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meactmaryland.bsky.social
MEActMaryland
@meactmaryland.bsky.social
1.9K followers 1.8K following 190 posts
#MEActionMaryland
Maryland chapter of the #MEAction Network: advocacy, education & support for people with Myalgic Encephalomyelitis #MECFS & complex chronic illnesses in MD/DMV

https://youtube.com/@meactmaryland

https://linktr.ee/meactmd
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meactmaryland.bsky.social
MEActMaryland @meactmaryland.bsky.social · Jun 3
The objectives of this #MedEd webinar:
1) Joint hypermobility & Ehlers-Danlos Syndrome are risk factors for ME/CFS, orthostatic intolerance, & structural dysfunctions
2)Symptoms can be provoked by application of a neural strain
3) Adverse neural tension & neural tension dysfunction.
Alt ID: Graphic in blue/ yellow/ and white sharing info about the webinar “Biomechanical Manifestations in Pediatric ME/CFS” which launched on June 9 at 1 pm ET. The graphic also lists things you will learn and shares that it will be facilitated by #MEAction Maryland. Those are also listed in this post. #TeachMETreatME logo is in the bottom corner. This series will be available online at youtube.com/@MEActmaryland
meactmaryland.bsky.social
Tues, Nov 4th @7pm
Advocacy Meeting

**New** Zoom Link in Bio

#MEAction
#Advocacy
#MECFS
#LongCovid
orange fox sits in the middle of the gray screen 2 trees with multi-colored autumnal leaves; one on each side of the screen. @meactmaryland.bsky.social logo bottom right corner Text reads Tues, Nov 4th @7pm Advocacy Meeting **New** Zoom Link in Bio
November 2, 2025 at 4:44 PM
meactmaryland.bsky.social
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
ALT-TEXT: smallish Halloween pumpkin sort of adorably decorated (with stick on decorations) black ears, black wings, big huge owl eyes, yellow beak, huge orange flippers
November 2, 2025 at 2:36 AM
Reposted by MEActMaryland
meactnet.bsky.social
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!
A character in a costume mask and black cloak is at top of graphic with black background. Text underneath: Don’t Let This Season BE A Horror Story. SAVE ACA! Save MEDICAID!
October 29, 2025 at 6:23 PM
meactmaryland.bsky.social
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
Deja Blue, a light brown service dog sits in the grass in front of a sign PAWS OFF OUR HEALTHCARE! PAWS OFF OUR RIGHTS! PAWS OFF OUR FREEDOM! #NOKINGS #meactmaryland @meactmaryland.bsky.social #TEAMBLUEZOO sign with pawprints reading: PAWS OFF OUR HEALTHCARE! PAWS OFF OUR RIGHTS! PAWS OFF OUR FREEDOM! #NOKINGS #meactmaryland @meactmaryland.bsky.social #TEAMBLUEZOO
October 31, 2025 at 7:58 PM
Reposted by MEActMaryland
newdisabledsouth.org
We are offering one time payments to disabled folks in the South who will not receive their SNAP benefits this month. If you need help, please find more information and details at ndsdj.org/snaphelp.

If you’d like to donate to the fund, go to ndsdj.org/snapdonate

We take care of each other ❤️
Graphic with a light background and the New Disabled South logo in the top right corner. Large bold text reads: ‘Apply: Food Assistance for Disabled People in the South.’ Text below explains that due to the government shutdown, people in the South will not receive their November SNAP (Supplemental Nutrition Assistance Program) payments. New Disabled South is offering one-time payments to help people impacted by not receiving SNAP — $100 for individuals and $250 for households with two or more people. It notes that funding is first-come, first-served and that SSI or Medicaid recipients should read a disclaimer before applying. A call-to-action at the bottom reads: ‘Apply at ndsdj.org/snaphelp.’ There are small illustrations of a grocery bag and a grocery list. Graphic with a light background and the New Disabled South logo in the top right corner. Large bold text reads: ‘Donate to Support Food Assistance for Disabled People in the South.’ The message says that New Disabled South is raising money to provide direct payments to people impacted by loss of SNAP funds, and invites donations. A black banner at the bottom reads: ‘Donate at ndsdj.org/snapdonate.’ A small illustration of a grocery bag with food items is on the left. Graphic in Spanish with a light background and the New Disabled South logo in the top right corner. Large bold text reads: ‘Solicitar: Asistencia Alimentaria para Personas con Discapacidad en el Sur.’ The text explains that due to the government shutdown, people will not receive November SNAP payments and that New Disabled South offers one-time payments of $100 for individuals and $250 for households with two or more people, first-come, first-served. It also includes a note for SSI or Medicaid recipients. A black banner at the bottom reads: ‘Solicitar en ndsdj.org/snaphelp.’ A small illustration of a grocery bag and grocery list appears on the left. Graphic in Spanish with a light background and the New Disabled South logo in the top right corner. Large bold text reads: ‘Dona para apoyar la asistencia alimentaria para personas con discapacidad en el Sur.’ The text explains that New Disabled South is raising funds to make direct payments to people affected by the loss of SNAP funds and provides information on how to donate. A black banner at the bottom reads: ‘Dona en ndsdj.org/snapdonate.’ A small illustration of a grocery bag with food items appears on the left.
October 28, 2025 at 3:11 AM
Reposted by MEActMaryland
tomkindlon.bsky.social
🧵
"RFK Jr. has betrayed millions of Americans like me who suffer from chronic illness" by By Effie Seiberg who has ME/CFS and also discusses long Covid

www.sfchronicle.com/opinion/open...

archive.ph/KPhx4#select...

#MEcfs #LongCovid
1/
RFK Jr. has betrayed millions of Americans like me who suffer from chronic illness By Effie Seiberg, Contributor Oct 27, 2025 Health and Human Services Secretary Robert F. Kennedy Jr. says he wants to “end the chronic disease epidemic,” but his cuts to research seem opposed to this goal. J. Scott Applewhite/AP
October 27, 2025 at 2:14 PM
Reposted by MEActMaryland
batemanhornecenter.bsky.social
Exciting News!
Dr. Melanie Hoppers will be an expert panelist at the first-ever Infection-Associated Chronic Conditions (IACC) Case Competition hosted by the @umisr.bsky.social 
A major step toward innovation in #LongCOVID, #MECFS & #POTS care.

Learn more: https://bit.ly/3KXI3T7
#IACC2025
Inaugural 2025 IACC Long COVID Case Competition at UMich Ross School of Business, October 31, 2025, from 9 AM to 5 PM ET.
October 27, 2025 at 3:02 PM
Reposted by MEActMaryland
rippermd41.bsky.social
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.
October 27, 2025 at 10:26 PM
Reposted by MEActMaryland
sueponcin.com
The IACC Case Competition is happening this Friday! Here is the link to sign up to and virtually. I cannot wait to hear what University of Michigan students came up with to help those who suffer from chronic illness and Long Covid.

www.bus.umich.edu/Conferences/...
October 28, 2025 at 1:23 AM
Reposted by MEActMaryland
meactnet.bsky.social
Join us tomorrow- Oct. 28th at 3 pm ET for a virtual workshop! Get your ticket today. www.meaction.net/event-detail...

Grief and complex chronic illness go hand in hand. We are excited to have Marisa Renee Lee bring her knowledge to our community.

#pwME #Grief #MECFS #LongCovid #ChronicIllness
October 27, 2025 at 3:40 PM
meactmaryland.bsky.social
Tomorrow
Tuesday, October 21st @ 4pm ET

Community Support Zoom #MEAction Maryland

"Come As You Are"

We've got new zoom links, so email us or check or link tree (in bio).

#MECFS #LongCovid #CommunitySupport
Black background with top & bottom borders of autumnal colored leaves White text reads: Community Support Tuesday, October 21st @ 4pm ET "Come As You Are" **New** Zoom link in Bio Meactmaryland@social.bluesky logo bottom right corner
October 20, 2025 at 5:31 PM
Reposted by MEActMaryland
bhanlon15.bsky.social
11/22/21, Medical News Today: 'Through my eyes: Long neuro-COVID'

'My heart rate would increase further, to 170 bpm, on standing and with minimal exertion, such as getting a drink or using the bathroom.'

'I haven’t watched TV or driven in 10 months.'

www.medicalnewstoday.com/articles/thr...
My experience of living with long neuro-COVID
Dr. Kelly Ann Fearnley lives with long COVID and persistent neurological and neurocognitive symptoms. In this article, she talks about her experiences.
www.medicalnewstoday.com
October 15, 2025 at 10:01 PM
Reposted by MEActMaryland
tomkindlon.bsky.social
5-page @scienceforme.bsky.social post-exertional malaise ( #PEM ) fact sheet
www.s4me.info/docs/PEM_Fac...

Headings:
-Characteristics of PEM
-Symptoms of PEM
-Exertion and other PEM triggers
-Effects of exertion that are not PEM
-Living with PEM
-Examples of PEM
-Research on PEM

#MEcfs #CFS #PwME
Logo: Science for ME: Where science and ME/CFS community meet Post-exertional malaise (PEM) Key points  People with ME/CFS have episodes when they are much more ill than usual following physical or mental exertion. This is called post-exertional malaise, or PEM.  PEM is a hallmark of ME/CFS and is important for diagnosis  Activities like a short walk or reading a few pages may trigger PEM. For the most severely ill, even chewing may trigger it. For many, light, sound and other sensory stimuli also trigger PEM. Often it is the combined effect of all activities and stimuli over a day or more that triggers PEM.  PEM usually starts hours or a day or two after it is triggered and can last for hours, days, weeks or longer. During this time, a person cannot do as much as usual and needs to rest.  There is no effective treatment for PEM.  PEM is not the same as the fatigue and muscle soreness anyone can experience after more activity than usual.
October 11, 2025 at 4:46 PM
meactmaryland.bsky.social
Tues, Oct 7th at 7pm

1st meeting of the 2025-2026 Advocacy Year.

NEW ZOOM link in bio.

#MEAction website link not yet updated 10/5
orange & black background with white text picture of fall foliage with red/orange leaves on the ground text reads: Do the October Slide with Us! 1st meeting of the 2025-2026 Advocacy year Tuesday, October 7th @ 7pm New Zoom links in bio @MEActMaryland.bsky.social logo bottom left corner
October 5, 2025 at 8:52 PM
Reposted by MEActMaryland
tomkindlon.bsky.social
🧵
"Myalgic Encephalomyelitis in Childhood: How the Paediatrician Can Help" by Nigel Speight

This useful document was handed out at #MEAction stall at March 2025 Royal College of Paediatrics & Child Health Conference

#MyalgicEncephalomyelitis #PwME @meactionuk.bsky.social

1/
MYALGIC ENCEPHALOMYELITIS IN CHILDHOOD How the Paediatrician Can Help Dr Nigel Speight MA, MB, BChir, FRCP, FRCPCH I am a paediatrician based in County Durham who has seen approxi- mately 200 children with ME in my local area over the last 20 years, as well as a further c2000 from outside the area. Most of my cases are teenagers but I have a handful of quite severe cases in the 5-10 age group. I have seen two cases where the onset appeared to be before the age of two. Research has consistently shown that ME, also (misleadingly) referred to as ‘chronic fatigue syndrome’, has a major negative impact on the quality of life of patients young and old. By making a diagnosis and offering appropriate management and support we can improve the quality of life of young ME patients. ≈≈≈≈≈≈≈ Importance of Diagnosis First and foremost it is important to positively establish an accurate di- agnosis. It is vital that a proper history is taken and that sufficient time is allocated for this task. Only then will the distinctive clinical picture that permits a positive diagnosis of ME be uncovered. The commonest reason for missing the diagnosis is to concentrate on one symptom on- ly, or to take an incomplete history. Clear and simple guidance on diagnosis is set out in the 2021 NICE Guideline: https://www.nice.org.uk/guidance/NG206 While ‘fatigue’ is commonly accepted as a key symptom, what ME pa- tients experience is better described as reduced energy levels, to- gether with ‘fatiguability’. All symptoms can be made worse by physical exertion and mental effort can also make physical symptoms worse. When physically depleted pa- tients will notice their mental faculties deteriorate, and they can be- come confused and forgetful. NICE have recognised Post Exertional Malaise (PEM), also described as Post Exertional Symptom Exacerbation (PESE), as a cardinal feature of the condition. It is also recognised that patients experience deterioration after exposure to sensory stimulus …
September 30, 2025 at 6:31 PM
Reposted by MEActMaryland
hollyl.bsky.social
Yes and yes! Hope you can join tomorrow!

#pwME #MECFS #LongCovid #MyalgicEncephalomyelitis #disability
meactnet.bsky.social #MEAction Network @meactnet.bsky.social · Sep 30
Need a little distraction? Enjoy learning about a new book?

Join us for a Q&A with author and #MEAction volunteer Brian Buckbee TOMORROW - October 1st at 3 pm ET!

Register here: www.meaction.net/event-detail...

#pwME #Book #author #disability #chronicIllness #InvisibleIllness
pale pink square image with stars and starburst around the image. In the center is the picture of a book, We should all be Birds which features a pigeon. Black font, Q&A with Author Brain Buckbee. Wednesday, Oct 1st at 12pm PT/3pm ET. Meaction logo right top corner.
October 1, 2025 at 12:51 AM
meactmaryland.bsky.social
One more day!

This fantastic Mayo Clinic #MyalgicEncephalomyelitis #CME has just the rest of today & tomorrow, Sept 30th left. Send it to your providers ASAP!
#MECFS #MedSky
exceedhergrasp1.bsky.social It's ME(Jaime) @exceedhergrasp1.bsky.social · Sep 27
Need #CME, #MedSky? You can take this Mayo Clinic #MECFS (myalgic encephalomyelitis/chronic fatigue syndrome) CME-- but just until Tuesday!

Infection-associated chronic conditions are more prevalent than ever but under-taught in med school. Don't miss out on this opportunity to learn dx and tx!
meactnet.bsky.social #MEAction Network @meactnet.bsky.social · Sep 16
Take action today!

Contact your doctor or nurse practitioner to let them know they have 2 more weeks to take the Mayo Clinic Proceeding CME on ME/CFS.

Sample messaging: docs.google.com/document/d/1...

Thank you!

#MedEd #pwME #MECFS #CME

Thank you to @exceedhergrasp1.bsky.social!
September 29, 2025 at 11:47 PM
Reposted by MEActMaryland
litsadremousis.bsky.social
Telehealth is crucial for the tens of millions of Americans w/ #MyalgicEncephalomyelitis, #LongCovid, or dozens of other major illnesses and/or #disabilities.

Please help us save telehealth!

Even if you're healthy, this greatly impacts someone you love❤️
meactnet.bsky.social #MEAction Network @meactnet.bsky.social · Sep 26
Take action to save telehealth now! You can call or email your member of Congress.

To make this action easier, we have drafted up a sample script/email wording you can use: www.meactions.org/telehealth

#Telehealth #PwME #MECFS #LongCovid #disability
Graphic with megaphone and speech bubble in bright colors. Text: Take action today: support keeping telehealth!
September 28, 2025 at 6:36 PM
Reposted by MEActMaryland
massmecfs.bsky.social
We are so happy to announce that we will have Beth Pollack as our guest speaker for our Annual Meeting! Details coming soon!
MassMECFS.org
September 26, 2025 at 2:20 PM
Reposted by MEActMaryland
meactnet.bsky.social
Take action to save telehealth now! You can call or email your member of Congress.

To make this action easier, we have drafted up a sample script/email wording you can use: www.meactions.org/telehealth

#Telehealth #PwME #MECFS #LongCovid #disability
Graphic with megaphone and speech bubble in bright colors. Text: Take action today: support keeping telehealth!
September 26, 2025 at 4:25 PM
Reposted by MEActMaryland
aankphd.bsky.social
I do lukewarm showers and sit on the floor while drying my hair to keep from getting dizzy. Heat and standing still both tend to trigger bad things.
On the upside, autumn is here along with salty soups and walks in cool weather. I am so glad! (The cold never bothered me anyway…) 🍁❄️ #dysautonomia
thezebraalliance.bsky.social The Zebra Alliance Community @thezebraalliance.bsky.social · Aug 16
If you know, you know. 🤪😄😉
What tips do you have for people struggling with this?

#chronicilless #raredisease #EDS #ehlersdanlossyndrome #dysautonomia #POTS #healthmeme #meme #memes #jokes
someecards "You don't know what fatigue is until you've had to rest after taking a shower"
September 25, 2025 at 4:18 PM
meactmaryland.bsky.social
Telehealth ends with September! Use @peoplescdc.org's action tool to contact Congress & urge them:

Keep Telehealth! Our community relies on it as do millions of other Americans. There is a bill being considered now!

More details in the full PeoplesCDC🧵
actionnetwork.org/letters/cmsm...
September 25, 2025 at 3:14 AM
Reposted by MEActMaryland
meactnet.bsky.social
Are you a medical provider in need of a concise but helpful CME? Are you a patient wishing your clinicians knew more about ME, aka ME/CFS?

We have a CME for you but it is only available until Oct 1st.

Sample language & links:
docs.google.com/document/d/1...

#MedEd #CME #MECFS #NEISvoid
Laptop showing the Mayo Clinic Proceedings paper and CME "Diagnosis and Management of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome" Text above the laptop: ME/CFS CME Available! Until October 1st! Send it to your clinician now. Jaime Seltzer was one of the co-authors. bit.ly/MayoCME8
September 18, 2025 at 8:43 PM
Reposted by MEActMaryland
meactnet.bsky.social
"In a press release following the event, Health and Human Services (HHS) announced a new Long COVID public education and awareness campaign as well as an 'open source' medical resource platform."
September 19, 2025 at 8:25 PM