Continuing to highlight each episode (and make sure their slides get shared on the early episodes) Episode 4: Biomechanical Manifestations in Pediatric ME/CFS YT: tinyurl.com/RoweMECFSped... #thoracicOutletSyndrome #MyalgicEncephalomyelitis

Neuroanatomical Considerations in Pediatric ME/CFS Monday, December 15th at 1pm Dr Peter Rowe's 5th #Evidencebased #Pediatric #MECFS webinar series #MedEd #MedSky Provider-oriented & patient accessible #livedexperience panel Available online at: Youtube.com/@MEActMaryland #Neuroanatomy

Community is caregiving. Sending you all a virtual hug today. I appreciate you all 💜

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.

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

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!

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

Tues, Nov 4th @7pm Advocacy Meeting **New** Zoom Link in Bio #MEAction #Advocacy #MECFS #LongCovid

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/

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:

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

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 🤷🏻‍♀️

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

#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

“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

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

Extremely fascinating. Looking forward to my brain deciding I can dig into this!!

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

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!

Happy JUNETEENTH y'all!!! Support Black creators. Here's a great place to start: go.bsky.app/VSHmC2p

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...

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...

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

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

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

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

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

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

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

Check out the virtual #BlueSunday gathering by @meactmaryland.bsky.social! Details below! Thank you #MEAction Maryland! #MEAction Georgia also has a Blue Sunday gathering with a virtual option. #pwME #MyalgicEncephalomyelitis #MillionsMissing

ZeeZee, Terra & Griff helped me prepare for #BlueSundayforME2025 the way only cats can... Two "helped" and one napped. 💙 💙 💙

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

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.

Blue Sunday plans for #MEAction Maryland

Prepping for Monday, May 12th's #MEAwarenessDay by putting up my #MillionsMissing Reel. @meactmaryland.bsky.social @meactnet.bsky.social #DisabilitySOS #DisabilityJustice #pwME #MECFS #MyalgicEncephalomyelitis #LongCovid #chronicillness #spoonie #disability

I've launched fundraisers, but I will also match donations to other ME-supporting 501(c)3's if you send me your donation receipts. I will *double-match* donations with my own donation + employer match. #MEAction: meaction.funraise.org/fundraiser/e... OMF: openmedicinefoundation.crowdchange.co/50084

#disabilitySOS #MillionsMissing #PwME

This quick guide will help you understand: ➡ ME diagnosis & symptoms ➡ Treatments & adaptations that can help ➡ Support groups for patients & caregivers ➡ Medical resources geared towards doctors – Many are uninformed about ME & LC, & may respond better to resources created specifically for docs

May 1 is May Day + the first day of #MEAwarenessMonth. As always, we know that our struggles are connected! #LaborJustice #DisabilityJustice #SolidarityForever Check out our What is ME? resource from Long COVID Essentials series, a collab w @thesicktimes.bsky.social longcovidjustice.org/what-is-me

The Schmidt Initiative for Long Covid (SILC) @projectechohq.bsky.social Series is a comprehensive, global initiative sharing "what works" and "what we know" about #LongCovid with health care providers, patients, and other stakeholders worldwide. I consistently show up and share this series.

Maryland showed up! @vanhollen.senate.gov represented at today's bipartisan Biomedical Research Senate Appropriation Meeting. He submitted letters from 6 orgs (Maryland orgs!) Gonna have to do some googling & find out who... @senateapprops.bsky.social (Sen GOP on bsky, tag them pls?)

Will speak to the known veracity & loveliness of @juliametraux.bsky.social in the community. You're in good hands with her, if you take her up on an interview (according to multiple sources)

🚨 New study alert! Individuals with chemical intolerance (CI) - which affects ~20% of the US population - had higher COVID-19 rates, more severe symptoms, & were more likely to report #LongCOVID. CI should be considered a high-risk group. 🧪📉🧠 Read more: fmch.bmj.com/content/13/2... #COVID19

Being without doing. #MyalgicEncephalomyelitis re-defines us; un-defines us. Community matters. Reach out to yours. You never know when it will matter more than you think.

Seriously loving this Jess!!

#MEAction has been hard at work connecting individuals to their elected officials. We’ve been partnering with @notjustfatigue.bsky.social setting up congressional meetings to ask Congress for their support in making funding the ME/CFS Research Roadmap a reality. www.meaction.net/2025/04/23/m...

Announcing #MillionsMissing 2025 on May 12th! #MEAction is organizing a community-wide protest to send out an SOS to our elected officials: Save our Support Systems. Save our Science. Save Our Society. Learn more here: www.meaction.net/2025/04/02/m... #pwME #MECFS #LongCovid #disability

May Advocacy Meeting has a new time/date: SATURDAY, May 3rd at 4pm! #MEAction #MillionsMissing will be on the agenda As well as info on MoCo's in-person Proclamation Presentation May 13th at 9am MDH, Rowe Webinars, reminder to sign up for Solve ME Advocacy week & #BlueSunday Phew!! Come share

Who are your favorite researchers in #MECFS & #LongCOVID outside of the United States, #NEISvoid? Please do share.