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!

#telehealth legislation expires (AGAIN) in the US at the end of this month (Sept 25) If it is within your envelope, join #MEAction for a call party Wed, Sept 17th @ 3pmET/12pm PT to contact your elected officials. Help us tell Congress how vitally important Telehealth is to our Community

RECOVER-TLC 2nd annual workshop goals: - Update community - Solicit community feedback on key aspects of TLC- intervention selections, protocol concepts/design, collaborations. -Continue to highlight opportunities for additional clinical trials #LongCovid #RecoverTLC #pwME

Today the importance of donations to #MEAction is especially clear. In addition to the brilliant reporting from Scientific Director Jaime Seltzer, we have the announcement of a new staff member for the Minnesota Home Health Navigation Program. To continue this good work, please donate if you can.

If you don't have ME/CFS or Long Covid but want to help someone who does: What helps: fluids, electrolytes, pacing What does not help: exercise #science #myalgicencephalomyelitis #chronicfatiguesyndrome #longcovid

In their own words a "first draft" "humble guide with product suggestions of #MECFS patients" Provides many types of suggestions, is not a list of links (that would be too long!)

Like a Fallen Feather by Tim Murphy (please tag if you know Tim) is one of the many powerful pieces of art available in our free, virtual art gallery. The Severe ME Artists Project 2025 is available now! www.meartistsproject.com/severe-me-ar... #pwME #MECFS #LongCovid #disability #SevereME

Just sharing — these are the most comfortable pants I own. Cuffs don’t ride up, even in bed, insides are soft and not itchy, waistband is comfy. And they’re a fundraiser for @meactnet.bsky.social plus walking (er, lying down) advocacy! www.bonfire.com/millionsmiss...

Even when the infection clears, COVID doesn’t always end. Millions are living with Long COVID—facing fatigue, brain fog, breathing issues, heart problems, and more. These symptoms can upend daily life, and too often they’re overlooked or dismissed.

#MEAction will be hosting a Community Watch Party for this year’s Severe ME Artists Project Video Gallery on Thursday, August 28th at 4 pm PT/7 pm ET. We are trying to offer as many ways to view the art as possible. RSVP: www.meartistsproject.com/event-detail... #pwME #SevereME #Art #Artist

The petition for appropriate care for Sanne is past 2,500 sig. Let’s join #pwME #MEAwareness #MECFS #GreatestMEdicalScandal forces 🙏🏻. We can sign from anywhere in the 🌎 @meactnet.bsky.social @openmedf.bsky.social @patientled.bsky.social The text reads “University hospitals refuse ..

Calling all #NEISvoid, and all #MedSky folks. I have a series of questions I'd like to ask and would love if you could check out the thread and spread the word so we get good responses. This is a thread where you CAN reshare every part if you like, because each poses a different question ❤️🧵

Today, August 8, is #SevereMEday. (Post 1 of 3) The Severe Myalgic Encephalomyelitis (ME) Day of Understanding and Remembrance was started in 2013 1/ I remain one of the #MillionsMissing #SevereME #pwME #UnitedForME #MyalgicE #MEcfs #MyalgicEncephalomyelitis #StrongerTogether #CanYouSeeMeNow

"One of the hardest things with #MECFS is watching friends grow, evolve, achieve goals, pursue dreams whilst you are stuck. You are happy for them, but desperately want your journey growing beside them. Despite having the spirit, the means are lacking." Credit: Ror @VitalRor #SevereME #UnitedForME

Ahead of this Severe ME Day — August 8th — the World ME Alliance is proud to launch a vital new publication: Supporting People with Severe and Very Severe ME/CFS: A Resource Guide for Clinicians All over the world, Severe ME patients struggle to get the medical care they need. #SevereME #ME/CFS

Understanding severe ME by the world ME alliance “Severe and very severe ME/CFS represents one of the most profound states of disability found in medicine.” – @batemanhornecenter.bsky.social , USA worldmealliance.org/what-is-me/s... #ME/Cfs #pwME #SevereME #SevereMEDay #ICDG93.3 #ICDG93.32

Story time with Pedro Pascal: #SevereME & the #GreatestMEdicalScandal The story of #MyalgicEncephalomyelitis (Tap full screen for lyrics & music) References: medium.com/@mayalindema...

I have #SevereME I struggle to even sit up to stand/walk is difficult I lie in bed 24-7 always in pain always struggling to care for myself I live alone without support yet I'm far from unique we're the #MissingMillions we exist, just barely but you don't see us please, open your eyes #UnitedForME

#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

Our initial DNA results! DecodeME have discovered that people with an ME/CFS diagnosis have significant genetic differences compared to the general population. - Summary of our results: shorturl.at/pgsjk Check out our full preprint paper: shorturl.at/VwN3s

Big news from me! After years of being too sick to do any significant writing, I'm now well enough to launch a Substack, The Weighing. I'll be writing about the clean energy transition in New Mexico, liberal education, and severe myalgic encephalomyelitis. Join me! open.substack.com/pub/jrehmeye...

We have a problem. People aren’t trusting health and science institutions. But there is a path forward, as four Yale experts laid out in this @nejm.org op-ed this week: 2/10

When time loses all meaning & you are stuck in the void it can be really hard to find your voice Thanks Tom @tomkindlon.bsky.social for leaving a light on #SevereME #SevereMEAwareness

"The tick detective is excited to get your parasites in the mail" (Baltimore Banner) www.thebaltimorebanner.com/community/pu...

Let’s bust some myths: ❌ PIP fraud rate? Just 0.2%. ❌ “Economic inactivity”? Most disabled people pay taxes, or did before illness/#disability. ✅ Benefits aren’t wasted. They fuel the economy. But you wouldn’t know it from the headlines. www.mefoggydog.org/2025/07/20/l... #pwME

Severe ME Artists Project 2025 from @meactnet.bsky.social www.meaction.net/2025/07/10/s... Deadline of July 24 is coming up Image is from the AMMES July 2025 email newsletter #SevereME #MEcfs #CFS #PwME

Julia Doubleday on #LongCovid and #disability community and #Medicaid work requirements. substack.com/@thegauntlet...

Sharing here that Jamie @followingmybody.bsky.social prepared a google drive of studies about menstruation and COVID (there are a lot of them)! Jamie works with people to chart their cycles and has seen a lot of disruption post COVID infection. #LongCovid #Covid drive.google.com/drive/folder...

The "Big Beautiful Bill" will take away insurance from 17 million people, mostly from people on Medicaid. I want to tell you how losing Medicaid would impact me directly.…If I lost Medicaid, my parents would have to sell our house… #disabled New post on my blog: www.whitneydafoe.com/mecfs/?post=...

#MedEd event -FREE CME/CNE credits for a virtual facilitated discussion on #MECFS -TOMORROW! events.jhu.edu/form/me-cfs When: July 9th at 12p EST Where: Zoom Who: Johns Hopkins, Stanford & Karina (#pwME) What: Overview of patience experience & current research #MedTwitter #pwME

Script now applies to Representatives (AGAIN). Contact your Reps. Contact other Reps in your state. Contact Reps in other states. What you can do, do. This is the final stop before it goes to the President Be heard. (if possible). Be heard for those who can't. www.meactions.org/medicaid

I’m looking to speak with people about their use of metformin for treating COVID. This includes taking metformin during an active infection, or to treat Long COVID. If this sounds like you, please email me at [email protected]

My daughter relies on Medicaid. We don't "get" Medicaid. We don't receive a check from Medicaid. Medicaid covers her life-saving medical expenses. Medicaid is health insurance. Medicaid is health care. That's what Medicaid is. And that's why we need our senators to #VoteNo and #ProtectMedicaid.

1,469,000 kids & adults in MD have Medicaid That's in a state with ~6million people. 36% are kids 17% have 3 *or more* chronic illnesses 72% of Maryland adults with Medicaid work (Hey, 17% + 72% = 99%) Find the @kff.bsky.social Medicaid resource for your state files.kff.org/attachment/f...

It’s hard to find people on Medicaid who Republicans claim sit at home playing video games. But it’s easy to find vulnerable people with disabilities who worry work requirements would cost them their health insurance. kffhealthnews.org/news/article...

Help needed for young adult with rapidly worsening ME/CFS in Temecula, CA. Bedbound with increasingly very severe symptoms, needs compassionate hospital care or skilled nursing support. Any Southern CA lived experience, hospital, supportive, or nursing home recommendations? [email protected].

I wonder how many millions will die because of #Medicaid cuts and closures of rural hospitals? Also see this sad story about #LongCovid care centers closing because of funding cuts: thesicktimes.org/2025/06/24/u... All for $$$ for the filthy rich. #Eugenics

#MEAction #Maryland advocates were proud to be part of @solveme.bsky.social Advocacy Week Together with passionate #pwME, pw #LongCovid & caregivers, we met today with MD Reps to promote HR3906 Medical Research for Our Troops Act which restores CDMRP funding for unique, non-duplicative research