#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
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...
To celebrate Family Caregivers Month, we’re unveiling brand-new shirts, sweatshirts, & mugs — created by caregivers for our community!
Our community came together — caregivers, volunteers, designers, friends — to create these items! Find them here: www.bonfire.com/store/meacti...
#InvisibleIllness
Our community came together — caregivers, volunteers, designers, friends — to create these items! Find them here: www.bonfire.com/store/meacti...
#InvisibleIllness
November 25, 2025 at 7:12 PM
To celebrate Family Caregivers Month, we’re unveiling brand-new shirts, sweatshirts, & mugs — created by caregivers for our community!
Our community came together — caregivers, volunteers, designers, friends — to create these items! Find them here: www.bonfire.com/store/meacti...
#InvisibleIllness
Our community came together — caregivers, volunteers, designers, friends — to create these items! Find them here: www.bonfire.com/store/meacti...
#InvisibleIllness
Light Up A Lantern!
Everyone who gives $50+ to #MEAction fundraiser will have the ability to list a name on a lantern. You may light up a lantern in honor or in memory of someone else.
And, your donation will be DOUBLED thanks to a matching donation!
www.meaction.net/donate
Everyone who gives $50+ to #MEAction fundraiser will have the ability to list a name on a lantern. You may light up a lantern in honor or in memory of someone else.
And, your donation will be DOUBLED thanks to a matching donation!
www.meaction.net/donate
November 25, 2025 at 6:43 PM
Light Up A Lantern!
Everyone who gives $50+ to #MEAction fundraiser will have the ability to list a name on a lantern. You may light up a lantern in honor or in memory of someone else.
And, your donation will be DOUBLED thanks to a matching donation!
www.meaction.net/donate
Everyone who gives $50+ to #MEAction fundraiser will have the ability to list a name on a lantern. You may light up a lantern in honor or in memory of someone else.
And, your donation will be DOUBLED thanks to a matching donation!
www.meaction.net/donate
Reposted by #MEAction Network
“People who are performing these studies are extraordinarily ignorant, and their ignorance is dangerous,” Seltzer said.
Read the full article here:
bit.ly/4p4uAbg
Read the full article here:
bit.ly/4p4uAbg
Less than 20% of Long COVID trials involving exercise even mention post-exertional malaise - The Sick Times
An analysis by The Sick Times find that less than 15% of Long COVID clinical trials testing the benefits of exercise or cardiopulmonary rehabilitation measured post-exertional malaise, according to th...
bit.ly
November 24, 2025 at 10:12 PM
“People who are performing these studies are extraordinarily ignorant, and their ignorance is dangerous,” Seltzer said.
Read the full article here:
bit.ly/4p4uAbg
Read the full article here:
bit.ly/4p4uAbg
Reposted by #MEAction Network
I wrote recently about my experience with post-exertional malaise #PEM. Last year, I tried graded exercise therapy and it put me into a #PEMCrash that lasted for months. The physical therapist that “has worked with many #LongCovid #MECFS patients” had this mindset.
substack.com/home/post/p-...
substack.com/home/post/p-...
November 24, 2025 at 11:30 PM
I wrote recently about my experience with post-exertional malaise #PEM. Last year, I tried graded exercise therapy and it put me into a #PEMCrash that lasted for months. The physical therapist that “has worked with many #LongCovid #MECFS patients” had this mindset.
substack.com/home/post/p-...
substack.com/home/post/p-...
The majority of Long COVID research investigating exercise benefits completely ignores post-exertional malaise (PEM) - one of the core symptoms of #LongCOVID.
An analysis by @thesicktimes.org showed that less than 20% of Long COVID trials involving exercise even mention PEM.
An analysis by @thesicktimes.org showed that less than 20% of Long COVID trials involving exercise even mention PEM.
November 24, 2025 at 10:12 PM
The majority of Long COVID research investigating exercise benefits completely ignores post-exertional malaise (PEM) - one of the core symptoms of #LongCOVID.
An analysis by @thesicktimes.org showed that less than 20% of Long COVID trials involving exercise even mention PEM.
An analysis by @thesicktimes.org showed that less than 20% of Long COVID trials involving exercise even mention PEM.
Reposted by #MEAction Network
Don’t miss this informative workshop today!
My daughter became ill with ME/CFS back in high school. I can’t express how important a workshop like this would have been for me as my family faced so many decisions about supporting her through this life-crushing illness.
Caregivers - join in today!
My daughter became ill with ME/CFS back in high school. I can’t express how important a workshop like this would have been for me as my family faced so many decisions about supporting her through this life-crushing illness.
Caregivers - join in today!
Our workshop "Chronic Illness Caregiving for Youth, Teen, and Adult Children" with Denise Lopez-Majano is this Saturday - November 22nd at 3 pm ET! Get your ticket now: ow.ly/3IcV50XlbZh
All caregivers welcome! New to caregiving or a veteran at it, there is something for you!
#caregiver
All caregivers welcome! New to caregiving or a veteran at it, there is something for you!
#caregiver
November 22, 2025 at 4:23 PM
Don’t miss this informative workshop today!
My daughter became ill with ME/CFS back in high school. I can’t express how important a workshop like this would have been for me as my family faced so many decisions about supporting her through this life-crushing illness.
Caregivers - join in today!
My daughter became ill with ME/CFS back in high school. I can’t express how important a workshop like this would have been for me as my family faced so many decisions about supporting her through this life-crushing illness.
Caregivers - join in today!
This is today!
Our workshop "Chronic Illness Caregiving for Youth, Teen, and Adult Children" with Denise Lopez-Majano is this Saturday - November 22nd at 3 pm ET! Get your ticket now: ow.ly/3IcV50XlbZh
All caregivers welcome! New to caregiving or a veteran at it, there is something for you!
#caregiver
All caregivers welcome! New to caregiving or a veteran at it, there is something for you!
#caregiver
November 22, 2025 at 5:03 PM
This is today!
Clinical trials are under attack from the Trump administration.
@washingtonpost.com reported on a new JAMA paper that shows grants for 383 clinical trials were terminated from the end of February to August, affecting more than 74,000 trial participants.
@allysonchiu.bsky.social
@washingtonpost.com reported on a new JAMA paper that shows grants for 383 clinical trials were terminated from the end of February to August, affecting more than 74,000 trial participants.
@allysonchiu.bsky.social
November 21, 2025 at 7:13 PM
Clinical trials are under attack from the Trump administration.
@washingtonpost.com reported on a new JAMA paper that shows grants for 383 clinical trials were terminated from the end of February to August, affecting more than 74,000 trial participants.
@allysonchiu.bsky.social
@washingtonpost.com reported on a new JAMA paper that shows grants for 383 clinical trials were terminated from the end of February to August, affecting more than 74,000 trial participants.
@allysonchiu.bsky.social
Reposted by #MEAction Network
The rationale behind these studies, Seltzer contests, is [that] “it presumes that the patient had never heard of exercise until a doctor told them [it] exists.”
Thanks to Simon Spichak for putting this idea into print. I've said multiple times in interviews that it's the strangest part... 🧵
Thanks to Simon Spichak for putting this idea into print. I've said multiple times in interviews that it's the strangest part... 🧵
“People who are performing these studies are extraordinarily ignorant, and their ignorance is dangerous,” said @exceedhergrasp1.bsky.social. She and other experts agree these trials are a waste of $$ and will not advance our biological understanding of Long COVID. thesicktimes.org/2025/11/21/l...
Less than 20% of Long COVID trials involving exercise even mention post-exertional malaise - The Sick Times
An analysis by The Sick Times find that less than 15% of Long COVID clinical trials testing the benefits of exercise or cardiopulmonary rehabilitation measured post-exertional malaise, according to th...
thesicktimes.org
November 21, 2025 at 3:56 PM
The rationale behind these studies, Seltzer contests, is [that] “it presumes that the patient had never heard of exercise until a doctor told them [it] exists.”
Thanks to Simon Spichak for putting this idea into print. I've said multiple times in interviews that it's the strangest part... 🧵
Thanks to Simon Spichak for putting this idea into print. I've said multiple times in interviews that it's the strangest part... 🧵
#MEAction has been working hard this year to be a lantern in the darkness. We have had some wins, moments that stood out, and times where this community made a difference. See our list: www.meaction.net/post/meactio...
We need your support. Your gift will be matched up to $50k!
#pwME #pwLC #MECFS
We need your support. Your gift will be matched up to $50k!
#pwME #pwLC #MECFS
#MEAction's Top 10 Accomplishments of 2025
This year has been hard- we know because we have been on the ground fighting for ME and Long COVID every single day. In 2025, #MEAction has accomplished a lot. Just take a look below.1. Advocating for...
www.meaction.net
November 20, 2025 at 7:49 PM
#MEAction has been working hard this year to be a lantern in the darkness. We have had some wins, moments that stood out, and times where this community made a difference. See our list: www.meaction.net/post/meactio...
We need your support. Your gift will be matched up to $50k!
#pwME #pwLC #MECFS
We need your support. Your gift will be matched up to $50k!
#pwME #pwLC #MECFS
Our workshop "Chronic Illness Caregiving for Youth, Teen, and Adult Children" with Denise Lopez-Majano is this Saturday - November 22nd at 3 pm ET! Get your ticket now: ow.ly/3IcV50XlbZh
All caregivers welcome! New to caregiving or a veteran at it, there is something for you!
#caregiver
All caregivers welcome! New to caregiving or a veteran at it, there is something for you!
#caregiver
November 20, 2025 at 6:23 PM
Our workshop "Chronic Illness Caregiving for Youth, Teen, and Adult Children" with Denise Lopez-Majano is this Saturday - November 22nd at 3 pm ET! Get your ticket now: ow.ly/3IcV50XlbZh
All caregivers welcome! New to caregiving or a veteran at it, there is something for you!
#caregiver
All caregivers welcome! New to caregiving or a veteran at it, there is something for you!
#caregiver
Call to action: Congress has extended Telehealth until January 31,2026.
This is NOT a permanent solution. So, we must continue to put pressure on Congress to make telehealth for Medicare permanent.
Call now using our call script: www.meaction.net/telehealth
#Telehealth #PwME #MECFS #LongCovid
This is NOT a permanent solution. So, we must continue to put pressure on Congress to make telehealth for Medicare permanent.
Call now using our call script: www.meaction.net/telehealth
#Telehealth #PwME #MECFS #LongCovid
November 19, 2025 at 9:27 PM
Call to action: Congress has extended Telehealth until January 31,2026.
This is NOT a permanent solution. So, we must continue to put pressure on Congress to make telehealth for Medicare permanent.
Call now using our call script: www.meaction.net/telehealth
#Telehealth #PwME #MECFS #LongCovid
This is NOT a permanent solution. So, we must continue to put pressure on Congress to make telehealth for Medicare permanent.
Call now using our call script: www.meaction.net/telehealth
#Telehealth #PwME #MECFS #LongCovid
As a community-centered & disability-led organization, #MEAction’s strength lies in the choices we make that shape programs long before launch. It is these decisions that allow us to continue to serve you as a light for this community.
Learn more:
www.meaction.net/post/inside-...
Learn more:
www.meaction.net/post/inside-...
November 19, 2025 at 5:09 PM
As a community-centered & disability-led organization, #MEAction’s strength lies in the choices we make that shape programs long before launch. It is these decisions that allow us to continue to serve you as a light for this community.
Learn more:
www.meaction.net/post/inside-...
Learn more:
www.meaction.net/post/inside-...
Do you have a family caregiver in your life? Want to tell them thanks and show your appreciation? We created some images you are welcome to save and share throughout the year with the caregivers in your life! It can be for your caregiver or for a friend who is caregiving.
#FamilyCaregiver #pwME
#FamilyCaregiver #pwME
November 18, 2025 at 5:24 PM
Do you have a family caregiver in your life? Want to tell them thanks and show your appreciation? We created some images you are welcome to save and share throughout the year with the caregivers in your life! It can be for your caregiver or for a friend who is caregiving.
#FamilyCaregiver #pwME
#FamilyCaregiver #pwME
November is Native American and Alaska Native Heritage Month.
It is ALWAYS important for us to be listening and learning from Indigenous and native voices. We are sharing some resources to help.
PBS has a selection of documentaries for those able to watch videos. ow.ly/9UAI50Xt6Kh
It is ALWAYS important for us to be listening and learning from Indigenous and native voices. We are sharing some resources to help.
PBS has a selection of documentaries for those able to watch videos. ow.ly/9UAI50Xt6Kh
What to Watch: Celebrate Native American Heritage Month | PBS
What to watch to celebrate Native American Heritage Month. Explore documentaries and programs from Indigenous and native storytellers.
ow.ly
November 17, 2025 at 11:28 PM
November is Native American and Alaska Native Heritage Month.
It is ALWAYS important for us to be listening and learning from Indigenous and native voices. We are sharing some resources to help.
PBS has a selection of documentaries for those able to watch videos. ow.ly/9UAI50Xt6Kh
It is ALWAYS important for us to be listening and learning from Indigenous and native voices. We are sharing some resources to help.
PBS has a selection of documentaries for those able to watch videos. ow.ly/9UAI50Xt6Kh
Starting soon! Top 10 Lessons from 20 Years of Caregiving Workshop with Kim Moy www.eventbrite.com/e/top-10-les...
November 16, 2025 at 7:02 PM
Starting soon! Top 10 Lessons from 20 Years of Caregiving Workshop with Kim Moy www.eventbrite.com/e/top-10-les...
We have been asked to share this fundraiser for Rich, a #pwME and
three other rare and serious conditions who is in need of help funding treatment. Please see details below!
Fundraiser sharing policy: docs.google.com/document/d/1...
#MyalgicEncephalomyelitis #MECFS
three other rare and serious conditions who is in need of help funding treatment. Please see details below!
Fundraiser sharing policy: docs.google.com/document/d/1...
#MyalgicEncephalomyelitis #MECFS
Please help my friend @talmandaniel.bsky.social help his friend Rich who needs life-saving help with his highly unusual combination of medical conditions. www.gofundme.com/f/Help-Me-Ge...
This is OVER SEVENTY PERCENT FUNDED! Your dollar could really save a life here
This is OVER SEVENTY PERCENT FUNDED! Your dollar could really save a life here
November 15, 2025 at 9:18 PM
We have been asked to share this fundraiser for Rich, a #pwME and
three other rare and serious conditions who is in need of help funding treatment. Please see details below!
Fundraiser sharing policy: docs.google.com/document/d/1...
#MyalgicEncephalomyelitis #MECFS
three other rare and serious conditions who is in need of help funding treatment. Please see details below!
Fundraiser sharing policy: docs.google.com/document/d/1...
#MyalgicEncephalomyelitis #MECFS
Join us TOMORROW - Nov. 16 at 3 pm ET for a workshop for caregivers: Top 10 Lessons from 20 Years of Caregiving by Kim Moy. ow.ly/gtAP50XlbZb
Do not miss our 2nd workshop especially for parent caregivers coming Nov. 22.
#PwME #UnitedForME #Caregiver #ChronicIllness
Do not miss our 2nd workshop especially for parent caregivers coming Nov. 22.
#PwME #UnitedForME #Caregiver #ChronicIllness
November 15, 2025 at 7:55 PM
Join us TOMORROW - Nov. 16 at 3 pm ET for a workshop for caregivers: Top 10 Lessons from 20 Years of Caregiving by Kim Moy. ow.ly/gtAP50XlbZb
Do not miss our 2nd workshop especially for parent caregivers coming Nov. 22.
#PwME #UnitedForME #Caregiver #ChronicIllness
Do not miss our 2nd workshop especially for parent caregivers coming Nov. 22.
#PwME #UnitedForME #Caregiver #ChronicIllness
Reposted by #MEAction Network
As usual, @thesicktimes.org is live blogging today's PolyBio Fall 2025 Symposium, where leading Long COVID and IACC researchers will share updates on their work. Check this article throughout the day for our summaries of the presentations. thesicktimes.org/2025/11/14/l...
Live blog: PolyBio’s Fall 2025 Symposium shares Long COVID and related disease research updates - The Sick Times
Leading Long COVID and related disease researchers are set to present updates to their work today at the PolyBio Research Foundation’s Fall 2025 Symposium. PolyBio supports some of the most highly-ant...
thesicktimes.org
November 14, 2025 at 4:42 PM
As usual, @thesicktimes.org is live blogging today's PolyBio Fall 2025 Symposium, where leading Long COVID and IACC researchers will share updates on their work. Check this article throughout the day for our summaries of the presentations. thesicktimes.org/2025/11/14/l...
The Sick Times wrote an article about how community and organizations fight to advocate for #longCovid and #MECFS, even in very sick bodies.
#MEAction is featured throughout the article for our medical education work and direct action.
@thesicktimes.org
#MEAction is featured throughout the article for our medical education work and direct action.
@thesicktimes.org
November 14, 2025 at 7:07 PM
The Sick Times wrote an article about how community and organizations fight to advocate for #longCovid and #MECFS, even in very sick bodies.
#MEAction is featured throughout the article for our medical education work and direct action.
@thesicktimes.org
#MEAction is featured throughout the article for our medical education work and direct action.
@thesicktimes.org
Join our caregiver call this Saturday Nov 15th at 1:30 PM – 3:30 PM EST.
We welcome caregivers of people with chronic diseases such as myalgic encephalomyelitis (ME), Long COVID, MCAS, etc. to our calls as we connect with and support each other!
www.meaction.net/event-detail...
#caregiver
We welcome caregivers of people with chronic diseases such as myalgic encephalomyelitis (ME), Long COVID, MCAS, etc. to our calls as we connect with and support each other!
www.meaction.net/event-detail...
#caregiver
November 13, 2025 at 6:39 PM
Join our caregiver call this Saturday Nov 15th at 1:30 PM – 3:30 PM EST.
We welcome caregivers of people with chronic diseases such as myalgic encephalomyelitis (ME), Long COVID, MCAS, etc. to our calls as we connect with and support each other!
www.meaction.net/event-detail...
#caregiver
We welcome caregivers of people with chronic diseases such as myalgic encephalomyelitis (ME), Long COVID, MCAS, etc. to our calls as we connect with and support each other!
www.meaction.net/event-detail...
#caregiver
Please help us wish @wilhelminaj.bsky.social a very happy birthday!
Wilhelmina is a force in our community. We would not be where we are without her. We are truly honored and touched by her gift which will be matched!
#pwME
Wilhelmina is a force in our community. We would not be where we are without her. We are truly honored and touched by her gift which will be matched!
#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 9:39 PM
Please help us wish @wilhelminaj.bsky.social a very happy birthday!
Wilhelmina is a force in our community. We would not be where we are without her. We are truly honored and touched by her gift which will be matched!
#pwME
Wilhelmina is a force in our community. We would not be where we are without her. We are truly honored and touched by her gift which will be matched!
#pwME
Reposted by #MEAction Network
For National Family #Caregivers Month, we're partnering with Kantor & Kantor, LLP to create practical tools for caregiving in complex illness.
This week’s focus: the Employee Retirement Income Security Act (ERISA).
Download our one-pager here:
solvecfs.org/wp-content/u...
#UnitedForME
This week’s focus: the Employee Retirement Income Security Act (ERISA).
Download our one-pager here:
solvecfs.org/wp-content/u...
#UnitedForME
November 11, 2025 at 6:50 PM
For National Family #Caregivers Month, we're partnering with Kantor & Kantor, LLP to create practical tools for caregiving in complex illness.
This week’s focus: the Employee Retirement Income Security Act (ERISA).
Download our one-pager here:
solvecfs.org/wp-content/u...
#UnitedForME
This week’s focus: the Employee Retirement Income Security Act (ERISA).
Download our one-pager here:
solvecfs.org/wp-content/u...
#UnitedForME
Reposted by #MEAction Network
Some good advice on how to effectively support family #caregivers of people with ME. Caregivers are often the unsung heroes of our lives, and may perform their acts of care at great cost to themselves. 💙 #disability #MECFS #chronicillness
www.caregiverwisdom.net/post/support...
www.caregiverwisdom.net/post/support...
Have you wondered how you can help a caregiver in your life?
If you’re a caregiver, have you ever had a friend say, “Let me know how I can help,” and your mind just goes blank?
Check out Supporting Family Caregivers by Caregiver Wisdom: www.caregiverwisdom.net/post/support...
#Caregiver
If you’re a caregiver, have you ever had a friend say, “Let me know how I can help,” and your mind just goes blank?
Check out Supporting Family Caregivers by Caregiver Wisdom: www.caregiverwisdom.net/post/support...
#Caregiver
Supporting Family Caregivers: 25 Heartwarming Ways You Can Make a Difference
Have you wondered how you can help a caregiver in your life - specific, actionable ways you can help? Here are 25 thoughtful ways you can provide meaningful support to family caregivers.
www.caregiverwisdom.net
November 11, 2025 at 6:46 PM
Some good advice on how to effectively support family #caregivers of people with ME. Caregivers are often the unsung heroes of our lives, and may perform their acts of care at great cost to themselves. 💙 #disability #MECFS #chronicillness
www.caregiverwisdom.net/post/support...
www.caregiverwisdom.net/post/support...
Have you wondered how you can help a caregiver in your life?
If you’re a caregiver, have you ever had a friend say, “Let me know how I can help,” and your mind just goes blank?
Check out Supporting Family Caregivers by Caregiver Wisdom: www.caregiverwisdom.net/post/support...
#Caregiver
If you’re a caregiver, have you ever had a friend say, “Let me know how I can help,” and your mind just goes blank?
Check out Supporting Family Caregivers by Caregiver Wisdom: www.caregiverwisdom.net/post/support...
#Caregiver
Supporting Family Caregivers: 25 Heartwarming Ways You Can Make a Difference
Have you wondered how you can help a caregiver in your life - specific, actionable ways you can help? Here are 25 thoughtful ways you can provide meaningful support to family caregivers.
www.caregiverwisdom.net
November 11, 2025 at 5:49 PM
Have you wondered how you can help a caregiver in your life?
If you’re a caregiver, have you ever had a friend say, “Let me know how I can help,” and your mind just goes blank?
Check out Supporting Family Caregivers by Caregiver Wisdom: www.caregiverwisdom.net/post/support...
#Caregiver
If you’re a caregiver, have you ever had a friend say, “Let me know how I can help,” and your mind just goes blank?
Check out Supporting Family Caregivers by Caregiver Wisdom: www.caregiverwisdom.net/post/support...
#Caregiver