Bridget
@brid41.bsky.social
Chair, #MEAction Maryland
@meactmaryland.bsky.social
https://linktr.ee/meactmd
adolescent onset #MECFS, #LongCovid, #POTS, #dysautonomia, #MCAS, CPT2, #migraines, #PostHerpeticNeuralgia, #TrigeminalNeuralgia, recurrent #shingles
@meactmaryland.bsky.social
https://linktr.ee/meactmd
adolescent onset #MECFS, #LongCovid, #POTS, #dysautonomia, #MCAS, CPT2, #migraines, #PostHerpeticNeuralgia, #TrigeminalNeuralgia, recurrent #shingles
Community is caregiving.
Sending you all a virtual hug today.
I appreciate you all 💜
Sending you all a virtual hug today.
I appreciate you all 💜
November 19, 2025 at 5:01 AM
Community is caregiving.
Sending you all a virtual hug today.
I appreciate you all 💜
Sending you all a virtual hug today.
I appreciate you all 💜
Reposted by Bridget
I think the best thing I’ve ever done when it comes to my doctors’ appts is creating a FUNCAP timeline.
My husband and I sat down together and filled it out for different points in time.
It paints a clear picture of #MECFS and the dangers of post-exertional malaise.
My husband and I sat down together and filled it out for different points in time.
It paints a clear picture of #MECFS and the dangers of post-exertional malaise.
October 27, 2025 at 10:26 PM
I think the best thing I’ve ever done when it comes to my doctors’ appts is creating a FUNCAP timeline.
My husband and I sat down together and filled it out for different points in time.
It paints a clear picture of #MECFS and the dangers of post-exertional malaise.
My husband and I sat down together and filled it out for different points in time.
It paints a clear picture of #MECFS and the dangers of post-exertional malaise.
Reposted by Bridget
TeamBlueZoo's cutest member protests for Healthcare reform
Things are so scary, that no dressing up was required
Because the facts are the facts & they look dire
Affordable health care (ACA) has expired
#SaveMedicaid #ADA @meactnet.bsky.social
Things are so scary, that no dressing up was required
Because the facts are the facts & they look dire
Affordable health care (ACA) has expired
#SaveMedicaid #ADA @meactnet.bsky.social
October 31, 2025 at 7:58 PM
TeamBlueZoo's cutest member protests for Healthcare reform
Things are so scary, that no dressing up was required
Because the facts are the facts & they look dire
Affordable health care (ACA) has expired
#SaveMedicaid #ADA @meactnet.bsky.social
Things are so scary, that no dressing up was required
Because the facts are the facts & they look dire
Affordable health care (ACA) has expired
#SaveMedicaid #ADA @meactnet.bsky.social
Reposted by Bridget
Let’s be clear. If the federal government doesn't make changes to health care during this shutdown, then a lot of Americans WILL lose access to our healthcare as we know it.
We are joining in coalition with other orgs aimed at protecting Medicaid in FLIPPING the Narrative. We need your help!
We are joining in coalition with other orgs aimed at protecting Medicaid in FLIPPING the Narrative. We need your help!
October 29, 2025 at 6:23 PM
Let’s be clear. If the federal government doesn't make changes to health care during this shutdown, then a lot of Americans WILL lose access to our healthcare as we know it.
We are joining in coalition with other orgs aimed at protecting Medicaid in FLIPPING the Narrative. We need your help!
We are joining in coalition with other orgs aimed at protecting Medicaid in FLIPPING the Narrative. We need your help!
Reposted by Bridget
Today is the day after Halloween & this pumpkin is not scary
...
Not like Medicaid cuts are scary for millions of Americans - they're life and death.
#savemedicaid #aca @meactnet.bsky.social
...
Not like Medicaid cuts are scary for millions of Americans - they're life and death.
#savemedicaid #aca @meactnet.bsky.social
November 2, 2025 at 2:36 AM
Today is the day after Halloween & this pumpkin is not scary
...
Not like Medicaid cuts are scary for millions of Americans - they're life and death.
#savemedicaid #aca @meactnet.bsky.social
...
Not like Medicaid cuts are scary for millions of Americans - they're life and death.
#savemedicaid #aca @meactnet.bsky.social
Reposted by Bridget
November 2, 2025 at 4:44 PM
Reposted by Bridget
Patient voices were heard! The ADDRESS-LC trial on Bezisterim is now open to those who have been living with Long COVID for more than 2 years. We’re glad to see Biovie’s trial continues to reflect patient + scientific input!
Find a trial site near you: addresslongcovid.com/sites/
Find a trial site near you: addresslongcovid.com/sites/
Study Sites | Address: Long COVID Clinical Study | BioVie Pharma
Study Sites near you! Learn more about participating in a clinical study of a Trial Drug to treat neurological symptoms of Long COVID.
addresslongcovid.com
September 23, 2025 at 10:29 PM
Patient voices were heard! The ADDRESS-LC trial on Bezisterim is now open to those who have been living with Long COVID for more than 2 years. We’re glad to see Biovie’s trial continues to reflect patient + scientific input!
Find a trial site near you: addresslongcovid.com/sites/
Find a trial site near you: addresslongcovid.com/sites/
Reposted by Bridget
Help needed from LC pals!
The CURE ID survey, where you report meds and supps you’ve tried, is reopening!
If you’ve reported before, they’d love more info on what *didn’t* work for you, and what you’ve tried more recently.
And if you’re new to this, they want you to join in! Overview below:
The CURE ID survey, where you report meds and supps you’ve tried, is reopening!
If you’ve reported before, they’d love more info on what *didn’t* work for you, and what you’ve tried more recently.
And if you’re new to this, they want you to join in! Overview below:
Long Covid sky, do you know about CURE ID cure.ncats.io an FDA survey on meds you’ve trialed?
Results could help show NIH there’s more to study than melatonin & computer games! But CURE ID needs 1000 reports to start crunching data! Will you take the survey—& ask a pal to join too?
Here’s how! 🧵
Results could help show NIH there’s more to study than melatonin & computer games! But CURE ID needs 1000 reports to start crunching data! Will you take the survey—& ask a pal to join too?
Here’s how! 🧵
August 28, 2025 at 8:45 PM
Help needed from LC pals!
The CURE ID survey, where you report meds and supps you’ve tried, is reopening!
If you’ve reported before, they’d love more info on what *didn’t* work for you, and what you’ve tried more recently.
And if you’re new to this, they want you to join in! Overview below:
The CURE ID survey, where you report meds and supps you’ve tried, is reopening!
If you’ve reported before, they’d love more info on what *didn’t* work for you, and what you’ve tried more recently.
And if you’re new to this, they want you to join in! Overview below:
Reposted by Bridget
ME communication/caregiver survey to help with the development of a communication app
Caregiver survey
docs.google.com/forms/d/e/1F...
ME patient survey
docs.google.com/forms/d/e/1F...
#LongCovid #MEcfs
Caregiver survey
docs.google.com/forms/d/e/1F...
ME patient survey
docs.google.com/forms/d/e/1F...
#LongCovid #MEcfs
August 27, 2025 at 1:08 AM
ME communication/caregiver survey to help with the development of a communication app
Caregiver survey
docs.google.com/forms/d/e/1F...
ME patient survey
docs.google.com/forms/d/e/1F...
#LongCovid #MEcfs
Caregiver survey
docs.google.com/forms/d/e/1F...
ME patient survey
docs.google.com/forms/d/e/1F...
#LongCovid #MEcfs
Reposted by Bridget
I learned nothing about #MECFS in med school.
Had 1 lecture on #EDS that emphasized how rare it is.
Had 1 lecture mentioning #dysautonomia, nothing on #POTS
Zero on #MCAS
Repeated reminders that patients omit, fib, may not be reliable historians etc.
Granted this was 2 decades ago but 🤷🏻♀️
Had 1 lecture on #EDS that emphasized how rare it is.
Had 1 lecture mentioning #dysautonomia, nothing on #POTS
Zero on #MCAS
Repeated reminders that patients omit, fib, may not be reliable historians etc.
Granted this was 2 decades ago but 🤷🏻♀️
personally, I feel that instead of training doctors to expect that patients are overly interested in their symptoms and prone to hysteria they should instead be taught to understand that people are aware of their bodies and are reliable reporters of their own health.
August 27, 2025 at 2:28 AM
I learned nothing about #MECFS in med school.
Had 1 lecture on #EDS that emphasized how rare it is.
Had 1 lecture mentioning #dysautonomia, nothing on #POTS
Zero on #MCAS
Repeated reminders that patients omit, fib, may not be reliable historians etc.
Granted this was 2 decades ago but 🤷🏻♀️
Had 1 lecture on #EDS that emphasized how rare it is.
Had 1 lecture mentioning #dysautonomia, nothing on #POTS
Zero on #MCAS
Repeated reminders that patients omit, fib, may not be reliable historians etc.
Granted this was 2 decades ago but 🤷🏻♀️
Reposted by Bridget
Without fail.
Me: I didn’t do anything extra. Why do I feel like I’m on the edge of the crash?
Husband: Did you check the weather?
I hate the cold and heat intolerance. I have a narrow 10 degree window in which my symptoms drop.
#MECFS
Me: I didn’t do anything extra. Why do I feel like I’m on the edge of the crash?
Husband: Did you check the weather?
I hate the cold and heat intolerance. I have a narrow 10 degree window in which my symptoms drop.
#MECFS
Long COVID and ME/CFS share profound weather sensitivity due to autonomic dysfunction.
Heat, cold, and pressure changes trigger systemic crashes, revealing a common pathophysiology and urgent need for clinical recognition and climate-adaptive care.
gemini.google.com/share/a7fcee...
Heat, cold, and pressure changes trigger systemic crashes, revealing a common pathophysiology and urgent need for clinical recognition and climate-adaptive care.
gemini.google.com/share/a7fcee...
August 27, 2025 at 2:34 AM
Without fail.
Me: I didn’t do anything extra. Why do I feel like I’m on the edge of the crash?
Husband: Did you check the weather?
I hate the cold and heat intolerance. I have a narrow 10 degree window in which my symptoms drop.
#MECFS
Me: I didn’t do anything extra. Why do I feel like I’m on the edge of the crash?
Husband: Did you check the weather?
I hate the cold and heat intolerance. I have a narrow 10 degree window in which my symptoms drop.
#MECFS
Reposted by Bridget
#severeME Day
Aug 8th is a day of Remembrance & a day of amplification
25% of those with #MyalgicEncephalomyelitis are Severe/Very Severe. Trapped in the Dark, the Void, the Wasteland
#SevereMEAwareness
#SevereMEAwarenessDay
#UnitedForME
Aug 8th is a day of Remembrance & a day of amplification
25% of those with #MyalgicEncephalomyelitis are Severe/Very Severe. Trapped in the Dark, the Void, the Wasteland
#SevereMEAwareness
#SevereMEAwarenessDay
#UnitedForME
August 7, 2025 at 6:03 PM
#severeME Day
Aug 8th is a day of Remembrance & a day of amplification
25% of those with #MyalgicEncephalomyelitis are Severe/Very Severe. Trapped in the Dark, the Void, the Wasteland
#SevereMEAwareness
#SevereMEAwarenessDay
#UnitedForME
Aug 8th is a day of Remembrance & a day of amplification
25% of those with #MyalgicEncephalomyelitis are Severe/Very Severe. Trapped in the Dark, the Void, the Wasteland
#SevereMEAwareness
#SevereMEAwarenessDay
#UnitedForME
Reposted by Bridget
“If I'm asked to do something not on the schedule I think, "How much will this cost me? How much pain will this invite?" Socially speaking, this is nothing short of agony.": buff.ly/MnFdD1A
from elle
#SocialLife #lifestyle #ChronicPain #NEisvoid #ChronicFatigue
from elle
#SocialLife #lifestyle #ChronicPain #NEisvoid #ChronicFatigue
"My Body Is No Longer My Own and I am Terrified."
Chronic illness is an education in how much every single part of your body matters.
buff.ly
July 11, 2025 at 9:30 AM
“If I'm asked to do something not on the schedule I think, "How much will this cost me? How much pain will this invite?" Socially speaking, this is nothing short of agony.": buff.ly/MnFdD1A
from elle
#SocialLife #lifestyle #ChronicPain #NEisvoid #ChronicFatigue
from elle
#SocialLife #lifestyle #ChronicPain #NEisvoid #ChronicFatigue
Reposted by Bridget
Please give as you are able today!
Help is so very greatly needed and appreciated.
The sooner that I can raise the rest of the funds, the better for my complicated health issues. It will also allow me to devote more of my very limited energy towards ME/CFS advocacy.
#StandByMEcfs #pwMEcfs since 2009
Help is so very greatly needed and appreciated.
The sooner that I can raise the rest of the funds, the better for my complicated health issues. It will also allow me to devote more of my very limited energy towards ME/CFS advocacy.
#StandByMEcfs #pwMEcfs since 2009
June 25, 2025 at 5:20 PM
Please give as you are able today!
Help is so very greatly needed and appreciated.
The sooner that I can raise the rest of the funds, the better for my complicated health issues. It will also allow me to devote more of my very limited energy towards ME/CFS advocacy.
#StandByMEcfs #pwMEcfs since 2009
Help is so very greatly needed and appreciated.
The sooner that I can raise the rest of the funds, the better for my complicated health issues. It will also allow me to devote more of my very limited energy towards ME/CFS advocacy.
#StandByMEcfs #pwMEcfs since 2009
Extremely fascinating. Looking forward to my brain deciding I can dig into this!!
🧬 New study finds shared metabolic dysfunction in #MECFS & #LongCOVID using systems modeling.
🔬 Predicts candidate treatments incl. NADH, NAC, L-carnitine & MitoQ.
📖 Open-access: www.mdpi.com/1422-0067/26...
🔬 Predicts candidate treatments incl. NADH, NAC, L-carnitine & MitoQ.
📖 Open-access: www.mdpi.com/1422-0067/26...
www.mdpi.com
June 25, 2025 at 8:46 PM
Extremely fascinating. Looking forward to my brain deciding I can dig into this!!
Reposted by Bridget
Cool! 😎
I had meetings this morning with staff from #Oregon senators @wyden.senate.gov & @jeff-merkley.bsky.social as part of @solveme.bsky.social Advocacy Week 😁
Looking forward to some meetings on Thursday with staff from @salinas.house.gov office and other house reps!
#MEcfs #PwME #LongCovid
I had meetings this morning with staff from #Oregon senators @wyden.senate.gov & @jeff-merkley.bsky.social as part of @solveme.bsky.social Advocacy Week 😁
Looking forward to some meetings on Thursday with staff from @salinas.house.gov office and other house reps!
#MEcfs #PwME #LongCovid
June 24, 2025 at 10:58 PM
Cool! 😎
I had meetings this morning with staff from #Oregon senators @wyden.senate.gov & @jeff-merkley.bsky.social as part of @solveme.bsky.social Advocacy Week 😁
Looking forward to some meetings on Thursday with staff from @salinas.house.gov office and other house reps!
#MEcfs #PwME #LongCovid
I had meetings this morning with staff from #Oregon senators @wyden.senate.gov & @jeff-merkley.bsky.social as part of @solveme.bsky.social Advocacy Week 😁
Looking forward to some meetings on Thursday with staff from @salinas.house.gov office and other house reps!
#MEcfs #PwME #LongCovid
Nothing says #Maryland like something with our flag on it. Made sure to wear my MD flag earrings today for meetings with staff at offices of @vanhollen.senate.gov & @alsobrooks.senate.gov for
@solveme.bsky.social Advocacy Day!
@solveme.bsky.social Advocacy Day!
June 24, 2025 at 9:54 PM
Nothing says #Maryland like something with our flag on it. Made sure to wear my MD flag earrings today for meetings with staff at offices of @vanhollen.senate.gov & @alsobrooks.senate.gov for
@solveme.bsky.social Advocacy Day!
@solveme.bsky.social Advocacy Day!
Reposted by Bridget
Happy JUNETEENTH y'all!!! Support Black creators. Here's a great place to start:
go.bsky.app/VSHmC2p
go.bsky.app/VSHmC2p
June 20, 2025 at 12:27 AM
Happy JUNETEENTH y'all!!! Support Black creators. Here's a great place to start:
go.bsky.app/VSHmC2p
go.bsky.app/VSHmC2p
Reposted by Bridget
For #Juneteenth we collected some resources:
JUNETEENTH: it's the celebration of the end of slavery in the United States, marking the day when the last enslaved African Americans were free.
nmaahc.si.edu/explore/mome...
JUNETEENTH: it's the celebration of the end of slavery in the United States, marking the day when the last enslaved African Americans were free.
nmaahc.si.edu/explore/mome...
June 19, 2025 at 9:23 PM
For #Juneteenth we collected some resources:
JUNETEENTH: it's the celebration of the end of slavery in the United States, marking the day when the last enslaved African Americans were free.
nmaahc.si.edu/explore/mome...
JUNETEENTH: it's the celebration of the end of slavery in the United States, marking the day when the last enslaved African Americans were free.
nmaahc.si.edu/explore/mome...
Reposted by Bridget
We are honored to be able to share this speech by Grace- a college student living with ME and Long COVID.
We invited Grace to speak at #MillionsMissing as it is so important that young adults affected by ME are heard.
Speech: youtu.be/ZgURoWamFNI
Take action: www.meactions.org/millionsmiss...
We invited Grace to speak at #MillionsMissing as it is so important that young adults affected by ME are heard.
Speech: youtu.be/ZgURoWamFNI
Take action: www.meactions.org/millionsmiss...
#MillionsMissing 2025 speech by Grace
YouTube video by The ME Action Network
youtu.be
June 10, 2025 at 5:09 PM
We are honored to be able to share this speech by Grace- a college student living with ME and Long COVID.
We invited Grace to speak at #MillionsMissing as it is so important that young adults affected by ME are heard.
Speech: youtu.be/ZgURoWamFNI
Take action: www.meactions.org/millionsmiss...
We invited Grace to speak at #MillionsMissing as it is so important that young adults affected by ME are heard.
Speech: youtu.be/ZgURoWamFNI
Take action: www.meactions.org/millionsmiss...
Reposted by Bridget
Thank you, @kristinwrites.bsky.social!
We have hoodies and sweatshirts and joggers too! Plus hats, tees, tanks, mugs, totes!
Check it out! www.bonfire.com/store/meacti...
#pwME #MyalgicEncephalomyelitis #MECFS #LongCovid #ChronicIllness #Spoonie
We have hoodies and sweatshirts and joggers too! Plus hats, tees, tanks, mugs, totes!
Check it out! www.bonfire.com/store/meacti...
#pwME #MyalgicEncephalomyelitis #MECFS #LongCovid #ChronicIllness #Spoonie
It’s not exactly summer wear but the hoodie I got this year is now my favorite article of clothing. SO soft inside, zip-up so perfect for taking on and off all day as my temperature fluctuates. Loooooooove it!
Looking for some summer merch? We have tees, hats, totes, and mugs! bit.ly/MEActionStore
We have the SOS logo because we are still very much sending out an SOS!
We also have the classic #MillionsMissing design and the popular #StillSickStillFighting!
#PwME #MECFS #LongCovid
We have the SOS logo because we are still very much sending out an SOS!
We also have the classic #MillionsMissing design and the popular #StillSickStillFighting!
#PwME #MECFS #LongCovid
June 10, 2025 at 5:50 PM
Thank you, @kristinwrites.bsky.social!
We have hoodies and sweatshirts and joggers too! Plus hats, tees, tanks, mugs, totes!
Check it out! www.bonfire.com/store/meacti...
#pwME #MyalgicEncephalomyelitis #MECFS #LongCovid #ChronicIllness #Spoonie
We have hoodies and sweatshirts and joggers too! Plus hats, tees, tanks, mugs, totes!
Check it out! www.bonfire.com/store/meacti...
#pwME #MyalgicEncephalomyelitis #MECFS #LongCovid #ChronicIllness #Spoonie
Reposted by Bridget
Premiering Now: Biomechanical Considerations in Pediatric ME/CFS the 4th Episode in the #MedEd Webinar Series by Dr. Peter Rowe youtube.com/@meactmaryland
Do you struggle to shampoo your hair? Grip strength? Come learn more! #MyalgicEncephalomyelitis ##thoracicoutletsyndrome #tos
Do you struggle to shampoo your hair? Grip strength? Come learn more! #MyalgicEncephalomyelitis ##thoracicoutletsyndrome #tos
June 9, 2025 at 4:58 PM
Premiering Now: Biomechanical Considerations in Pediatric ME/CFS the 4th Episode in the #MedEd Webinar Series by Dr. Peter Rowe youtube.com/@meactmaryland
Do you struggle to shampoo your hair? Grip strength? Come learn more! #MyalgicEncephalomyelitis ##thoracicoutletsyndrome #tos
Do you struggle to shampoo your hair? Grip strength? Come learn more! #MyalgicEncephalomyelitis ##thoracicoutletsyndrome #tos
Reposted by Bridget
Improving accessibility, the "Evidence-Based Pediatric ME/CFS webinar series by Dr. Peter Rowe" now have their full transcripts available via link - not just on www.youtube.com/@meactmaryland
#MyalgicEncephalomyelitis
#pediatrics
#MedEd
#MECFS
#MyalgicEncephalomyelitis
#pediatrics
#MedEd
#MECFS
#MEAction Maryland
Our work as advocates for #mecfs involves a lot of myth busting about common misconceptions of complex chronic illness. One of the most dangerous myths we address is that children don’t become chronic...
www.youtube.com
June 7, 2025 at 9:29 AM
Improving accessibility, the "Evidence-Based Pediatric ME/CFS webinar series by Dr. Peter Rowe" now have their full transcripts available via link - not just on www.youtube.com/@meactmaryland
#MyalgicEncephalomyelitis
#pediatrics
#MedEd
#MECFS
#MyalgicEncephalomyelitis
#pediatrics
#MedEd
#MECFS
Reposted by Bridget
Biomechanical Manifestations in Pediatric ME/CFS by Dr. Peter Rowe premieres at 1pm today (6/9)
Do you struggle with tasks requiring you to put your arms over your head? Maybe shampooing your hair? grip stregnth?
Come learn more about #ThoracicOutletSyndrome (TOS)
www.youtube.com/@meactmaryland
Do you struggle with tasks requiring you to put your arms over your head? Maybe shampooing your hair? grip stregnth?
Come learn more about #ThoracicOutletSyndrome (TOS)
www.youtube.com/@meactmaryland
June 9, 2025 at 6:24 AM
Biomechanical Manifestations in Pediatric ME/CFS by Dr. Peter Rowe premieres at 1pm today (6/9)
Do you struggle with tasks requiring you to put your arms over your head? Maybe shampooing your hair? grip stregnth?
Come learn more about #ThoracicOutletSyndrome (TOS)
www.youtube.com/@meactmaryland
Do you struggle with tasks requiring you to put your arms over your head? Maybe shampooing your hair? grip stregnth?
Come learn more about #ThoracicOutletSyndrome (TOS)
www.youtube.com/@meactmaryland
Reposted by Bridget
To learn more about ME/CFS, check out:
Bateman Horne Center (www.batemanhornecenter.org).
MEAction Network (www.meaction.net),
Open Medicine Foundation (www.omf.ngo),
Solve M.E. (www.solvecfs.org)
#StandByMEcfs #StillSickStillFighting #MillionsMissing
Bateman Horne Center (www.batemanhornecenter.org).
MEAction Network (www.meaction.net),
Open Medicine Foundation (www.omf.ngo),
Solve M.E. (www.solvecfs.org)
#StandByMEcfs #StillSickStillFighting #MillionsMissing
June 4, 2025 at 4:28 AM
To learn more about ME/CFS, check out:
Bateman Horne Center (www.batemanhornecenter.org).
MEAction Network (www.meaction.net),
Open Medicine Foundation (www.omf.ngo),
Solve M.E. (www.solvecfs.org)
#StandByMEcfs #StillSickStillFighting #MillionsMissing
Bateman Horne Center (www.batemanhornecenter.org).
MEAction Network (www.meaction.net),
Open Medicine Foundation (www.omf.ngo),
Solve M.E. (www.solvecfs.org)
#StandByMEcfs #StillSickStillFighting #MillionsMissing