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

Colorado needs help getting signatures for a petition for masks in Healthcare settings. Theyre 60 away! Anyone can help. #MaskUp #StillMasking

Happy Holidays! Grateful for all of you

Can you sign & share our letter to HHS? freakinfrail.org Thank you to the 1600 who have signed! Congress has mandated that Medicaid recipients work 80 hours a month unless they can prove they are “medically frail." We want to protect Medicaid access for #pwME & #pwLC.

To all of my fellow chronically ill friends and those with disabilities, I want you to know something. Your worth is not measured by what your body lets you produce. I know the holidays are a tough time for many people, it can dredge up lot of different feelings, but you are not alone. #NEISVoid

Evidence-Based #Pediatric ME/CFS Webinar Series Episode 5 Dr Peter Rowe #Neuroanatomic Considerations in Pediatric ME/CFS Youtube.com/@MEActMaryland

Important share right here from #MEAction: a list of crisis resources. www.meaction.net/crisis-resou... #MECFS #disability #chronicillness #MillionsMissing

Share your shop! All community members are welcome to share a link or tag their shops in this thread. Whatever holiday you are celebrating this time of year, you are welcome to join in and do a little gift shopping or selling! #pwME #MECFS #LongCovid #MyalgicE #Holiday

“Due to the reinfection in 2024, I’m no longer able to sit out in the garden - a pleasure that took me two and a half years to build to, and only one reinfection took away from me again." Lydia Fischer Dooley, disabled by #LongCOVID triggered by a 2nd COVID in 2022. www.instagram.com/p/DSP9ch5ES8...

Final Community Support Call of 2025 Tuesday, December 16th @ 4pm ET. As always, it is "Come As You Are" Hope to see you there.

Nothing gets us through a week more than hearing Dr. Rowe talk about what gives him hope for the future of ME. We needed this today. Thx @solveme.bsky.social! #MyalgicEncephalomyelitis #MECFS #biomechanical #neuroanatomy #NEISvoid

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

Tuesday, Dec 2nd @7pm Advocacy Meeting New Zoom link in Bio ALT TEXT: (words from above) 4 cheerful cartoon penguins pose in winter gear along with snowflakes on a light blue background @meactmaryland logo bottom right corner #MECFS

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

Today at 3pm ET! #caregiver #UnitedForMW ##pwME

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...

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

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

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!

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

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 ❤️

🧵 "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/

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

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.

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/...

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

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

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...

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

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

🧵 "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/

Yes and yes! Hope you can join tomorrow! #pwME #MECFS #LongCovid #MyalgicEncephalomyelitis #disability

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

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❤️

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

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

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

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...

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

"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."

THIS. So much this.

We have so many amazing new designs and items available in our store! www.bonfire.com/store/meacti... Ready for fall? We have hoodies, sweatshirts, & joggers galore! Want a hot cuppa? We have a mug for that! Most designs were created by volunteer @hospmom.bsky.social. Thank you, Jess! #pwME

New study links long COVID to: – Heavier periods – Spotting – More bleeding days – Flare-ups of fatigue, PEM, brain fog during parts of the cycle Researchers also found hormone receptor & inflammation changes.

Low power mode is -unfortunately- super relatable over here right now! #ChronicIllness #NEISVoid

Posted this link to @whitneydafoe.bsky.social's #MECFS Resource list as a response elsewhere, but it is such a phenomenal resource it deserves a spotlight post www.whitneydafoe.com/mecfs/resour...

Dr. Peter Rowe was guest in a podcast for paediatricians, The Cribsiders Podcast, where he talked about Long Covid and ME/CFS in children and adolescents. thecurbsiders.com/cribsiders-p... #MEcfs #LongCovid #LongCovidKids #LCKids

Prof. Leonard Jason invites ME/CFS patients, their families, healthcare providers, and researchers to participate in an online survey for a research study on their perspectives on case definitions and cardinal symptoms of this illness. redcap.is.depaul.edu/surveys/?s=P... #MEcfs #CFS #PwME

#mecfs #MyastheniaGravis #chronicfatiguesyndrome #me #cfs

The new designs for #MEAction are inspired! A super talented volunteer, @hospmom.bsky.social, created most! (Woot woot Jess) Check out the new sayings & products!