iiinova — where your digital self keeps evolving

Reposted by Holly L (First Grace28 at the other place) she/her

#MEAction Network @meactnet.bsky.social · 05/10/2026

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 pm Et "Things We Caregivers Wish We Had Known" roundtable discussion facilitated by Denise Lopez-Majano “Being on the Same Team: Strengthening Relationships Through Chronic Illness” with Kim Moy of Caregiver Wisdom. November 15 3 pm Et

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Reposted by Holly L (First Grace28 at the other place) she/her

#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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Reposted by Holly L (First Grace28 at the other place) she/her

#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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Reposted by Holly L (First Grace28 at the other place) she/her

#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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Reposted by Holly L (First Grace28 at the other place) she/her

#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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Reposted by Holly L (First Grace28 at the other place) she/her

#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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Holly L (First Grace28 at the other place) she/her @hollyl.bsky.social · 22/09/2026

Lots of folks in #pwME #MyalgicEncephalomyelitis #MECFS #Spoonie community are in need. Mutual aid matters. When able, I try to divide giving between mutual aid & non-profits doing the work to help folks so hopefully one day they will not need mutual aid! Sharing a few folks in need.

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Holly L (First Grace28 at the other place) she/her @hollyl.bsky.social · 22/09/2026

First day of fall! Fall is my happy place...if a season can be that. Unfortunately, this 1st day of fall I feel rotten. Hoping it is brief ...whatever is adding to the yuck. I normally do a little better in fall until November. Sharing pics from last fall! Also, check out the thread please.

Potted flowers on patio w trees in background

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Reposted by Holly L (First Grace28 at the other place) she/her

#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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Reposted by Holly L (First Grace28 at the other place) she/her

#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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Reposted by Holly L (First Grace28 at the other place) she/her

#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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Reposted by Holly L (First Grace28 at the other place) she/her

#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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Reposted by Holly L (First Grace28 at the other place) she/her

#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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Reposted by Holly L (First Grace28 at the other place) she/her

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

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

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Reposted by Holly L (First Grace28 at the other place) she/her

#MEAction Network @meactnet.bsky.social · 10/09/2026

Content note: suicide loss . . We hold those we have lost in our hearts always. We must mourn together. Join us in lighting a candle to show your support for suicide prevention, to remember a loved one and for the survivors of suicide. Resources: www.meaction.net/crisis-resources #WSPD

A lit candle glowing softly against a dark background with a message honoring those lost to suicide and encouraging support on World Suicide Prevention Day. Text in full: We hold those we have lost in our hearts always. We say your name. We remember and carry you with us. Join us in lighting a candle to show your support for suicide prevention, to remember a loved one and for the survivors of suicide. World Suicide Prevention Day.

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Reposted by Holly L (First Grace28 at the other place) she/her

Cynthia Johnson @minetodo.bsky.social · 09/09/2026

As you are able, please give to this new Friends of Cynthia Johnson Fall 2026 GoFundMe. Timely help is greatly needed! And sharing with others would be greatly appreciated. Thank you for your kindness and help! 💛 www.gofundme.com/f/Friends-of... #StandByMEcfs #StillSickStillFighting #pwME #MEcfs

gofundme.com

Donate to Friends of Cynthia Johnson - Fall 2026 - Health Care, Etc., organized by Cynthia Johnson

Dear Friends of Cynthia Johnson and kind souls: As you a… Cynthia Johnson needs your support for Friends of Cynthia Johnson - Fall 2026 - Health Care, Etc.

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Reposted by Holly L (First Grace28 at the other place) she/her

#MEAction Network @meactnet.bsky.social · 10/09/2026

We are sharing a fundraiser for a member of our community in need of timely help with medical, health care and disability related expenses as well as critical basic monthly living costs. Cynthia is a long-time member of our community. #Disability Our policy: docs.google.com/document/d/1...

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Reposted by Holly L (First Grace28 at the other place) she/her

#MEAction Network @meactnet.bsky.social · 30/08/2026

¡Nos entusiasma compartir noticias de Pillow Writers en Español! A partir del 1 de septiembre, contaremos con una anfitriona invitada especial: la reconocida poeta Maria R. Palacios, quien conducirá nuestras sesiones de Pillow Writers en Español. ow.ly/IKTt50ZGSxF

Colorful decorative pillows arranged on a couch with vibrant patterns and textures in a cozy setting. Another picture of a woman with dark hair and medium skin tone wearing pink headphones and smiling. Text: Pillow Writers en Español El martes, 1 de septiembre de 2026 retorna Pillows en Español el primer martes de cada mes a las 13:00h, hora de Colombia.
¡Le damos la bienvenida a María R. Palacios!

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Reposted by Holly L (First Grace28 at the other place) she/her

#MEAction Network @meactnet.bsky.social · 31/08/2026

Please check out and share our powerful Severe ME Artists Projects: www.meaction.net/severe-me-ar...

meaction.net

Severe ME Artists Project

Browse through the galleries of the Severe ME Artists Project going back to 2021.

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Reposted by Holly L (First Grace28 at the other place) she/her

#MEAction Network @meactnet.bsky.social · 31/08/2026

Jaime Seltzer @exceedhergrasp1.bsky.social shares how community & arts help bring us all together as we fight together for a better life for us all. This is a clip of Coffee With a Clinician hosted by @batemanhornecenter.bsky.social for Severe ME Month. youtu.be/HlfbfyRl3K8?... #SevereME

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Reposted by Holly L (First Grace28 at the other place) she/her

#MEAction Network @meactnet.bsky.social · 29/08/2026

6. Send someone a direct message or leave them a comment on their social media. Let them know you are thinking of them. 7. Send some love out to someone who is isolated with severe ME, and trust it to land with someone who needs to feel that love today. #spoonie #disability

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Reposted by Holly L (First Grace28 at the other place) she/her

#MEAction Network @meactnet.bsky.social · 29/08/2026

3. Watch our Severe ME Artists Project Community Watch Party with @corywysz.bsky.social. All written pieces are read aloud. www.youtube.com/watch?v=deJL... 4. Donate to an org doing the work and also watch for mutual aid opportunities. meaction.net/donate and www.facebook.com/share/p/18X8...

youtube.com

8/8/2026 Severe ME Day Artists Project 2026 Community Watch Party

YouTube video by CoRy Wysz | Photo Alchemist

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Reposted by Holly L (First Grace28 at the other place) she/her

#MEAction Network @meactnet.bsky.social · 29/08/2026

Ways you can help and join in: 1. Share your story. Amplify the stories of others. We have been sharing throughout the month. 2. Visit our Severe ME Artists Project. We have 6 years worth of powerful art. www.meaction.net/severe-me-ar...

meaction.net

Severe ME Artists Project 2026

#MEAction is excited to present this year's Severe ME Artists project in recognition of Severe ME Awareness Day!

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Reposted by Holly L (First Grace28 at the other place) she/her

#MEAction Network @meactnet.bsky.social · 29/08/2026

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

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Reposted by Holly L (First Grace28 at the other place) she/her

#MEAction Network @meactnet.bsky.social · 25/08/2026

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?...

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Reposted by Holly L (First Grace28 at the other place) she/her

#MEAction Network @meactnet.bsky.social · 26/08/2026

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

Call West Virginia and Maine senators to support ME/CFS Research Roadmap funding with a provided toolkit for advocacy. Graphic with an outline of the state of Maine and the state or West Virginia are on either side of a road going through the image. Text above: ME/CFS Research Roadmap Action Request! f you live in West Virginia or Maine, CALL YOUR SENATOR and tell them to support appropriations for ME/CFS Research Roadmap. Toolkit provided!

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Reposted by Holly L (First Grace28 at the other place) she/her

#MEAction Network @meactnet.bsky.social · 24/08/2026

#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.

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Reposted by Holly L (First Grace28 at the other place) she/her

The Sick Times @thesicktimes.org · 19/08/2026

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 coming weeks. Read more from @betsyladyzhets.bsky.social: thesicktimes.org/2026/08/18/c...

ID: MEAction advocates demonstrate outside of the Capital building in Washington D.C. on a sunny, spring day. They wear red t-shirts that read "millions missing" and "SOS" as well as high quality masks. One is in a wheel chair, while another sits on a stool. They hold signs that say, "Millions Missing, SOS, 2025, MEAction" that have an illustration of the statue of liberty. The text reads, “The Sick Times. Congress’s 2027 budget could include new funding for Long COVID and ME. By Betsy Ladyzhets. Reporting.”

Key points you should know:

Congress is legally required to pass a federal budget every year. The budget process, called appropriations, can be an opportunity to secure new research funding more quickly than specific, standalone bills.

Advocates are pushing for the fiscal year 2027 budget to include $50 million for the ME/CFS Research Roadmap, a detailed plan to advance ME research from the National Institutes of Health (NIH).

Some 2027 budget proposals include opportunities for new Long COVID and infection-associated chronic condition (IACC) funding across the NIH, other health agencies, and the Department of Defense.

Advocates are focusing on contacting senators, as Senate offices are still drafting appropriations bills in the next few weeks while the House versions of these bills are already written.

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Reposted by Holly L (First Grace28 at the other place) she/her

pumpkin @pumpkinstars.bsky.social · 19/08/2026

Star fall To Catch a Falling Star and Wish upon it: I wish Wishes would come true 💫 #SevereME #MECFS #NEISvoid #MEAction 2026

My hand, lying open on my bed in my dark room. Several tiny lights in the shape of stars are on my hand. My black out curtains have star cut outs and this was the most sun I could tolerate. The star lights are slightly different hues based on what light bounces off of outside. Warm toned to reflect the red wall outside, or cool toned from the sky.

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Reposted by Holly L (First Grace28 at the other place) she/her

#MEAction Network @meactnet.bsky.social · 22/08/2026

Watch party time! Time to gather in that chat - no worries about being on screen- and enjoy some art together! #pwME #SevereME #art

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Reposted by Holly L (First Grace28 at the other place) she/her

#MEAction Network @meactnet.bsky.social · 09/08/2026

Tonight we light a candle in memory of those we have lost to #SevereME. We mourn. We hold all who are mourning in love. We come together as people with debilitating illness, caregivers, partners, allies, advocates, researchers, & clinicians. #SevereMEday

A single glowing candle with blurred lights in the background honoring those lost to severe ME on August 8.

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Reposted by Holly L (First Grace28 at the other place) she/her

Wilhelmina Jenkins @wilhelminaj.bsky.social · 09/08/2026

Today is Severe ME Day. I wanted to post today about falling from moderate/severe ME into severe ME 4 1/2 years ago. Yesterday, I sat in my wheelchair a little too long. Today, I’m wrecked. Severe ME is totally unforgiving. (My daughter is writing this.)

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Reposted by Holly L (First Grace28 at the other place) she/her

#MEAction Network @meactnet.bsky.social · 10/08/2026

Join the #UnitedForME collaborative (Bateman Horne Center, #MEAction Network, Open Medicine Foundation (OMF), Solve M.E.) with WIMEL guests for a special "Coffee" with a Clinician in honor of Severe ME Awareness Month on Aug 12 at 12 pm ET. Register: ow.ly/eV4u50ZwhXA #SevereME

Portraits of six speakers featured in a 'Coffee with a Clinician' event for Severe ME/CFS Awareness Month. Pictured from left to right 1st row: Amy Mooney (Bateman Horne) , Laurie Jones (MEAction), Danielle Meadows (Open Medicine Foundation) 2nd row: Emily Taylor (Solve M.E.) , Stoo Brown (WIMEL), and Clayton Powers (moderator)
Text at top: "Coffee" with a clinician in recognition of Severe ME/CFS Awareness Month

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Reposted by Holly L (First Grace28 at the other place) she/her

#MEAction Network @meactnet.bsky.social · 11/08/2026

A community member requested we share this. Please check it out! Emily has been part of our community for many years and needs a cervical spinal fusion and/or decompression and/or stent the veins in the left and/or right side of my head (and maybe more care to help) #pwME #SevereME

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Reposted by Holly L (First Grace28 at the other place) she/her

#MEAction Network @meactnet.bsky.social · 08/08/2026

A quick last minute surprise today- our volunteer @corywysz.bsky.social is streaming the Severe ME Artists Project on his channel- including reading the written work! Thanks CoRy. Watch CoRyWysz with me on Twitch! www.twitch.tv/corywysz?sr=a #SevereME #SevereMEDay

twitch.tv

CoRyWysz - Live on Twitch

Severe ME Artists Watch-A-Long | !SevereME !MEArt | Streaming just chatting.

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Holly L (First Grace28 at the other place) she/her @hollyl.bsky.social · 22/07/2026

Definitely a hero to me for the massive deep dives he has been doing for the past year! It's a lot! #Medicaid #MECFS #LongCovid #MyalgicEncephalomyelitis #DisabilityJustice #disability

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Reposted by Holly L (First Grace28 at the other place) she/her

#MEAction Network @meactnet.bsky.social · 16/07/2026

Gwynn joined us in DC for #MillionsMissing. She shared Lisa’s personal essay from the new book “What is Myalgic Encephalomyelitis Like?" Lisa so powerfully shared her story of life with severe ME. Full video: youtu.be/-M5sCn1ftqw WIMEL book of essays: tinyurl.com/WIMEL #PwME #SevereME

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Reposted by Holly L (First Grace28 at the other place) she/her

#MEAction Network @meactnet.bsky.social · 18/07/2026

Got a few minutes this weekend? We have a template that walks you through submitting a comment to CMS regarding their Interim Final Rule on Medicaid work requirements. Deadline July 31! Our template walks you through step-by-step. ow.ly/hoVX50ZkQhc #Medicaid #pwME #pwLC

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Reposted by Holly L (First Grace28 at the other place) she/her

#MEAction Network @meactnet.bsky.social · 20/07/2026

Are you someone with myalgic encephalomyelitis/chronic fatigue syndrome #MECFS or #LongCOVID who’s been to the emergency room at least once over the past 10 years for your symptoms? Clinical care needs your voice! Take the Emergency Department research survey: surveys.mayoclinic.org/jfe/form/SV_...

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Reposted by Holly L (First Grace28 at the other place) she/her

#MEAction Network @meactnet.bsky.social · 21/07/2026

We are excited to bring you a new workshop with award-winning & bestselling author Marisa Renee Lee! Register now for the free virtual workshop on navigating the uncertainty of chronic illness on August 14th at 12 pm ET: ow.ly/Kqx550ZqRNx #pwME #LongCovid #MECFS #spoonie #author

Virtual workshop on managing uncertainty and chronic illness with Marisa Renee Lee, scheduled for August 14, 2026, at 12 PM EDT. Photo of Marisa Renee Lee in center. Black woman with long slightly curled hair wearing a purple sweater smiling sitting in front of a bookcase. Text above and below about the workshop. Books Waiting for Dawn and Grief is Love pictured at bottom of image.

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