iiinova — where your digital self keeps evolving

#MEAction Network @meactnet.bsky.social · 1h

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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pumpkin @pumpkinstars.bsky.social · 29/09/2026

thank you to the advocates fighting g for all of us with #MECFS I am in california and will eventually need state support again. Your courage and strength to do these taxing things help us all 💛 thank you to everyone

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Amber Love (she/her) @amberunmasked.bsky.social · 28/09/2026

@mikiesherrill.bsky.social NJ needs to get on this. Since receiving mail that under the new "work rules" I would lose my coverage, I've been dreading being uninsured again. MC has been the only reason I have seen doctors, the dentist, and had tests illuminating an incurable disease not listed here.

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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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#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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Natasha Devon @natashadevon.bsky.social · 24/09/2026

George will be coming on my show this weekend to discuss this very important article.

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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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It's ME(Jaime) @exceedhergrasp1.bsky.social · 24/09/2026

Find every talk here: bsky.app/profile/exce...

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It's ME(Jaime) @exceedhergrasp1.bsky.social · 23/09/2026

I think I'm going to close 'er up, folks. See you tomorrow, either in person or from home! We'll see how I do. ❤️ Thanks for following along! I'll create headers for every major talk in one thread because a) people went very fast and b) NIH's internet was too slow to upload images quickly enough

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It's ME(Jaime) @exceedhergrasp1.bsky.social · 23/09/2026

Talking about allodynia in murine models. Allodynia is when pain is produced by a non-painful stimulus. If you give LPS, hypersensitivity to pain occurs (Note: LPS is lipopolysaccharide, which is often used as an infectious proxy) Male mice showed increased allodynia-- but not female mice

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It's ME(Jaime) @exceedhergrasp1.bsky.social · 23/09/2026

Continuing after lunch, we're on the #MECFS panel, along with #Lyme and #EBV. Alt text in reply. 🧪

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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

Registration is now open for the RECOVER-TLC’s 3rd annual workshop on Nov. 4-5, 2026. Virtual & in person options: ow.ly/Jwrt50ZQIou "This two-day session includes keynote speakers, interactive panels, input from people with lived experience, and networking opportunities." #MECFS #pwLC

Save the date for RECOVER-TLC's third annual workshop on November 4 and 5, 2026, available in person and virtually. Registration is now open.

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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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#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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#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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#MEAction Network @meactnet.bsky.social · 20/09/2026

We are honored to share an amazing poem sent in for our Severe ME Artists Project. We are featuring “In a Room I Lie (For Rachel)” by Adrian Bagley. Adrian, if I can tag you, let me know! All art: www.meaction.net/severe-me-artists-… Thanks to CoRy Wysz 💤 for the video.

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Anna Gifty @itsafronomics.blacksky.app · 20/09/2026

As I'm navigating recovery, I'm reminded of the incredible disability activist Tinu Abayeomi-Paul: "To be a Black disabled woman in America is to be unwillingly invisible in your greatest time of need." And truthfully, I think her words speak to Black women in pain more generally.

yesmagazine.org

What Black Disabled Women Want

The basic human rights of proper health care and opportunities through work should be available to everyone.

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

Quick tip: Klimas in sharing management targets says studies show compression works in terms of dysautonomia/POTS. She acknowledges difficulty in patients wearing compression but to at least use belly and thigh if you cannot manage toes on up. I cannot do high level shares but can manage a tip!

Slide from talk at CDC ME/CFS meeting by Dr. Nancy Klimas. Mediator-focused management Autonomic- hemodynamic dysfunction with 3 boxes: clinical pattern to identify, management targets, and studies needed.

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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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AAPD - The American Association of People with Disabilities @aapd.com · 16/09/2026

We know that election day feels far away, but if you're disabled, you already know: planning ahead is how we ensure success (and success at the ballot box is your right!). Plan ahead. Vote. Be an accessible democracy defender! Are you already registered to vote in 2026? 😎

A red and blue list on a cream colored background that says: "Make a plan to vote. Check your voter registration or register. Learn key dates, deadlines, issues, and your polling location. Make an accessibility plan. Save 866-OUR-VOTE. Call it in case you have issues. Learn your voting rights. Plan to vote as early as possible and track your ballot."

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AAPD - The American Association of People with Disabilities @aapd.com · 18/09/2026

Getting involved with your local community before Election Day is important. Here are a couple ways you can do that. See if there’s a REV UP coalition in your state: www.aapd.com/revup-join

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Open Medicine Foundation (OMF) @openmedf.bsky.social · 18/09/2026

Last day to complete the Understanding Post-Exertional Symptom Worsening in ME/CFS survey. Your responses go directly into CTN Lite trial design — shaping the terminology, outcome measures, and how crashes are defined and measured. 👉 Take the Survey: ow.ly/AVBY50ZPaJM

Open Medicine Foundation announces last day to participate in ME/CFS post-exertional symptom worsening study closing September 18.

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

The first ME/CFS CDC meeting since 2024 starts in less than an hour! #MyalgicEncephalomyelitis #MECFS

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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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Julia Métraux @juliametraux.bsky.social · 14/09/2026

It's Disability Voting Rights Week! In 2024, for @motherjones.com, I reported on accessibility issues for churches being common polling locations. www.motherjones.com/politics/202...

motherjones.com

Churches don't have to be accessible. That's a voting rights problem.

In 2024, millions of people will vote at religious sites. What if you're disabled?

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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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#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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#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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#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

Everyone has a role to play in making our elections accessible. If you are voting in person this year, take this guide with you and help identify and address accessibility barriers. ow.ly/s0PV50ZN3nc #DisabilityVote #RevUp2026 AAPD - The American Association of People with Disabilities

On a cream colored background, the words “Be a defender!” and “Report barriers!” are in all-caps blue and red text, respectively. Underneath are the words “Safe, Accessible, Barrier-Free, Encourage others to vote” with alternating red and blue checkmarks next to each term. To the left of that is a graphic of a ballot box, and underneath that are the words “Election Prevention Hotline” in all caps in blue, with the phone number 866-our-vote in red, and the number written out in parentheses.

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MEAction UK @meactionuk.bsky.social · 15/09/2026

Please read this petition update about Karen Gordon and sign if you haven't already. Be aware that Karen is still very ill and having a hard time in hospital, so read with caution. www.change.org/p/save-karen... #VerySevereME

A photograph of Karen Gordon in a dark room in a hospital bed with a monitor by her bedside.

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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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#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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#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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Litsa Dremousis @litsadremousis.bsky.social · 11/09/2026

Everyone w/ #MyalgicEncephalomyelitis or #LongCovid knows this, but for allies who want to learn more: Jaime Seltzer @exceedhergrasp1.bsky.social is the Scientific Director of ME Action @meactnet.bsky.social & Time Mag named her to their Top Science 100. She’s covering Stanford’s ME symposium rn:

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#MEAction Network @meactnet.bsky.social · 11/09/2026

Morning session is done! You can keep up with today's talks via our Scientific Director Jaime Seltzer @exceedhergrasp1.bsky.social. Are your feet up? Drinking electrolytes? Pacing yourself? Remember it is all being recorded! #MyalgicEncephalomyelitis #MECFS @openmedf.bsky.social

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It's ME(Jaime) @exceedhergrasp1.bsky.social · 11/09/2026

Next up at the Stanford #MECFS Community Symposium: Sjoerd Beentjes on the UK Biobank work.

Discovery cohort (UK Biobank): UKB1

No accurate dx took, yet multiple strands of evidence

1) Self-reported CFS (n=2272)
2) ME/CFS (PQ) (n=2722)
3) ICD-10: G93.3 (n=1229)
4) GP code for ME/CFS (n=1575)

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It's ME(Jaime) @exceedhergrasp1.bsky.social · 11/09/2026

Rob Phair up now: the Itaconate Shunt.

Itaconate Shunt: a short circuit, two toxins, and a fuel leak

Rob Phair
Integrative Bioinformatics Inc
Mountain View, California USA

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It's ME(Jaime) @exceedhergrasp1.bsky.social · 11/09/2026

Continuing with Luke Liu's presentation on Stellate Ganglion Blocks in #MECFS at the Stanford #MECFS Community Symposium.

Stellate Ganglion Block for ME/CFS

Luke Liu MD
Medical Director
Neuroversion / Autonomology
Anchorage AK
Seattle WA
San Jose CA

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#MEAction Network @meactnet.bsky.social · 11/09/2026

MEAction is excited to be participating in Disability Voting Rights Week (DVRW) next week -Sept 14-18. Let’s get ready to vote! It is a nonpartisan movement hosted by the AAPD - The American Association of People with Disabilities REV UP campaign. #DisabilityVote #RevUp2026 #pwME

Disability Voting Rights Week from September 14-18, 2026. "Democracy is strongest when accessible to all! Blue background with white banners and red writing. Text at bottom: 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 · 11/09/2026

Our Scientific Director Jaime Seltzer @exceedhergrasp1.bsky.social is at the Stanford ME/cfs Conference Community Symposium. Since today is open to the community, Seltzer will sharing in the thread below! #pwME #MyalgicEncephalomyelitis #MECFS #LongCovid

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#MEAction Network @meactnet.bsky.social · 11/09/2026

Attending the Community Symposium on the Molecular Basis of ME/CFS Stanford University. Ron Davis says this symposium has been "the best meeting I have been to for ME/cfs." The previous days are confidential but today is open to the community. It will be recorded & shared! @openmedf.bsky.social

Photo of Ron Davis and Janet Dafoe starting the Symposium. (White elder man and woman sitting in a library on a screen for the meeting)

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