journalist @mariannedhe.bsky.social
Amanda Finley, organizer and long COVID advocate @rubyslippahs.bsky.social
Sign up here: mobilize.us/s/4F4yfT
4/5
We're back!
Join us for a virtual No Kings rally focusing on anti-intellectualism and censorship. We have a stellar lineup of speakers. Want to participate but want to go out in person as well? Go for it! We start at 6:30 pm Central. You can register at the link below.
1/5
GOOD TO KNOW thank you for this key addendum!!!
NO NO NO YOU DON’T
GUYS LET ME PLEASE SPREAD THE GOSPEL OF FREE TAX USA
federal is free, state is $16, handles even my chaotic freelancer taxes just fine, same step-by-step “designed for normies” kind of interface as TurboTax but NOT EVIL
tell everyone you know
www.freetaxusa.com
AOC: They wanted to issue this statement as though we’re just going after these 30-year-old men on Medicaid playing video games in their basement, right? This was the narrative that we heard.
First of all, I think everyone should have healthcare in America, regardless of who you are
Two cats, litter mates, snuggled together on white bedding. On the left is tabby cat Joe, on the right is Frankie, with tabby stripes on his back and forehead and a white front with a Christmas tree shaped splotch on his nose. Their forearms are intertwined, their paws reaching towards the camera. #CatsOfBlueSky
Snuggle bros.
This International Women's Day, please remember that trans women are women. Full stop. No qualifiers.
Disabled people tried to warn you.
We said the “better off dead” narrative being weaponized against us would be used for other groups of people.
The fascists won’t ever stop. They see everyone else as less than. Expendable. Not worthy of life.
Its eugenics on a massive scale
Pillow Writers 2nd anthology is lying on a bed of clover with lots of purple flowers. Text above: “For how can I worry about tomorrow’s tomorrow when today’s sunshine is so beautiful?” From "To the Caterpillar" by Trish Loehrer.
For those of us in the US and Canada that just sprang forward, how are you?
For a moment, let's embrace the attitude of the caterpillar/butterfly from the poem in the Pillow Writers anthology. “For how can I worry about tomorrow’s tomorrow when today’s sunshine is so beautiful?”
Her trip to Ireland was ruined by this one question?? Gee, I wonder why…
Tessa Munt MP’s new blog highlights the case for change for people with #MECFS. Numbers have risen with COVID and #MECFS is now thought to cost the UK around £22 billion a year. £50M has been ring-fenced for MND research, so why not ME?
www.thereforme.uk/p/the-case-f...
An outline of a naked woman is embroidered on linen in the same bone white colour as the linen. She stands legs together, her right hand covering her groin, her left hand, palm up, extended slightly to her side. She looks to the right. Her entire body except for her belly is covered in intricate markings representing different neurological sensations. Her face is a mask of green lines, feathery grey lines cover her shoulders and chest. There is a thick band of intricate burgundy stitching around her waist. Her forearms and hands are covered in thick blue undulant lines. Her right leg has bands of burgundy along the muscles, with small dots around them. Her inner left leg has a thick line of blue running up it, with thin branches spreading towards her outer leg.
For this #InternationalWomensDay I’m sharing a symptomatology #embroidery, body map (2016), in which I stitched my #MECFS symptoms freehand over a few months. ME/CFS affects mostly women, and the symptoms are often ignored or not taken seriously because of medical misogyny.
#SciArt
Image of Bluesky account of ME/CFS Science
Changed our handle to mecfsscience.org, which is the domain name for our website.
(previous handle was mecfsskeptic.bsky.social)
Our latest News in Brief summary has headlines and links to further reading for ME/CFS, Long Covid, and related news for the week of Mar. 2 - 8:
Topics:
News, advocacy, articles
Coming events
Research news and commentary
Published research
www.s4me.info/threads/news...
#MEcfs #LongCovid
Shows a doctor on the edge of a forest trying to put out a small COVID fire. There is a large fire in the forest behind the doctor labeled "long Covid". A frightened deer runs out of the forest to escape the fire. The deer is labeled ME/CFS. The cartoon shows that while Covid is somewhat less prevalent (though still a dangerous threat), the huge problems of Long Covid and ME/CFS still loom.
March is Long COVID Awareness Month. Please offer support to your stricken friends. @thesicktimes.org @guitarmoog.bsky.social @exceedhergrasp1.bsky.social @chromatowski.bsky.social @emilyrj.bsky.social @thecovidinfoguy.bsky.social @davetuller1.bsky.social @mileswgriffis.bsky.social
and also there's no guarantee that people who qualify during the disability pathway will get their requirements waived either, an extra level of headscratching.
Sources KFF is a nonpartisan, non-profit organization that is a leading provider of health policy information. https://www.kff.org/medicaid/understanding-the-intersection-of-medicaid-and-work-an-update/ The Center for American Progress is an independent, nonpartisan policy institute. https://www.americanprogress.org/article/the-truth-about-the-one-big-beautiful-bill-acts-cuts-to-medicaid-and-medicare/ The Center for Health Care Strategies (CHCS) is a policy design and implementation partner devoted to improving outcomes for people enrolled in Medicaid. https://www.chcs.org/resource/a-summary-of-national-medicaid-work-requirements/
Sources:
KFF
www.kff.org/medicaid/und...
The Center for American Progress
www.americanprogress.org/article/the-...
CHCS
www.chcs.org/resource/a-s...
Before states start enforcing the new work rules, the HHS Secretary must issue guidance that will shape how states decide who counts as "medically frail." TAKE ACTION ON THIS NOW. Sign our letter to the HHS Secretary. The bill requires that the Secretary of Health and Human Services (HHS) provide implementation guidance to states by June 1, 2026, including definitions and clarifications of standards mentioned in the bill text. (CHCS) The full impact of these changes will depend on how CMS interprets, implements, and monitors these new requirements. Guidelines from HHS, along with a limited amount of implementation funding, will shape how states operationalize their policies. (CHCS)
Before states start enforcing the new work rules, the HHS Secretary must issue guidance that will shape how states decide who counts as "medically frail."
We have been busily preparing the next step & will share soon!
Take action now: www.meaction.net/freakin-frail
Changes are coming- a trillion dollars in benefits cut, at least 10.5 million people eliminated from Medicaid/CHIP, states will cut services, and and proof of work or exemption eligibility will be required. “Research shows that when federal funding for Medicaid decreases, states tend to cut optional benefits such as home- and community-based (HCBS) first”. AP “The OBBBA requires individuals to prove that they are working, engaging in community service, or receiving work training for at least 80 hours per month—or that they are enrolled in school part time—unless they qualify for an exemption…That includes at least more than 2.6 million adults with disabilities who don’t have SSI or SSDI and have difficulty working due to disability or illness.” AP OBBA stands for One Big Beautiful Bill Act passed by Congress in 2025.
Changes are coming- a trillion dollars in benefits cut, at least 10.5 million people eliminated from Medicaid/CHIP, states will cut services, and proof of work will be required.
#pwME #Medicaid #pwLC #Disability
A majority of people on Medicaid who self-identify as having a disability are not enrolled through the disability pathway. That means that the many people with Medicaid with a disability may be forced to work 80 hours per month or lose their Medicaid - which includes many people with ME/CFS and Long COVID. “Of Medicaid enrollees ages 19-64 with a disability, about one third (32%) receive disability income (SSI or SSDI) leaving nearly seven in ten (68%) adults on Medicaid with a disability who do not receive disability income.” KFF “In 2023, only 10.1% of Medicaid enrollees (roughly 9.5 million people) qualified for Medicaid through a disability-related pathway.” KFF
A majority of people on Medicaid who self-identify as having a disability are not enrolled through the disability pathway. That means that many disabled people on Medicaid with could be forced to work 80 hours per month or lose their Medicaid - which includes many people with ME/CFS and Long COVID.
Graphics all have black background with red accents and white writing. The #MEAction logo is in top corner. Graphic explaining upcoming Medicaid changes with mandatory work requirements. "Medicaid Facts. One of the upcoming changes to Medicaid is mandatory work requirements. While it is falsely made to sound simple- hey people with disabilities are excluded from that right? - in reality it will be anything but simple. Here are some very important facts to help understand the issues."
Thanks for joining in to learn more about Medicaid so we can prepare for upcoming changes!
One of the changes to Medicaid is mandatory work requirements. While it is falsely made to sound simple- hey people with disabilities are excluded from that right? - in reality it will be anything but simple.
Our latest News in Brief summary has headlines and links to further reading for #MECFS, #LongCovid, and related news for the week of Feb. 23 - Mar. 1:
Topics:
News, advocacy and articles
Coming events
Research news and commentary
& Published research
www.s4me.info/threads/news...
🧵 of highlighted #MECFS and #LongCovid research papers being discussed this week on the Science for ME forum.
23 Feb - 1 Mar 2026
![A call script for elected representatives: U.S. attack on Iran:
YOU: Hi, my name is [NAME]. I’m a constituent from [ZIP CODE].
YOU: I’m calling to demand [MOC/SENATOR] take urgent action after the United States joined Israel in launching strikes on Iran today.
YOU: The Trump administration has again taken military action without any specific Congressional authorization. President Trump has also confirmed that the U.S. has undertaken “major operations” in Iran and has also said “U.S. lives might be lost.”
YOU: I am calling on [MOC/SENATOR] to call for the following actions immediately:
- Public clarification on the scope of U.S. involvement
- Call for and support support the Khanna–Massie War Powers Resolution in the House.
- Oppose ANY funding for military escalation without Congressional authorization.
YOU: Are we or are we not at war with Iran? Congress needs to answer this question, and do it quickly.
YOU: [OPTIONAL COMMENTS – e.g. Clarify you’d like a written response]](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:vdabazxnghujbebpi2ektqgi/bafkreihe6g2l2zn2cx4pblvsgmdykxykwi44mqhd7jeqyv57qclqkbv6mq)
A call script for elected representatives: U.S. attack on Iran: YOU: Hi, my name is [NAME]. I’m a constituent from [ZIP CODE]. YOU: I’m calling to demand [MOC/SENATOR] take urgent action after the United States joined Israel in launching strikes on Iran today. YOU: The Trump administration has again taken military action without any specific Congressional authorization. President Trump has also confirmed that the U.S. has undertaken “major operations” in Iran and has also said “U.S. lives might be lost.” YOU: I am calling on [MOC/SENATOR] to call for the following actions immediately: - Public clarification on the scope of U.S. involvement - Call for and support support the Khanna–Massie War Powers Resolution in the House. - Oppose ANY funding for military escalation without Congressional authorization. YOU: Are we or are we not at war with Iran? Congress needs to answer this question, and do it quickly. YOU: [OPTIONAL COMMENTS – e.g. Clarify you’d like a written response]
Do it now.
Yes, you can leave a message. Yes, call the DC offices.
Script here again.
Announcement for a webinar on GLP-1 drugs reducing symptoms in ME/CFS patients, featuring Professor Carmen Scheibenbogen and Dr. Jessica Maya.
Join us for a webinar with Dr. Carmen Scheibenbogen, “GLP-1 Drugs to Reduce Symptoms in People with ME/CFS & Identify Disease Subgroups," and learn how her research could help identify biomarkers & treatments.
Thurs., April 16 @ 8:30 am PT / 11:30 am ET
Register here:
https://ow.ly/AybC50YmL8c
Solve M.E. webinar announcement for April 28 on discovering target antigens for dysfunctional T cells in ME/CFS and Long COVID with four expert speakers.
📢 New webinar! Dr. Liisa Selin, Dr. Ayano Kohlgruber, & Dr. Roshan Kumar will discuss "The Discovery of Target Antigens for Dysfunctional T Cells in #MECFS and #LongCOVID."
WHEN: Tuesday, April 28 @ 3:00 pm PT / 6:00 pm ET.
Register here:
https://ow.ly/VnlJ50YmLTQ
Graphic with a dark blue background and pink and cyan accents titled "PROGRESS WORTH CELEBRATING." Large pink text reads "GOOD NEWS: Major breakthrough for ME/CFS research" with a party popper emoji. The main text announces that DISCOVER-ME, co-led by Prof Carding, has received €7.5 million in EU funding. It involves 21 international partners studying 2,000 patients to deliver biologically validated disease classification, actionable biomarkers, AI-driven stratification, and foundations for precision trials and drug repurposing in ME/CFS. The Long Covid Advocacy logo is at the bottom right.
Some good news!
We do (🤞) seem to be at a turning point of decent research being funded for #ME
See S4ME forum post for more details:
🖇️ tinyurl.com/msbft7e6
Peaceful and effective protests have been taken to a new level by the Portland-initiated inflatable frogs.
It was a great honor to welcome the Portland Frog Brigade and their peaceful resistance to Washington, D.C. ahead of the State of the Union.
Watching your speech now - you are such a good speaker!
Excited to be a part of tonight’s lineup at State of the Swamp! It will be livestreamed so tune in (and I promise it will be a more entertaining alternative coverage than Kid Rock’s halftime show 😂)
