This is noon eastern! Sorry! When I put it in the converter I did not notice it was using MST (as Arizona uses) not MDT! When you register, it should give you the correct time for your time zone!

#MEAction Network@meactnet.bsky.social · 24h ago

Join the #UnitedForME collaborative (Bateman Horne Center, #MEAction Network, Open Medicine Foundation (OMF), Solve M.E.) with WIMEL guests for a special "Coffee" with a Clinician in honor of Severe ME Awareness Month on Aug 12 at 1 pm ET. Register: https://ow.ly/eV4u50ZwhXA #SevereME

Join the #UnitedForME collaborative (Bateman Horne Center, #MEAction Network, Open Medicine Foundation (OMF), Solve M.E.) with WIMEL guests for a special "Coffee" with a Clinician in honor of Severe ME Awareness Month on Aug 12 at 1 pm ET. Register: https://ow.ly/eV4u50ZwhXA #SevereME

This #MedicaidMonday, we want to say a huge THANK YOU to all who submitted comments to CMS regarding Medicaid work requirements. OVER 25k comments are showing! Thank you for giving your precious time and energy. We will be bringing you an update & next steps later this week! #Medicaid #pwME

Our community is fighting every day for people w/ myalgic encephalomyelitis. In August we especially take time to honor the 25% living with the most severe form of this disease & remember those we have lost. Let us pause together as Severe ME Awareness Month begins: https://ow.ly/Wz7N50ZvTVe

One week ago to August 8, #SEVEREMEDAY I have a Pinterest board with 714 pins on #severeMECFS here ie.pinterest.com/tomkindlon/m... that could be shared around. It mainly contains images but also links to videos & articles You don't need to be on Pinterest #SevereME #MEcfs #PwME

Gwynn joined us in DC for #MillionsMissing. She shared Lisa’s personal essay from the new book “What is Myalgic Encephalomyelitis Like?" Lisa so powerfully shared her story of life with severe ME. Full video: youtu.be/-M5sCn1ftqw WIMEL book of essays: tinyurl.com/WIMEL #PwME #SevereME

It’s August now and the official Severe ME Awareness Day is the 8th of August. In past years our community has talked about how a single day for severe ME is not enough. 1/5 #SevereME #MECFS #pwME #Photography nikosuvisto.com/this-is-how-...

August is #SevereMEAwarenessMonth. We will be amplifying the voices of those with #SevereME all month. Feel free to tag us @meactnet & use #'s included here. Our Severe ME Artists Project releases on Aug. 8- #SevereMEDay. We join #UnitedForME orgs on Aug 12. More info soon. #pwME

We are excited to bring you a new workshop with award-winning & bestselling author Marisa Renee Lee! Register now for the free virtual workshop on navigating the uncertainty of chronic illness on August 14th at 12 pm ET: https://ow.ly/Kqx550ZqRNx #pwME #LongCovid #MECFS #spoonie #author

FINAL DAY TOMORROW- JULY 31st! We have a template that walks you through submitting a comment to CMS regarding their Interim Final Rule on Medicaid work requirements step-by-step. http://ow.ly/hoVX50ZkQhc #Medicaid #pwME #pwLC #Disability

Quick update regarding the Emergency Department Survey! We have had such a large volume of responses that we will be closing the survey at 1 pm ET tomorrow (7/30). No new responses needed. If you have started the survey and want to submit it, please finish today if able. THANK YOU!

We're closing the survey out in 24 hrs! We have more than enough responses. A heads up so that, if you began taking the survey and would like to complete it, you know we're closing tomorrow at 1pm ET.

#MEAction Network@meactnet.bsky.social · 2w ago

Are you someone with myalgic encephalomyelitis/chronic fatigue syndrome #MECFS or #LongCOVID who’s been to the emergency room at least once over the past 10 years for your symptoms? Clinical care needs your voice! Take the Emergency Department research survey: surveys.mayoclinic.org/jfe/form/SV_...

#MEAction has submitted our public comment to CMS about their new Medicaid work requirements regulations. https://ow.ly/hnvN50ZuqiW Take action with us! We provide 3 ways in article including submitting your comment by July 31st w/ our template. #Medicaid #pwME #MECFS #Disability #FrailAndFurious

If you have a diagnosis of #MECFS or #LongCOVID and have been to the emergency room in the past 10 years for your symptoms, take the Emergency Department survey: https://ow.ly/QlUt50ZtCoN The survey has 100+ unique responses already! We're aiming for 150 before we close. #pwME #MEAction

Whoo Hoo! Back again to talk about CMS public comments!

#MEAction Network@meactnet.bsky.social · last wk.

CoRy the Cat here this Medicaid Monday on how to submit a public comment to CMS using MEAction's handy template. Deadline is July 31st, 11:59 pm ET, so be sure to get those in before the window closes! https://ow.ly/NSTX50ZsoLb A huge thank you to volunteer CoRy Wysz 💤 for walking us through it!

The survey has 100+ unique emergency room narrative responses already! But we're aiming for 150 before we close. If you have a diagnosis of #MECFS or #LongCOVID and have been to the emergency room in the past 10 yrs for your symptoms, I hope you'll take the survey. And if you don't, please share!

#MEAction Network@meactnet.bsky.social · 2w ago

Are you someone with myalgic encephalomyelitis/chronic fatigue syndrome #MECFS or #LongCOVID who’s been to the emergency room at least once over the past 10 years for your symptoms? Clinical care needs your voice! Take the Emergency Department research survey: surveys.mayoclinic.org/jfe/form/SV_...

CoRy the Cat here this Medicaid Monday on how to submit a public comment to CMS using MEAction's handy template. Deadline is July 31st, 11:59 pm ET, so be sure to get those in before the window closes! https://ow.ly/NSTX50ZsoLb A huge thank you to volunteer CoRy Wysz 💤 for walking us through it!

Today is the 36th Anniversary of the Americans with Disabilities Act, one of the most important civil rights laws for disabled people. Celebrate the anniversary of the ADA by reading up on your rights with our Easy Read and plain language toolkit: autisticadvocacy.org/policy/toolk...

Grateful for our ancestors, elders, and all those in the movement for fighting for the ADA and now, to protect and expand our hard-won civil rights.

Disability Policy Foundry@disabilitypolicy.bsky.social · last wk.

We exist because of the Americans with Disabilities Act (ADA) and to build upon it. As many in the disability community say - it’s the floor, not the ceiling!💜

For Americans with Disabilities Act anniversary, sharing this interview I did with ADA's primary author Tony Coelho last year at @motherjones.com. He shared the importance of bipartisanship in getting it across the line. Something that seems impossible now. www.motherjones.com/politics/202...

The ADA is turning 35—and it's in Trump's crosshairs

Tony Coelho, the Americans With Disabilities Act's main author, sees a new wave of threats looming for disability rights.

motherjones.com

36 years ago today, the ADA was signed into law by President George H.W. Bush (with AAPD co-founder Justin Dart by his side!). The ADA transformed this country and access to public life for disabled people. Today, we are still fighting to protect the ADA and other hard-fought disability rights.

Today is the final day to submit your art to our Severe ME Artists Project! All the info you need is here: https://www.meaction.net/post/severe-me-artists-project-2026-call-for-entries We are here to help! Just email us if you need assistance: sMEartistsproject@meaction.net. #SevereME #pwME

Positive updates! - We are closer than ever to getting the ME/CFS Research Roadmap funded. - The Office of the Surgeon General is ready to work with us. Take action: -Leave a public comment about Medicaid. - Join our advocacy working group. - Donate More info & links: https://ow.ly/gkv150Zs2gx

We are excited to announce our #MEAction Artist Salon 2026 will be held on November 22 at 3 pm ET. This will be a live virtual space to share your art! We will share sign ups soon but wanted you to know to save the date! #art #artist #pwME #MECFS #MyalgicE

Not all heroes wear capes- some wear headphones & attend presentations to make sure we have the most up-to-date information! US Advocacy Director, Ben HsuBorger, is attending multiple presentations on CMS work requirements today. Submit your comment to CMS by July 31! https://ow.ly/TLas50Zrw9y

Gentle reminder that your entry for the Severe ME Artists Project is due this Friday- July 24th. We are here to help. Email us at sMEartistsproject@meaction.net! All information: https://www.meaction.net/post/severe-me-artists-project-2026-call-for-entries #SevereME #PwME #art

We are excited to bring you a new workshop with award-winning & bestselling author Marisa Renee Lee! Register now for the free virtual workshop on navigating the uncertainty of chronic illness on August 14th at 12 pm ET: https://ow.ly/Kqx550ZqRNx #pwME #LongCovid #MECFS #spoonie #author

Are you someone with myalgic encephalomyelitis/chronic fatigue syndrome #MECFS or #LongCOVID who’s been to the emergency room at least once over the past 10 years for your symptoms? Clinical care needs your voice! Take the Emergency Department research survey: surveys.mayoclinic.org/jfe/form/SV_...

The deadline to submit a public comment to CMS is fast approaching- July 31st! We so appreciate Deja, the lovely service dog, offering her writing services. However, for those without the canine help, we have a template! https://ow.ly/gRca50Zq7xc #PwME #Disability #Medicaid #MECFS

Got a few minutes this weekend? We have a template that walks you through submitting a comment to CMS regarding their Interim Final Rule on Medicaid work requirements. Deadline July 31! Our template walks you through step-by-step. http://ow.ly/hoVX50ZkQhc #Medicaid #pwME #pwLC