iiinova — where your digital self keeps evolving

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🧵 of highlighted #MECFS and #LongCovid research papers discussed in the last week on the Science for ME forum. 28 Sep - 4 Oct 2026

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Science for ME (S4ME) @s4me.info · 18h

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 Sept. 28 - Oct 4: s4me.info/threads/news... #MEcfs #PwME #LongCovid #PwLC

s4me.info

News in Brief - September 2026

This thread has a Science for ME 'News in Brief' post for each week in September 2026 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.

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David Ho @davidho.bsky.social · 03/10/2026

I don’t think everyone realizes how bad things are for US science: For the fiscal year that just ended, the Trump regime withheld $1.4 billion from the National Science Foundation’s research budget, which is about 1/5 of its primary research budget.

nytimes.com

National Science Foundation Diverted $1.4 Billion in Science Funds Mandated by Congress (Gift Article)

The move, affecting about one-fifth of the National Science Foundation’s primary research budget, is the latest sign of how the White House is asserting more control over grants.

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It's ME(Jaime) @exceedhergrasp1.bsky.social · 02/10/2026

Our paper about the challenges and opportunities in decentralized clinical trials for #LongCOVID is out! We discuss the regulatory, clinical, & disease-specific challenges we faced in building a clinical trial network for Long COVID. Please read and share with your networks! 🧪

frontiersin.org

Frontiers | Facilitators and barriers to decentralized Long COVID platform clinical trials using repurposed drugs

Long COVID is an emerging chronic condition that results in substantial impairments in quality of life, physical function, and ability to maintain gainful em...

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Erin Lee @erinmarilee.bsky.social · 02/10/2026

On Sunday October 11, Nate and I will compete in The Big Sit to raise funds for #MECFS research and we’d love your help! The Big Sit is a birding event where you try to find as many species as possible while sitting in a 17 foot circle. There are 2 ways you can help:

A white male and female couple in their 40s smile in front of a fallen southern live oak tree bleached by the sun. They are holding binoculars and smiling because they just spotted an endangered piping plover in the wild!

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#MEAction Network @meactnet.bsky.social · 02/10/2026

We are thrilled to bring you 2 new webinars from Denise Lopez- Majano & Kim Moy. "Things We Caregivers Wish We Had Known" w/ Denise on Nov. 1 at 3pm ET. “Being on the Same Team: Strengthening Relationships Through Chronic Illness” w/ Kim on Nov. 15 at 3 pm ET. Registration coming soon!

Two free caregiving webinars on November 1 and 15 at 3 PM ET for National Family Caregivers Month. Dark brown background with cream accents. Text: November 1st 3 om Et “Being on the Same Team: Strengthening Relationships Through Chronic Illness” with
Kim Moy of Caregiver Wisdom. November 15 3 pm Et "Things We Caregivers Wish We Had Known" roundtable discussion facilitated by Denise Lopez-Majano

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#MEAction Network @meactnet.bsky.social · 02/10/2026

We are delighted to bring you this new campaign at the request of our amazing caregiver volunteer Denise Lopez-Majano. Denise is turning 70 and wants to help spread kindness throughout our community - 70 acts of kindness by December 7th! DETAILS: ow.ly/1IPH50ZTE55 #pwMe #Caregiver

Bright yellow poster promoting '70 Acts of Kindness' campaign for Denise Lopez-Majano's 70th birthday with QR code to scan. Text: In honor of her 70th birthday, Denise Lopez-Majano is launching a campaign to encourage more kindness in our community and world in a very accessible way! #70by70

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#MEAction Network @meactnet.bsky.social · 01/10/2026

We're excited to bring you a new art workshop on Oct. 29 at 12 PM EST. We have a Halloween theme to celebrate spooky season! One of our wonderful volunteers & #pwME, Orion Romero, will host. ow.ly/2zFU50ZTl4T All you need is pencil, paper & way to join online! #art #spoonie #MECFS

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Amy 🌤️ @cloudsandsunshine.bsky.social · 01/10/2026

Excellent post about pediatric Long Covid with links to resources. The failure as a society and as individuals to protect our children is staggering. #LongCovidKids #pwLC

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#MEAction Network @meactnet.bsky.social · 01/10/2026

MEAction’s Partner #Caregiver Support Call led by Kim Moy of Caregiver Wisdom is coming up Oct 4th at 12 pm PDT /8 pm BST. All caregivers welcome. To join, email kim@caregiverwisdom.net. Longtime community member & caregiver Charley Kakel will lead our conversation focusing on Micro-Acts of Joy.

Graphic of woman on a couch participating in a virtual caregiver support call with four diverse people on her laptop screen. Text at top: #MEAction Partner Caregiver Support Call. Text at bottom: First Sunday of every month at 12 pm PT/ # pm ET. Logos for MEAction and Caregiver Wisdom in bottom corners. "All caregivers welcome!" is on a banner in top left.

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#MEAction Network @meactnet.bsky.social · 30/09/2026

Dealing with Uncertainty and Chronic Illness -A Workshop with Marisa Renee Lee is now available to watch! youtu.be/gopHHk_4R4c We had a meaningful time coming together as a community. Huge thanks to Lee (author of Grief is Love and Waiting for Dawn) for leading this workshop. #pwME #pwLC

Portrait of Marisa Renee Lee smiling with information on her workshop video on managing uncertainty and chronic illness. Photo: Black woman with long hair wearing a deep purple top and smiling. On each side of that photo is a picture of one of her books: Waiting for Dawn and Grief is Love. Text above: Dealing with Uncertainty and Chronic Illness- A workshop with Marisa Renee lee. Video now available!

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#MEAction Network @meactnet.bsky.social · 29/09/2026

MEpedia is going strong-- we just received notice that MEpedia reached 20,000 clicks from Google search in the past 28 days alone! Your support helps important knowledge get in the right hands. Check us out at www.me-pedia.org! #pwME #MEpedia #MECFS

Gold badge showing 20K clicks from Google Search for me-pedia.org in the last 28 days.

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#MEAction Network @meactnet.bsky.social · 28/09/2026

It is #MedicaidMonday and we are back with #FrailAndFurious campaign* updates. We have been busy and we want to make sure we share the wins along the way! Full details: www.meaction.net/post/making-... In the past weeks, MEAction advocates have been making real progress across the country.

Infographic showing ME/CFS and Long COVID medical frailty exemption progress in PA, NC, CA, WI, CO, Alaska, Nevada. White background with frail & Furious campaign and MEAction logos at top. Each update is listed in a text box. Outlines of states to the side.

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Science for ME (S4ME) @s4me.info · 28/09/2026

🧵 of highlighted #MECFS and #LongCovid research papers discussed in the last week on the Science for ME forum. 21 - 27 Sep 2026

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Science for ME (S4ME) @s4me.info · 27/09/2026

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 Sept. 21 - 27. s4me.info/threads/news... #MEcfs #PwME #LongCovid #PwLC

s4me.info

News in Brief - September 2026

This thread has a Science for ME 'News in Brief' post for each week in September 2026 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.

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It's ME(Jaime) @exceedhergrasp1.bsky.social · 26/09/2026

We watched CDC staff be ousted or suddenly decide it was time for retirement; provisional employees were fired en masse last year, and in some cases, trainings have been frozen so no one new can fully engage. CDC has been a ghost ship this year. Thanks to Apoorva for her reporting on this.

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#MEAction Network @meactnet.bsky.social · 25/09/2026

Have you checked out all the amazing things Pillow Writers has going on lately? So many options! pillowwriters.wordpress.com They are an international ME/CFS writing community, free and open to anyone with ME/CFS or Long Covid. We are honored to host this amazing group! #pwME #pwLC

Calendar listing October events for Pillow Writers with dates and times in GMT and PST, featuring sessions like Early Pillows, Standard Pillows, Pillow Crafters, WIMEL, and Softest Pillows. On cream background with fall leaves at the top.

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#MEAction Network @meactnet.bsky.social · 24/09/2026

"Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a shocking social crisis playing out behind closed doors...there has seldom been a stronger case for a public inquiry." @georgemonbiot.bsky.social discusses #MyalgicEncephalomyelitis.

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#MEAction Network @meactnet.bsky.social · 24/09/2026

"We need to ask why so many patients have been abandoned, why discredited and dangerous treatments continue to be prescribed and why ignorance and neglect still dominate, in the health system and beyond. In other words, there has seldom been a stronger case for a public inquiry." #MECFS #pwME

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#MEAction Network @meactnet.bsky.social · 23/09/2026

The afternoon sessions begin with Illuminating the Invisible Infection-Associated Conditions. You might recognize some names for this one. Follow along with our Scientific Director, Jaime Seltzer. @exceedhergrasp1.bsky.social #MECFS #NEISvoid #MyalgicEncephalomyelitis #NIH

Slide from NIH conference with title and speakers. Illuminating the Invisible: Infection-Associated Conditions
Moderated by Joseph Breen, Ph.D., NIAID
Nancy Klimas, M.D., Nova Southeastern University
Judith James, MD., Ph.D., Oklahoma Medical Research
Foundation
Michal Caspi Tal, Ph.D., Massachusetts Institute of
Technology
Alba Azola, M.D., Johns Hopkins University School of
Medicine

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#MEAction Network @meactnet.bsky.social · 23/09/2026

Scientific Director Jaime Seltzer @exceedhergrasp1.bsky.social reporting live (virtually) from the NIH From Mechanisms to Medicine conference. #pwME #MyalgicEncephalomyelitis #MECFS #LongCovid #ChronicIllness #NIH

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Billy Hanlon @bhanlon15.bsky.social · 22/09/2026

Dr. Grach: "..as of a couple weeks ago, have officially rebranded our clinic....historically our clinics were separate - Fibromyalgia, separate POTS, separate Long COVID clinics...we officially transitioned to our new Post-Infectious and Complex Chronic Conditions Clinic..."

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#MEAction Network @meactnet.bsky.social · 22/09/2026

Happy fall! Changing seasons can be tough when you have ME. Can you even notice the change? I have learned that anything I can find any joy in is good to amplify. What do you find joy in? Pumpkins? Leaves? Cooler temps? If this season is not one where you can find joy, sending you extra love!

Bright autumn leaves frame a clear blue sky with the text 'Hello Fall, Welcome cozy season!' and a heart symbol in the center.

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#MEAction Network @meactnet.bsky.social · 22/09/2026

The ME/CFS Exchange Webinar Series launches next month. 1st webinar in the quarterly series will focus on post-acute infection symptoms. October 8th from 1 pm to 3 pm ET via Zoom. Registration required: ow.ly/2ABp50ZOPKP Hosted by NINDS in partnership with MECFSnet. #NIH #PwME #MECFS

MEAction shares that NIH announces ME/CFS Exchange webinar series starting October 8. Hosted by NINDS in partnership with MECFSnet. Text: Moderator and 4 speakers are listed. October 8th at 1 to 3 pm ET. virtual.

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Solve M.E. @solveme.bsky.social · 21/09/2026

1/ News reports say the administration is drafting an executive order to create a committee that could override expert scientific review of NIH grants, shifting funding decisions away from scientific merit.

Call to action from Solve M.E. urging protection of merit-based science amid new NIH grant review reports.

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#MEAction Network @meactnet.bsky.social · 21/09/2026

Last #MedicaidMonday, we shared that CMS announced states may use a tier system to determine which Medicaid applicants qualify for the medical frailty exemption from new work requirements. Today, we are going to explain those tiers! #Medicaid #PwME #PwLC #disability #FrailAndFurious

Medicaid 3-tier model with criteria for medical frailty exemption. What may qualify people for the medical frailty exemption? Tier 1: Diagnosis alone, which a doctor has recorded in their records, may meet exemption requirements. Tier 2: Diagnosis with other supplemental information - from past claims and clinical records the state collects for you - may meet exemption requirements. Tier 3: Cases that can't be resolved through available data. Submitting additional documentation may be necessary

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#MEAction Network @meactnet.bsky.social · 21/09/2026

Applications are open for the NextGen IACC Scholarship! Trainees create original research projects using a pre-existing chronic disease dataset in this funded, mentor-led research opportunity. MS, PhD, & MD/PhD trainees in a Canadian uni by the start of 2027 can apply: ow.ly/hUmO50ZOQk2

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Science for ME (S4ME) @s4me.info · 20/09/2026

🧵 of highlighted #MECFS and #LongCovid research papers discussed in the last week on the Science for ME forum. 14 - 20 Sep 2026

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Science for ME (S4ME) @s4me.info · 20/09/2026

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 Sept. 14 - 20. s4me.info/threads/news... #MEcfs #PwMe #LongCovid #PwLC

s4me.info

News in Brief - September 2026

This thread has a Science for ME 'News in Brief' post for each week in September 2026 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.

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#MEAction Network @meactnet.bsky.social · 18/09/2026

Around 220 people are attending the ME/CFS CDC meeting right now. Dr. Nancy Klimas of Nova Southeastern University INIM is now speaking. She said it was her first time giving this talk. It is being recorded & will be shared! Very interesting so worth checking out. Klimas has so much knowledge!

First slide from talk by Dr. Klimas. Shows her name and university affiliation in blue box. Text above: How progress in Long COVID is helping us understand ME/CFS. Text below: CDC Stakeholders call

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#MEAction Network @meactnet.bsky.social · 18/09/2026

When asked whether they are looking at doing a cohort that are aging with ME/CFS...Klimas says.."I would love to do this study..would someone help me find the funding?"

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Wilhelmina Jenkins @wilhelminaj.bsky.social · 18/09/2026

Please join in if you can. CDC needs to know that we pwME are here and that we are holding them accountable!

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#MEAction Network @meactnet.bsky.social · 18/09/2026

We made it to the end of #DisabilityVotingRightsWeek! Have you checked your registration & made a voting plan? We gathered a list of resources useful to our community as you exercise your right to vote! Save them! ow.ly/97C050ZOuBu AAPD - The American Association of People with Disabilities

Poster announcing the final day of Disability Voting Rights Week with a QR code linking to resources for the disability community. Text: Disability Voting Rights Week Final Day! Check out our list of resources for the disability community! Disability Voting Rights Week (DVRW) is a nonpartisan movement hosted by the American Association of People with Disabilities and REV UP. MEAction proudly participates each year.

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#MEAction Network @meactnet.bsky.social · 17/09/2026

TOMORROW! The CDC ME/CFS Stakeholder Engagement and Communication (SEC) Conference Call is on Sept. 18th at 3:00 pm ET. Register: ow.ly/iV8W50ZLwx3 Guest speaker: Nancy Klimas, MD. Also featuring program updates from CDC's ME/CFS program staff and a Q&A. #pwME #MECFS #CDC

Announcement for CDC ME/CFS SEC Call on September 18, 2026, from 3 to 4:30 pm ET with registration required. Photo at bottom shows a person on their couch attending an online meeting with a laptop. Blue background with orange accents. Text: CDC ME/CFS SEC Call Featuring a presentation Dr. Nancy Klimas, Director of the Institute for Neuro-Immune Medicine at Nova Southeastern University. Also featuring program updates from CDC's ME/CFS program staff and a Q&A.

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NPR @npr.org · 17/09/2026

The Trump administration's efforts to lower drug prices included promised changes to Medicaid. But it's still unclear which drugs will be affected. And each state has to opt in. n.pr/4AdHAB7

n.pr

A year ago, President Trump pledged to lower Medicaid drug prices. Has that happened?

The Trump administration's efforts to lower drug prices included promised changes to Medicaid. But it's still unclear which drugs will be affected. And each state has to opt in.

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#MEAction Network @meactnet.bsky.social · 17/09/2026

The Supreme Court left in place a lower-court decision that blocked the Postal Service from implementing the new requirements in the coming weeks due to the potential that millions of voters could be disenfranchised by not having their ballots delivered. Still best to request early & return early!

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Liz Burlingame @lizmeactga.bsky.social · 17/09/2026

Schwartz has made no public appearances or remarks. What little official communication that has come from the agency has been from social media and overtly political. thehill.com/policy/healt...

thehill.com

CDC director’s ‘unusual’ silence draws scrutiny

Just a month into her tenure as director of the Centers for Disease Control and Prevention (CDC), Erica Schwartz is missing in action. The country is heading into respiratory virus season, and publ…

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#MEAction Network @meactnet.bsky.social · 17/09/2026

It is #DisabilityVotingRightsWeek. Let's talk mail-in voting. If you are voting by mail please request and return your ballot as early as possible. Each state has different rules so head to www.vote.org/absentee-ballot #RevUp2026 AAPD - The American Association of People with Disabilities

Red mailbox illustration with text encouraging voters to request and return mail ballots early, including a hotline for voting help. Text: Are you voting by mail? Request and return as early as possible. More info at www.vote.org/absentee-ballot. The Election Protection hotline 1 866 OUR VOTE

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ME/CFS Science @mecfsscience.org · 17/09/2026

1) The pharma company BioVie announced the results of the phase 2 trial of their drug Bezisterim for Long Covid. Although the primary analysis showed no significant effect, an analysis in subgroups with a great symptom burden suggested an improvement. A brief breakdown 👇

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#MEAction Network @meactnet.bsky.social · 17/09/2026

#MEAction's next #caregiver support call is Sept. 19 at 1:30 pm ET - 3:30 pm ET. We welcome caregivers of people w/ chronic diseases such as #MyalgicEncephalomyelitis (ME), #LongCOVID, #MCAS, etc! To join the calls, please email caregiver@meaction.net at we will get you set up!

Two hands (one set of hands is brown and the single hand they are clasping is deep brown) gently clasped together symbolizing support. Text: ME caregivers support call 3rd Saturday of the month 1:30 to 3:30 pm ET. For caregivers of people with myalgic encephalomyelitis (ME), Long COVID, and associated conditions. https://www.meaction.net/event-list

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#MEAction Network @meactnet.bsky.social · 16/09/2026

Election Protection Hotline. 866-OUR-VOTE Spanish/English - 888-VE-Y-VOTA Asian Languages/English - 888-API-VOTE Arabic/English - 844-YALLA-US Live chat: 866ourvote.org AAPD - The American Association of People with Disabilities & National Disability Rights Network are partners of hotline.

Election Protection Hotline contact numbers for English, Spanish, Asian languages, and Arabic with live chat link for voter assistance. Text: English – 866-OUR-VOTE (866-687-8683)
Spanish/English - 888-VE-Y-VOTA (888-839-8682)
Asian Languages/English - 888-API-VOTE (888-274-8683)
Arabic/English - 844-YALLA-US (844-925-5287)
Live chat: https://866ourvote.org/
Disability Voting Rights Week

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Solve M.E. @solveme.bsky.social · 16/09/2026

1/ 🚨Take action by Friday! NIAID has proposed eliminating its Division of Clinical Research — the infrastructure behind its clinical trials — on a public comment window of just five days. #MECFS #LongCOVID

Solve M.E. action alert on a deep teal background. Headline: Take action by Friday. Text: NIAID has proposed eliminating its Division of Clinical Research, the infrastructure behind clinical trials, on a five-day comment window. Comment by Sept 18.

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#MEAction Network @meactnet.bsky.social · 15/09/2026

NIH UPDATE: NIAID has released a proposal to eliminate its Division of Clinical Research (DCR) & move the division’s programs and responsibilities into other parts of the Institute. #MEAction has sent a detailed letter to NIAID by email in response to the proposal. www.meaction.net/post/nationa...

NIH update announces NIAID reorganization with MEAction raising concerns about effects on ME and Long COVID research. Photo of NIH building under text: NIAID proposes reorganization. MEAction submits comment and shares concerns about impact on ME and Long COVID research.

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#MEAction Network @meactnet.bsky.social · 15/09/2026

Making your plan to vote is critical! Check out AAPD - The American Association of People with Disabilities' make a plan document to help make sure you are ready: ow.ly/1Hzg50ZMI4Q #DVRW #RevUp2026 is a nonpartisan movement. #DisabilityVote #pwME #MECFS #Disability #VoteReady

A graphic with a cartoon blind person with a service dog. Title text: Be a Confident Voter. Make a Plan to Vote. Subtitle: Make your plan: bit.ly/m/REV-UP-Plan. Below the title is a bullet point list: “Make sure you are registered to vote!; Learn key dates, like election day, early voting, and mail-in voting deadlines; Choose how and when you will vote; Plan for your access needs; Learn what’s on your ballot; Know what to do if you have trouble voting.” Disability voting rights week

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victoria @vashetc.blacksky.app · 15/09/2026

I closed the survey! The website remains however :) restandmecfs.com I've added some preliminary data I have used in the past few months.

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#MEAction Network @meactnet.bsky.social · 15/09/2026

It’s #MedicaidMonday, & we have an important update! CMS announced that states may use a “tier system” to determine which Medicaid applicants qualify for the medical frailty exemption from new community engagement requirements. MEAction staff spoke to @statnews.com: www.statnews.com/2026/09/11/m...

Illustration of two cliffs labeled 2027 and 2028 symbolizing Medicaid coverage loss risks, with MEAction's fight to prevent community impact. Text: "We're looking at two cliffs." MEAction Campaigns Director Ben HsuBorger told STAT. There are two major points when people may lose their Medicaid coverage in the next 2 years. MEAction is fighting to keep our community from falling off either cliff!

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#MEAction Network @meactnet.bsky.social · 14/09/2026

Join us this #DisabilityVotingRightsWeek to Be an Accessible Democracy Defender. Let’s start at the beginning. Register to vote! If you are registered, then check your registration. Both can be done via vote.org #DisabilityVote #pwME AAPD - The American Association of People with Disabilities

Bold red and blue text spelling VOTE with a raised fist as the V, encouraging voter registration for Disability Voting Rights Week Sept. 14-18.

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It's ME(Jaime) @exceedhergrasp1.bsky.social · 14/09/2026

We've now got our flyer out for the NextGen IACC scholars applications, which open next Monday. Check it out and share! For Canadian MS, PhD, and MD/PhD students.

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Science for ME (S4ME) @s4me.info · 13/09/2026

🧵 of highlighted #MECFS and #LongCovid research papers discussed in the last week on the Science for ME forum. 7 - 13 Sep 2026

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Science for ME (S4ME) @s4me.info · 13/09/2026

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 Sept. 7 - 13. s4me.info/threads/news... #MEcfs #PwME #LongCovid #PwLC

s4me.info

News in Brief - September 2026

This thread has a Science for ME 'News in Brief' post for each week in September 2026 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.

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