meactmaryland.bsky.social - Profile | ThreadSky | a Reddit-style client for Bluesky

June 9th at 1pm #MEAction Maryland announces the 4rd webinar in Evidence-Based Pediatric ME/CFS Medical Education Webinar Series by Dr. Peter Rowe: Biomechanical Manifestations in Pediatric ME/CFS. youtube.com/@MeactMaryland

submitted 17 hours ago • 1 comment

"Long COVID is common, affecting up to 10% to 20% of children with a history of COVID-19. With almost 6 million US children potentially affected, this is higher than the number of children with asthma, the most common chronic health problem in children." #LongCovid #Covid #MaskUp

submitted 23 hours ago • 1 comment

Just a few of the #MillionsMissing sharing our stories and sending out an S.O.S. for our community. Our stories have power! Share whenever you can. Save our support Systems. Save our Science. Save our Society.

submitted 4 days ago • 0 comments

Long COVID in Young Children, School-Aged Children, and Teens jamanetwork.com/journals/jam...

submitted 7 days ago • 0 comments

‘Results of this cohort study suggest that symptom patterns were distinguishable across infants/toddlers and preschool-aged children, and from previously studied older children and adults.’ jamanetwork.com/journals/jam... #PaediatricLongCovid #LongCovidKids #Childhood #RECOVER

submitted 7 days ago • 2 comments

We’re pleased to announce our first virtual Town Hall Meeting of 2025. Join us for updates on our activities, impact, research, and more. Date: Thu, June 5, 2025 Time: 12:00 PM – 1:00 PM ET Register: bit.ly/4dzof2h #LongCOVID #LongCOVIDWeb #covid #m #me #cfs #health #canada #britishcolumbia

submitted 8 days ago • 0 comments

@aapd-disability.bsky.social Created a Medicaid hub w/tools to call & write Congress. There are 2 explainers: what's in the Reconciliation (aka big beautiful) Bill & what it means for us; & what is a Reconcilliation Budget? American Association of People with Disabilities www.aapd.com/medicaid/

submitted 9 days ago • 1 comment

Sean O'Neill, senior writer at The Times, wins Campaigning Journalist of the Year at the UK Press Awards for his work on #mecfs Talk Radio | 13-minute video captured by Adam | 24 May 2025: www.youtube.com/watch?app=de... #MaeveInquest #malnutrition #SevereME

submitted 9 days ago • 0 comments

Some stellar interviews from #MEAction Scientific Director Jamie Seltzer for #MEAwareness & #MillionsMissing

submitted 10 days ago • 0 comments

KFF @kffhealthnews.bsky.social helps explain some of the changes in this chart www.kff.org/tracking-the...

submitted 11 days ago • 2 comments

Please sign and share if you’re able! Demand NIH allocate $50 million to fund the ME/CFS Research Roadmap! You can sign from any country and so you know for your energy, the form involves: • first name • surname • email • country bit.ly/MEcfsRoadmap #MEAction #MECFS #LongCovid #DisabilitySOS

submitted 11 days ago • 0 comments

Fatigue does not encapsulate what happens, the bone crushing exhaustion that overwhelms you...and the following thread #MyalgicEncephalomyelitis #pwME #MECFS

submitted 14 days ago • 0 comments

youtu.be/D6neeWnlyFE?... for the full episode! #peme #mecfs #millionsmissing @meactnet.bsky.social

submitted 15 days ago • 0 comments

May Community Support 5/20, Tuesday @4pm Link in linktree Background floral border

submitted 15 days ago • 0 comments

Trying to prep for #BlueSundayForME tomorrow, & my cats have definite opinions. Team ZeeZee votes wedgewood teapot #TeaPartyForME2025 www.facebook.com/share/p/1AeD...

submitted 16 days ago • 1 comment

governor.maryland.gov/news/press/p...

submitted 19 days ago • 0 comments

The disappointment of not returning school or entering the art show as planned, I had to remind myself, this is how #chronicillness works. You can't plan. You just have to make the most of when your body works while ensuring you're not to do too much!

submitted 20 days ago • 1 comment

Never forgotten the time I couldn’t tell my (late) mum that she had post. Simply could not find the words to to tell her. Wound up playing a long game of the worst kind of charades. As a writer when this happens it can be extremely frustrating. We live for words. #MECFS #MEAwarenessWeek

submitted 20 days ago • 0 comments

speak4.app/lp/0c017sb0

submitted 20 days ago • 0 comments

Friends, please spread the word that e. is offering to match donations to MEAction, OMF or any c3 org that works on ME/CFS—and then her employer will also match that! The employer match has a limit but hers does not 👀

submitted 20 days ago • 1 comment

After the Senate HELP committee hearings, correspondents @julierovner.bsky.social, @stephaniearmour.bsky.social, and @dariustahir.bsky.social, along with Senior Vice President Jennifer Kates, recapped the hearings, discussed what could come next for the department, and answered viewer questions.

submitted 20 days ago • 1 comment

Right? #LongCovid

submitted 20 days ago • 0 comments

Calling representatives has long been a straightforward way to push for political change, but for some people, it isn't available.

submitted 20 days ago • 19 comments

I’m sending out a @johnvsjonvsme.bsky.social #MillionsMissing #DisabilitySOS to health justice leaders #EndTB - doctors, authors, and advocates whose work I appreciate immensely: @joiamukherjee.bsky.social @mariasmilios.bsky.social @johngreensbluesky.bsky.social @vidyakrishnan.bsky.social (1/8)

submitted 20 days ago • 1 comment

A #MillionsMissing #DisabilitySOS update from our executive director, Laurie Jones, just went out by email! Are you subscribed to receive them? Sign up now, if not! www.meaction.net/subscribe/ Meanwhile, here is a peek at today's message from Laurie! mailchi.mp/meaction/mil... #pwME #MECFS

submitted 20 days ago • 1 comment

BLUE SUNDAY May 18th @ 1pm ET Living with #MECFS can be isolating, but you're not alone. Join the virtual Blue Sunday gathering to connect with others who understand. We'll be sharing moments of community and raising awareness together

submitted 20 days ago • 1 comment

Raising #MEAwareness today with @mococouncilmd.bsky.social. Both Council President Stewart & Dr Davis knocked it out of the park today at the Proclamation Presentation explaining #MyalgicEncephalomyelitis, an oftentimes unknown & misunderstood illness.

submitted 21 days ago • 0 comments

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

submitted 22 days ago • 0 comments

This is my SOS 🆘 I’ve had ME/CFS since I was 15 and since 2022 I have been Severe, in the 25% who are house or bedbound. It’s frightening and awful and we have no help or dedicated medical care. We need help, this is my SOS 🆘 #DisabilitySOS #MillionsMissing @meactnet.bsky.social

submitted 22 days ago • 1 comment

This. So much. This. No more words needed

submitted 22 days ago • 0 comments

@mococouncilmd.bsky.social #MEAwarenessDay Proclamation Presentation in Montgomery County Maryland Tuesday, May 13th at 11:15AM (please note the time change) Rockville: Montgomery County Council Building 100 Maryland Ave; Rockville, MD 20850 3rd Floor – Council Hearing Room

submitted 22 days ago • 1 comment