#MEAction Network
@meactnet.bsky.social
A global network of people empowering one another to fight for equity for myalgic encephalomyelitis. Home of the #MillionsMissing linktr.ee/meactnet
#pwME #MyalgicEncephalomyelitis #LongCovid #MECFS #ChronicIllness #DisabilityJustice
#pwME #MyalgicEncephalomyelitis #LongCovid #MECFS #ChronicIllness #DisabilityJustice
Pinned
New Medicaid work requirements will take effect at the end of 2026 - it will FAIL sick people and cut off their care.
Tell HHS to recognize people with #MECFS and #LongCOVID as “medically frail” so our access to Medicaid is protected.
SIGN THE LETTER: actionnetwork.org/petitions/fr...
Tell HHS to recognize people with #MECFS and #LongCOVID as “medically frail” so our access to Medicaid is protected.
SIGN THE LETTER: actionnetwork.org/petitions/fr...
Reposted by #MEAction Network
Enter our giveaways by Dec. 31st! Keep sharing our fundraiser to help us reach new rewards!
We Should All Be Birds by Brain Buckbee & Grief is Love by Marisa Renee Lee. https://ow.ly/6YxO50XMJu5
Visible https://ow.ly/BaTG50XMJu4
#pwME #MyalgicE #spoonie #MECFS #book #spoonie
We Should All Be Birds by Brain Buckbee & Grief is Love by Marisa Renee Lee. https://ow.ly/6YxO50XMJu5
Visible https://ow.ly/BaTG50XMJu4
#pwME #MyalgicE #spoonie #MECFS #book #spoonie
December 23, 2025 at 5:01 PM
Enter our giveaways by Dec. 31st! Keep sharing our fundraiser to help us reach new rewards!
We Should All Be Birds by Brain Buckbee & Grief is Love by Marisa Renee Lee. https://ow.ly/6YxO50XMJu5
Visible https://ow.ly/BaTG50XMJu4
#pwME #MyalgicE #spoonie #MECFS #book #spoonie
We Should All Be Birds by Brain Buckbee & Grief is Love by Marisa Renee Lee. https://ow.ly/6YxO50XMJu5
Visible https://ow.ly/BaTG50XMJu4
#pwME #MyalgicE #spoonie #MECFS #book #spoonie
Maybe have a little holiday money you are wanting to spend? We have so many amazing designs in our store! We have hoodies, tees, joggers, totes, mugs, and more! You get a great item to remind you of the love of your community and you support #MEAction! https://www.bonfire.com/store/meaction-1/
December 26, 2025 at 5:00 PM
Maybe have a little holiday money you are wanting to spend? We have so many amazing designs in our store! We have hoodies, tees, joggers, totes, mugs, and more! You get a great item to remind you of the love of your community and you support #MEAction! https://www.bonfire.com/store/meaction-1/
Enter our giveaways by Dec. 31st! Keep sharing our fundraiser to help us reach new rewards!
We Should All Be Birds by Brain Buckbee & Grief is Love by Marisa Renee Lee. https://ow.ly/6YxO50XMJu5
Visible https://ow.ly/BaTG50XMJu4
#pwME #MyalgicE #spoonie #MECFS #book #spoonie
We Should All Be Birds by Brain Buckbee & Grief is Love by Marisa Renee Lee. https://ow.ly/6YxO50XMJu5
Visible https://ow.ly/BaTG50XMJu4
#pwME #MyalgicE #spoonie #MECFS #book #spoonie
December 23, 2025 at 5:01 PM
Enter our giveaways by Dec. 31st! Keep sharing our fundraiser to help us reach new rewards!
We Should All Be Birds by Brain Buckbee & Grief is Love by Marisa Renee Lee. https://ow.ly/6YxO50XMJu5
Visible https://ow.ly/BaTG50XMJu4
#pwME #MyalgicE #spoonie #MECFS #book #spoonie
We Should All Be Birds by Brain Buckbee & Grief is Love by Marisa Renee Lee. https://ow.ly/6YxO50XMJu5
Visible https://ow.ly/BaTG50XMJu4
#pwME #MyalgicE #spoonie #MECFS #book #spoonie
Can you sign & share our letter to HHS? freakinfrail.org
Thank you to the 1600 who have signed!
Congress has mandated that Medicaid recipients work 80 hours a month unless they can prove they are “medically frail." We want to protect Medicaid access for #pwME & #pwLC.
Thank you to the 1600 who have signed!
Congress has mandated that Medicaid recipients work 80 hours a month unless they can prove they are “medically frail." We want to protect Medicaid access for #pwME & #pwLC.
December 22, 2025 at 5:01 PM
Can you sign & share our letter to HHS? freakinfrail.org
Thank you to the 1600 who have signed!
Congress has mandated that Medicaid recipients work 80 hours a month unless they can prove they are “medically frail." We want to protect Medicaid access for #pwME & #pwLC.
Thank you to the 1600 who have signed!
Congress has mandated that Medicaid recipients work 80 hours a month unless they can prove they are “medically frail." We want to protect Medicaid access for #pwME & #pwLC.
Happy Holidays from #MEAction! We wish you safety, peace, & hope this holiday season! Whatever holidays you are celebrating, please take care & know that a whole community surrounds you in love!
We will be lightening our load for the next 2 weeks but you will still see a few things from us!
We will be lightening our load for the next 2 weeks but you will still see a few things from us!
December 21, 2025 at 5:00 PM
Happy Holidays from #MEAction! We wish you safety, peace, & hope this holiday season! Whatever holidays you are celebrating, please take care & know that a whole community surrounds you in love!
We will be lightening our load for the next 2 weeks but you will still see a few things from us!
We will be lightening our load for the next 2 weeks but you will still see a few things from us!
We reached a new fundraising level- releasing a NEW community resource for those who are applying for Medicaid & preparing for home assessment. https://ow.ly/MrbU50XLJqi
Plus a bonus video talking us through the basics of getting home care with Medicaid!
Keep sharing!
Plus a bonus video talking us through the basics of getting home care with Medicaid!
Keep sharing!
December 19, 2025 at 5:01 PM
We reached a new fundraising level- releasing a NEW community resource for those who are applying for Medicaid & preparing for home assessment. https://ow.ly/MrbU50XLJqi
Plus a bonus video talking us through the basics of getting home care with Medicaid!
Keep sharing!
Plus a bonus video talking us through the basics of getting home care with Medicaid!
Keep sharing!
Martin Keogh of Pillow Writers shares "It's Like Amnesia" - a piece included in Near- Life Experiences: The Pillow Writers Anthology, Issue 2.
Pillow Writers has two anthologies available! Proceeds benefit #MEAction https://ow.ly/A4kL50XLBO5
#pwME #book #Spoonie #MECFS
Pillow Writers has two anthologies available! Proceeds benefit #MEAction https://ow.ly/A4kL50XLBO5
#pwME #book #Spoonie #MECFS
December 19, 2025 at 1:01 AM
Martin Keogh of Pillow Writers shares "It's Like Amnesia" - a piece included in Near- Life Experiences: The Pillow Writers Anthology, Issue 2.
Pillow Writers has two anthologies available! Proceeds benefit #MEAction https://ow.ly/A4kL50XLBO5
#pwME #book #Spoonie #MECFS
Pillow Writers has two anthologies available! Proceeds benefit #MEAction https://ow.ly/A4kL50XLBO5
#pwME #book #Spoonie #MECFS
The Health Resources and Service Administration (HRSA) has issued a proposal to stop tracking Long COVID at community health centers - making it much more difficult to track trends and identify disparities in access, diagnosis, and treatment in community health.
MEAction comment:
ow.ly/4z1j50XLH4i
MEAction comment:
ow.ly/4z1j50XLH4i
December 18, 2025 at 8:23 PM
The Health Resources and Service Administration (HRSA) has issued a proposal to stop tracking Long COVID at community health centers - making it much more difficult to track trends and identify disparities in access, diagnosis, and treatment in community health.
MEAction comment:
ow.ly/4z1j50XLH4i
MEAction comment:
ow.ly/4z1j50XLH4i
Anyone attempting any holiday baking? We have some great tips for those wanting to attempt to keep this holiday tradition - just modifying it as best you can for spoonies!
We share lots of helpful holiday tips here: https://ow.ly/8wVH50XLaCX
#pwME #Spoonie #MECFS #Holiday
We share lots of helpful holiday tips here: https://ow.ly/8wVH50XLaCX
#pwME #Spoonie #MECFS #Holiday
December 18, 2025 at 3:01 PM
Anyone attempting any holiday baking? We have some great tips for those wanting to attempt to keep this holiday tradition - just modifying it as best you can for spoonies!
We share lots of helpful holiday tips here: https://ow.ly/8wVH50XLaCX
#pwME #Spoonie #MECFS #Holiday
We share lots of helpful holiday tips here: https://ow.ly/8wVH50XLaCX
#pwME #Spoonie #MECFS #Holiday
Reposted by #MEAction Network
For people with #ChronicIllness who are feeling extra pressure to perform during the holidays, or who wish they could take part but can't because of #MECFS or #longCOVID.
ow.ly/9yzS50XKzMq
ow.ly/9yzS50XKzMq
December 17, 2025 at 11:30 PM
For people with #ChronicIllness who are feeling extra pressure to perform during the holidays, or who wish they could take part but can't because of #MECFS or #longCOVID.
ow.ly/9yzS50XKzMq
ow.ly/9yzS50XKzMq
We have a wonderful guided meditation free for you from Stuart Murdoch (of Belle & Sebastian)! https://ow.ly/9yzS50XKzMq
We have uploaded it above so you can watch/listen with no ads. A huge thank you to Stuart for this!
#Meditation #PwME #MyalgicE
We have uploaded it above so you can watch/listen with no ads. A huge thank you to Stuart for this!
#Meditation #PwME #MyalgicE
December 17, 2025 at 9:00 PM
We have a wonderful guided meditation free for you from Stuart Murdoch (of Belle & Sebastian)! https://ow.ly/9yzS50XKzMq
We have uploaded it above so you can watch/listen with no ads. A huge thank you to Stuart for this!
#Meditation #PwME #MyalgicE
We have uploaded it above so you can watch/listen with no ads. A huge thank you to Stuart for this!
#Meditation #PwME #MyalgicE
We have an AMAZING AMAZING reward for you today!
Because we have reached $50k in fundraising, we can give away 50 refurbished Visible bands with a 3 month membership!!!!
Thank you to Visible for helping us make this happen!
Register (US UK Canada only): forms.gle/VdQSz8gesa87...
#pwME #MECFS
Because we have reached $50k in fundraising, we can give away 50 refurbished Visible bands with a 3 month membership!!!!
Thank you to Visible for helping us make this happen!
Register (US UK Canada only): forms.gle/VdQSz8gesa87...
#pwME #MECFS
December 17, 2025 at 5:01 PM
We have an AMAZING AMAZING reward for you today!
Because we have reached $50k in fundraising, we can give away 50 refurbished Visible bands with a 3 month membership!!!!
Thank you to Visible for helping us make this happen!
Register (US UK Canada only): forms.gle/VdQSz8gesa87...
#pwME #MECFS
Because we have reached $50k in fundraising, we can give away 50 refurbished Visible bands with a 3 month membership!!!!
Thank you to Visible for helping us make this happen!
Register (US UK Canada only): forms.gle/VdQSz8gesa87...
#pwME #MECFS
Reposted by #MEAction Network
Wow! We're at over 100 registrants for today's talk.
Thanks so much for your interest, and looking forward to seeing you there!
Thanks so much for your interest, and looking forward to seeing you there!
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 17, 2025 at 1:01 PM
Wow! We're at over 100 registrants for today's talk.
Thanks so much for your interest, and looking forward to seeing you there!
Thanks so much for your interest, and looking forward to seeing you there!
We have a new video ready to watch! Check out our interview with Marisa Renee Lee about her book, Grief is Love. https://youtu.be/ax36XTkb1uA
We have a book giveaway until Dec. 31. Enter to win in audio or ebook format if you live in the US, Canada, or UK: https://forms.gle/xwAZNAcK1J2dqud66
We have a book giveaway until Dec. 31. Enter to win in audio or ebook format if you live in the US, Canada, or UK: https://forms.gle/xwAZNAcK1J2dqud66
December 17, 2025 at 1:00 AM
We have a new video ready to watch! Check out our interview with Marisa Renee Lee about her book, Grief is Love. https://youtu.be/ax36XTkb1uA
We have a book giveaway until Dec. 31. Enter to win in audio or ebook format if you live in the US, Canada, or UK: https://forms.gle/xwAZNAcK1J2dqud66
We have a book giveaway until Dec. 31. Enter to win in audio or ebook format if you live in the US, Canada, or UK: https://forms.gle/xwAZNAcK1J2dqud66
Alice Wong embodied the fight for independent living, supports and empowerment for disabled people. As #MEAction embarks on a fight to protect Medicaid for our community, we carry the legacy of Wong with us.
Read a tribute to Wong here: bit.ly/3KVEo8n
#DisabilityVisibility
Read a tribute to Wong here: bit.ly/3KVEo8n
#DisabilityVisibility
December 17, 2025 at 12:32 AM
Alice Wong embodied the fight for independent living, supports and empowerment for disabled people. As #MEAction embarks on a fight to protect Medicaid for our community, we carry the legacy of Wong with us.
Read a tribute to Wong here: bit.ly/3KVEo8n
#DisabilityVisibility
Read a tribute to Wong here: bit.ly/3KVEo8n
#DisabilityVisibility
Reposted by #MEAction Network
Wow, 75 of you so far!
It's not too late to register for this talk tomorrow, which is sliding scale, pay-as-you're-able. 20% of proceeds will go to #MEAction.
Click on the post below to learn more!
It's not too late to register for this talk tomorrow, which is sliding scale, pay-as-you're-able. 20% of proceeds will go to #MEAction.
Click on the post below to learn more!
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 16, 2025 at 2:21 PM
Wow, 75 of you so far!
It's not too late to register for this talk tomorrow, which is sliding scale, pay-as-you're-able. 20% of proceeds will go to #MEAction.
Click on the post below to learn more!
It's not too late to register for this talk tomorrow, which is sliding scale, pay-as-you're-able. 20% of proceeds will go to #MEAction.
Click on the post below to learn more!
Our Advocacy Director, Ben HsuBorger, shares why the #FreakinFrail campaign is so important - even if you’re not on #Medicaid freakingfrail.org
Our letter to HHS Secretary is step one. Next step will be at the state level. We need your solidarity to make this happen.
Our letter to HHS Secretary is step one. Next step will be at the state level. We need your solidarity to make this happen.
December 16, 2025 at 5:02 PM
Our Advocacy Director, Ben HsuBorger, shares why the #FreakinFrail campaign is so important - even if you’re not on #Medicaid freakingfrail.org
Our letter to HHS Secretary is step one. Next step will be at the state level. We need your solidarity to make this happen.
Our letter to HHS Secretary is step one. Next step will be at the state level. We need your solidarity to make this happen.
Reposted by #MEAction Network
I have a not-updated-in-forever merch shop! But the most ME related item (that I'm also super proud of) is the rage resting blanket. Rest is so important but we don't always have to be happy about it.
rhapsperhaps-shop.fourthwall.com/products/rha...
rhapsperhaps-shop.fourthwall.com/products/rha...
Rhaps Rage Resting Blanket
Are you forced to rest, often against your own will? Are you mad about it? Welcome to rage resting. We rest because we must, but that doesn't mean we're happy about it.
Inspired by a sticky note dood...
rhapsperhaps-shop.fourthwall.com
December 16, 2025 at 3:37 PM
I have a not-updated-in-forever merch shop! But the most ME related item (that I'm also super proud of) is the rage resting blanket. Rest is so important but we don't always have to be happy about it.
rhapsperhaps-shop.fourthwall.com/products/rha...
rhapsperhaps-shop.fourthwall.com/products/rha...
Reposted by #MEAction Network
Share your shop! All community members are welcome to share a link or tag their shops in this thread.
Whatever holiday you are celebrating this time of year, you are welcome to join in and do a little gift shopping or selling!
#pwME #MECFS #LongCovid #MyalgicE #Holiday
Whatever holiday you are celebrating this time of year, you are welcome to join in and do a little gift shopping or selling!
#pwME #MECFS #LongCovid #MyalgicE #Holiday
December 15, 2025 at 4:31 PM
New video available! #MEAction’s Shalida Dobbins interviews author Brian Buckbee about his book, We Should All Be Birds. https://ow.ly/194q50XK35U
Reminder: Audio or ebook giveaway! Must be in US, Canada, or UK. Fill in form by Dec. 31: https://ow.ly/CJkc50XK35V
#pwME #LongCovid
Reminder: Audio or ebook giveaway! Must be in US, Canada, or UK. Fill in form by Dec. 31: https://ow.ly/CJkc50XK35V
#pwME #LongCovid
December 16, 2025 at 1:00 AM
New video available! #MEAction’s Shalida Dobbins interviews author Brian Buckbee about his book, We Should All Be Birds. https://ow.ly/194q50XK35U
Reminder: Audio or ebook giveaway! Must be in US, Canada, or UK. Fill in form by Dec. 31: https://ow.ly/CJkc50XK35V
#pwME #LongCovid
Reminder: Audio or ebook giveaway! Must be in US, Canada, or UK. Fill in form by Dec. 31: https://ow.ly/CJkc50XK35V
#pwME #LongCovid
Our Scientific Director, Jaime Seltzer @exceedhergrasp1.bsky.social, is giving a talk on Dec. 17 at 12 pm ET: Improving Quality of Life in ME/CFS & Infection-Associated Chronic Conditions. Register: us06web.zoom.us/meeting/regi...
Available on a donate as you're able basis & 20% goes to #MEAction.
Available on a donate as you're able basis & 20% goes to #MEAction.
December 15, 2025 at 5:54 PM
Our Scientific Director, Jaime Seltzer @exceedhergrasp1.bsky.social, is giving a talk on Dec. 17 at 12 pm ET: Improving Quality of Life in ME/CFS & Infection-Associated Chronic Conditions. Register: us06web.zoom.us/meeting/regi...
Available on a donate as you're able basis & 20% goes to #MEAction.
Available on a donate as you're able basis & 20% goes to #MEAction.
Reposted by #MEAction Network
Thank you kindly. This is my art store: fineartamerica.com/profiles/tin...
December 15, 2025 at 7:48 AM
Thank you kindly. This is my art store: fineartamerica.com/profiles/tin...
Reposted by #MEAction Network
Dynamically Disabled tees for all chronic illnesses. Contact me if you don’t see yours and I can add it.
dynamically-disabled.printify.me
dynamically-disabled.printify.me
Discover Our Exclusive Range at Dynamically Disabled
Store of Dynamically Disabled.
dynamically-disabled.printify.me
December 14, 2025 at 11:05 PM
Dynamically Disabled tees for all chronic illnesses. Contact me if you don’t see yours and I can add it.
dynamically-disabled.printify.me
dynamically-disabled.printify.me
Reposted by #MEAction Network
Reposted by #MEAction Network
Ooh - my book, in paperback, ebook, and audio! Available widely (bookshop, Barnes and noble, kobo, librofm, etc) but I’m linking Amazon bc all three formats are there together:
Lift the Mask: a short collection of poetry and lyrical prose
Lift the Mask: a short collection of poetry and lyrical prose - Kindle edition by Houlihan, Kristin. Download it once and read it on your Kindle device, PC, phones or tablets. Use features like bookmarks, note taking and highlighting while reading Lift the Mask: a short collection of poetry and lyrical prose.
www.amazon.com
December 14, 2025 at 10:30 PM
Ooh - my book, in paperback, ebook, and audio! Available widely (bookshop, Barnes and noble, kobo, librofm, etc) but I’m linking Amazon bc all three formats are there together: