Medicare at-home telehealth access for ME/CFS is set to change on 1/30 unless legislators act. Let them know this issue affects constituents. Take action: www.meaction.net/take-action
TAKE ACTION FOR ME/CFS | #MEAction
#MEAction is dedicated to taking action in places that affect people with ME, Long COVID, and other chronic illnesses. Join us!
www.meaction.net
January 16, 2026 at 12:11 AM
Medicare at-home telehealth access for ME/CFS is set to change on 1/30 unless legislators act. Let them know this issue affects constituents. Take action: www.meaction.net/take-action
We've seen a distinct drop in interest in these conditions as people have memory-holed COVID; they'd like to forget infection-associated chronic conditions, but they're impacting everyone, including kids. I'm the Scientific Director at #MEAction, and I advocate for #MECFS, #LongCOVID, & other IACCs.
Here's today's column on the astonishing, ongoing mistreatment of people with #ME/CFS. Please spread it far and wide: the only thing which can break the media's wall of indifference is seeing an article about the issue go viral. Thank you. 1/2
www.theguardian.com/commentisfre...
www.theguardian.com/commentisfre...
Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot
Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot
www.theguardian.com
September 24, 2026 at 11:35 PM
We've seen a distinct drop in interest in these conditions as people have memory-holed COVID; they'd like to forget infection-associated chronic conditions, but they're impacting everyone, including kids. I'm the Scientific Director at #MEAction, and I advocate for #MECFS, #LongCOVID, & other IACCs.
Donate to support #MEAction in our work! www.meaction.net/donate
Donate - #MEAction Network
www.meaction.net
August 8, 2024 at 3:27 PM
Donate to support #MEAction in our work! www.meaction.net/donate
#MEAction has new swag on Bonfire! I've included a few of my faves in this 🧵, but there's a lot more at the site!
www.bonfire.com/store/meacti...
www.bonfire.com/store/meacti...
#MEAction Store | Official Merchandise | Bonfire
#MEAction is igniting a global revolution in ME care. Our movement fights for recognition, education, and research. . At #MEAction, we're building a global movement to...
www.bonfire.com
September 12, 2025 at 5:03 PM
#MEAction has new swag on Bonfire! I've included a few of my faves in this 🧵, but there's a lot more at the site!
www.bonfire.com/store/meacti...
www.bonfire.com/store/meacti...
#MEAction’s Town Hall is February 25th at 2pm PST/5pm EST. Speakers include #MEAction staff members, volunteers, and Omar Wasow (MEAction board), Kehsi Iman Wilson (MEAction Board & NDS), AJ Link (New Disabled South), and Rabbi Elliot Kukla.
RSVP: ow.ly/NNYn50V3OZR
RSVP: ow.ly/NNYn50V3OZR
February 20, 2025 at 8:37 PM
#MEAction’s Town Hall is February 25th at 2pm PST/5pm EST. Speakers include #MEAction staff members, volunteers, and Omar Wasow (MEAction board), Kehsi Iman Wilson (MEAction Board & NDS), AJ Link (New Disabled South), and Rabbi Elliot Kukla.
RSVP: ow.ly/NNYn50V3OZR
RSVP: ow.ly/NNYn50V3OZR
This year has been heavy—political whiplash, uncertainty, and real harm for our community. #MEAction is here, advocating on the ground.
Remember, HOPE is a sweet rebellion.
#MEAction is a lantern in the darkness.
We can only continue our work with your support. www.meaction.net/lantern-in-t...
Remember, HOPE is a sweet rebellion.
#MEAction is a lantern in the darkness.
We can only continue our work with your support. www.meaction.net/lantern-in-t...
November 7, 2025 at 5:00 PM
This year has been heavy—political whiplash, uncertainty, and real harm for our community. #MEAction is here, advocating on the ground.
Remember, HOPE is a sweet rebellion.
#MEAction is a lantern in the darkness.
We can only continue our work with your support. www.meaction.net/lantern-in-t...
Remember, HOPE is a sweet rebellion.
#MEAction is a lantern in the darkness.
We can only continue our work with your support. www.meaction.net/lantern-in-t...
Glad to see #MEAction work cited! This is also really well-written.
A brilliant essay on the relationships of: the COVID pandemic, climate change, the disabled community and the maddening indifference to it all.
Written by Violet Affleck: someone who sees the big picture and is making a difference.
yaleglobalhealthreview.com/2025/05/18/a...
Written by Violet Affleck: someone who sees the big picture and is making a difference.
yaleglobalhealthreview.com/2025/05/18/a...
A Chronically Ill Earth: COVID Organizing as a Model Climate Response in Los Angeles
BY VIOLET AFFLECK I spent the January fires in Los Angeles arguing with my mother in a hotel room. She was shell-shocked, astonished at the scale of destruction in the neighborhood where she raised…
yaleglobalhealthreview.com
May 20, 2025 at 3:22 PM
Glad to see #MEAction work cited! This is also really well-written.
Your reminder that #MEAction has a ✨protest guide✨ for people with energy-limiting illnesses like #MECFS:
#DisabilitySky #NEISvoid
www.meactions.org/_files/ugd/b...
#DisabilitySky #NEISvoid
www.meactions.org/_files/ugd/b...
www.meactions.org
June 13, 2025 at 3:00 AM
Your reminder that #MEAction has a ✨protest guide✨ for people with energy-limiting illnesses like #MECFS:
#DisabilitySky #NEISvoid
www.meactions.org/_files/ugd/b...
#DisabilitySky #NEISvoid
www.meactions.org/_files/ugd/b...
Great to see the #MEAction protest! ❤️ #LongCOVIDAwarenessDay
Rolling Stone: 'Five Years of Pain, Fatigue, and Gaslighting: Life With Long Covid'
'We've been discounted for half a decade, still sick from a pandemic the rest of the world would rather forget'
www.rollingstone.com/culture/cult...
'We've been discounted for half a decade, still sick from a pandemic the rest of the world would rather forget'
www.rollingstone.com/culture/cult...
Five Years of Pain, Fatigue, and Gaslighting: Life With Long Covid
People with Long Covid are still sick from a pandemic the rest of the world would rather forget.
www.rollingstone.com
March 15, 2025 at 11:23 PM
Great to see the #MEAction protest! ❤️ #LongCOVIDAwarenessDay
BREAKING NEWS: #MEAction has just received a $25,000 fundraising match opportunity! Every donation will be doubled! www.meaction.net/donate
#MEAction is working hard to support and fight for this community on multiple fronts, but we CANNOT do this work without your financial support.
#pwME
#MEAction is working hard to support and fight for this community on multiple fronts, but we CANNOT do this work without your financial support.
#pwME
June 25, 2025 at 7:23 PM
BREAKING NEWS: #MEAction has just received a $25,000 fundraising match opportunity! Every donation will be doubled! www.meaction.net/donate
#MEAction is working hard to support and fight for this community on multiple fronts, but we CANNOT do this work without your financial support.
#pwME
#MEAction is working hard to support and fight for this community on multiple fronts, but we CANNOT do this work without your financial support.
#pwME
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.
Full details: www.meaction.net/post/making-...
In the past weeks, MEAction advocates have been making real progress across the country.
September 28, 2026 at 9:46 PM
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.
Full details: www.meaction.net/post/making-...
In the past weeks, MEAction advocates have been making real progress across the country.
I'm giving a talk next week and you're invited!
✨Improving Quality of Life in ME/CFS and Infection-Associated Chronic Conditions✨
The talk is donate-as-you're-able, and 20% will support #MEAction.
You can sign up to attend here: us06web.zoom.us/meeting/regi...
✨Improving Quality of Life in ME/CFS and Infection-Associated Chronic Conditions✨
The talk is donate-as-you're-able, and 20% will support #MEAction.
You can sign up to attend here: us06web.zoom.us/meeting/regi...
December 12, 2025 at 6:23 PM
I'm giving a talk next week and you're invited!
✨Improving Quality of Life in ME/CFS and Infection-Associated Chronic Conditions✨
The talk is donate-as-you're-able, and 20% will support #MEAction.
You can sign up to attend here: us06web.zoom.us/meeting/regi...
✨Improving Quality of Life in ME/CFS and Infection-Associated Chronic Conditions✨
The talk is donate-as-you're-able, and 20% will support #MEAction.
You can sign up to attend here: us06web.zoom.us/meeting/regi...
Reminder that #MEAction has crisis resources here: www.meaction.net/crisis-resou...
This is not meant to substitute for an ethical healthcare system but just as a reminder that we keep this list up to date for whoever, whenever they may want or need it.
This is not meant to substitute for an ethical healthcare system but just as a reminder that we keep this list up to date for whoever, whenever they may want or need it.
CRISIS RESOURCES | #MEAction
Living with ME can be extremely difficult. #MEAction strives to create spaces of support.
www.meaction.net
December 14, 2025 at 6:20 PM
Reminder that #MEAction has crisis resources here: www.meaction.net/crisis-resou...
This is not meant to substitute for an ethical healthcare system but just as a reminder that we keep this list up to date for whoever, whenever they may want or need it.
This is not meant to substitute for an ethical healthcare system but just as a reminder that we keep this list up to date for whoever, whenever they may want or need it.
Hello, new followers! Past time I did an intro thread. 👋
I'm Jaime Seltzer, Scientific Director at #MEAction, a nonprofit for people with infection-associated chronic illnesses like #MECFS & #LongCOVID. I maintain research affiliations w/Stanford U & Université de Montréal. 🧵
I'm Jaime Seltzer, Scientific Director at #MEAction, a nonprofit for people with infection-associated chronic illnesses like #MECFS & #LongCOVID. I maintain research affiliations w/Stanford U & Université de Montréal. 🧵
March 30, 2025 at 9:01 PM
Hello, new followers! Past time I did an intro thread. 👋
I'm Jaime Seltzer, Scientific Director at #MEAction, a nonprofit for people with infection-associated chronic illnesses like #MECFS & #LongCOVID. I maintain research affiliations w/Stanford U & Université de Montréal. 🧵
I'm Jaime Seltzer, Scientific Director at #MEAction, a nonprofit for people with infection-associated chronic illnesses like #MECFS & #LongCOVID. I maintain research affiliations w/Stanford U & Université de Montréal. 🧵
Great news! #MEAction & the Mayo Clinic have been awarded the Sigma 2024 American Nurses Credentialing Center Evidence-Based Practice Implementation Grant awarded by The STTI Honor Society of Nursing.
Details: www.meaction.net/2024/11/18/m...
#pwME #MECFS #MyalgicEncephalomyelitis
Details: www.meaction.net/2024/11/18/m...
#pwME #MECFS #MyalgicEncephalomyelitis
#MEAction & Mayo Clinic Projects Continue - New Grant Awarded
A new grant awarded by Sigma
www.meaction.net
November 18, 2024 at 6:34 PM
Great news! #MEAction & the Mayo Clinic have been awarded the Sigma 2024 American Nurses Credentialing Center Evidence-Based Practice Implementation Grant awarded by The STTI Honor Society of Nursing.
Details: www.meaction.net/2024/11/18/m...
#pwME #MECFS #MyalgicEncephalomyelitis
Details: www.meaction.net/2024/11/18/m...
#pwME #MECFS #MyalgicEncephalomyelitis
This is a book designed to explain to policy makers, healthcare professionals and friends and family what life with Myalgic Encephalitis is actually like.
Buy it, share it and help us promote it to a wider audience
wimel2.wordpress.com
Buy it, share it and help us promote it to a wider audience
wimel2.wordpress.com
What Is Myalgic Encephalomyelitis Like?
Patient and Caregiver Perspectives
wimel2.wordpress.com
May 12, 2026 at 4:05 PM
#MEAction: 'Our pilot program offers free support applying for in-home help for Minnesotans with Long COVID, ME/CFS, and energy limiting illness'
'We’re excited to announce the official launch of the Minnesota Home Help Navigation Program, a new pilot program created..'
mailchi.mp/meaction/off...
'We’re excited to announce the official launch of the Minnesota Home Help Navigation Program, a new pilot program created..'
mailchi.mp/meaction/off...
Official Launch of #MEAction’s Minnesota Home Help Navigation
mailchi.mp
September 3, 2025 at 4:06 PM
#MEAction: 'Our pilot program offers free support applying for in-home help for Minnesotans with Long COVID, ME/CFS, and energy limiting illness'
'We’re excited to announce the official launch of the Minnesota Home Help Navigation Program, a new pilot program created..'
mailchi.mp/meaction/off...
'We’re excited to announce the official launch of the Minnesota Home Help Navigation Program, a new pilot program created..'
mailchi.mp/meaction/off...
World ME Day - May 12, 2025
We need good health care, up-to-date medical education and immediate research funding!
I have suffered from ME/CFS since 2009.
#StandByMEcfs #StillSickStillFighting #MEcfs #EndMEcfs
#MEAction #MillionsMissing #TeachMETreatME #pwME
We need good health care, up-to-date medical education and immediate research funding!
I have suffered from ME/CFS since 2009.
#StandByMEcfs #StillSickStillFighting #MEcfs #EndMEcfs
#MEAction #MillionsMissing #TeachMETreatME #pwME
May 12, 2025 at 7:10 AM
World ME Day - May 12, 2025
We need good health care, up-to-date medical education and immediate research funding!
I have suffered from ME/CFS since 2009.
#StandByMEcfs #StillSickStillFighting #MEcfs #EndMEcfs
#MEAction #MillionsMissing #TeachMETreatME #pwME
We need good health care, up-to-date medical education and immediate research funding!
I have suffered from ME/CFS since 2009.
#StandByMEcfs #StillSickStillFighting #MEcfs #EndMEcfs
#MEAction #MillionsMissing #TeachMETreatME #pwME
I am celebrating my birthday by making a donation to @meactnet.bsky.social to keep the struggle going in these difficult times. Here’s how to join me in supporting this essential work.
www.meaction.net/lantern-in-t...
www.meaction.net/lantern-in-t...
BE A LANTERN IN THE DARKNESS | #MEAction
Be the light by helping #MEAction raise $150,000 by December 31st. We have a $50,000 matching donation so your dollars go further!
www.meaction.net
November 12, 2025 at 8:45 PM
I am celebrating my birthday by making a donation to @meactnet.bsky.social to keep the struggle going in these difficult times. Here’s how to join me in supporting this essential work.
www.meaction.net/lantern-in-t...
www.meaction.net/lantern-in-t...
This #MillionsMissing, we are #FrailAndFurious!
Injustices are happening worldwide because ME is not taken with the seriousness we deserve.
Let's come together to show the world how devastating this disease is.
Join the fight: millionsmissing.org
#pwME #LongCovid #MECFS
Injustices are happening worldwide because ME is not taken with the seriousness we deserve.
Let's come together to show the world how devastating this disease is.
Join the fight: millionsmissing.org
#pwME #LongCovid #MECFS
April 2, 2026 at 12:00 AM
This #MillionsMissing, we are #FrailAndFurious!
Injustices are happening worldwide because ME is not taken with the seriousness we deserve.
Let's come together to show the world how devastating this disease is.
Join the fight: millionsmissing.org
#pwME #LongCovid #MECFS
Injustices are happening worldwide because ME is not taken with the seriousness we deserve.
Let's come together to show the world how devastating this disease is.
Join the fight: millionsmissing.org
#pwME #LongCovid #MECFS
Announcing #MillionsMissing 2025 on May 12th!
#MEAction is organizing a community-wide protest to send out an SOS to our elected officials: Save our Support Systems. Save our Science. Save Our Society. Learn more here: www.meaction.net/2025/04/02/m...
#pwME #MECFS #LongCovid #disability
#MEAction is organizing a community-wide protest to send out an SOS to our elected officials: Save our Support Systems. Save our Science. Save Our Society. Learn more here: www.meaction.net/2025/04/02/m...
#pwME #MECFS #LongCovid #disability
#MillionsMissing 2025: Sending Out An SOS
For #MillionsMissing 2024, #MEAction is sending out an SOS.
www.meaction.net
April 3, 2025 at 4:37 PM
Announcing #MillionsMissing 2025 on May 12th!
#MEAction is organizing a community-wide protest to send out an SOS to our elected officials: Save our Support Systems. Save our Science. Save Our Society. Learn more here: www.meaction.net/2025/04/02/m...
#pwME #MECFS #LongCovid #disability
#MEAction is organizing a community-wide protest to send out an SOS to our elected officials: Save our Support Systems. Save our Science. Save Our Society. Learn more here: www.meaction.net/2025/04/02/m...
#pwME #MECFS #LongCovid #disability
We are excited to announce that #MEAction has secured a meeting with the NIH Director, Dr. Bhattacharya, on May 13th to discuss the implementation plan and funding for the NIH ME/CFS Research Roadmap.
Thank you to all who signed our letter!
https://ow.ly/7hFO50YJ0m9
#pwME #MECFS #NIH
Thank you to all who signed our letter!
https://ow.ly/7hFO50YJ0m9
#pwME #MECFS #NIH
April 14, 2026 at 6:05 PM
We are excited to announce that #MEAction has secured a meeting with the NIH Director, Dr. Bhattacharya, on May 13th to discuss the implementation plan and funding for the NIH ME/CFS Research Roadmap.
Thank you to all who signed our letter!
https://ow.ly/7hFO50YJ0m9
#pwME #MECFS #NIH
Thank you to all who signed our letter!
https://ow.ly/7hFO50YJ0m9
#pwME #MECFS #NIH
May 12, 2025 at 5:23 PM