@meactnet.bsky.social
A global network of people empowering one another to fight for equity for myalgic encephalomyelitis. Home of the #MillionsMissing linktr.ee/meactnet
#pwME #MyalgicEncephalomyelitis #LongCovid #MECFS #ChronicIllness #DisabilityJustice
@meactnet.bsky.socialThe 1st webinar in the ME/CFS Exchange Webinar Series is Thursday, Oct. 8 at 1 pm ET.
It will focus on post-acute infection symptoms. Registration required: https://ow.ly/2ABp50ZOPKP
Hosted by NIH NINDS in partnership with MECFSnet.
@meactnet.bsky.socialWe are thrilled to bring you 2 new webinars from Denise Lopez- Majano & Kim Moy. "Things We Caregivers Wish We Had Known" w/ Denise on Nov. 1 at 3pm ET. “Being on the Same Team: Strengthening Relationships Through Chronic Illness” w/ Kim on Nov. 15 at 3 pm ET. Registration coming soon!
@exceedhergrasp1.bsky.socialReposted by @meactnet.bsky.socialOur paper about the challenges and opportunities in decentralized clinical trials for #LongCOVID is out! We discuss the regulatory, clinical, & disease-specific challenges we faced in building a clinical trial network for Long COVID.
Please read and share with your networks! 🧪
@meactnet.bsky.socialPlease note the title of webinar and date are switched in the graphic. The dates and title are correct IN THE POST. (Doing too many things at one time- sorry!)
@meactnet.bsky.socialWe are thrilled to bring you 2 new webinars from Denise Lopez- Majano & Kim Moy. "Things We Caregivers Wish We Had Known" w/ Denise on Nov. 1 at 3pm ET. “Being on the Same Team: Strengthening Relationships Through Chronic Illness” w/ Kim on Nov. 15 at 3 pm ET. Registration coming soon!
@meactnet.bsky.socialWe are delighted to bring you this new campaign at the request of our amazing caregiver volunteer Denise Lopez-Majano. Denise is turning 70 and wants to help spread kindness throughout our community - 70 acts of kindness by December 7th! DETAILS: https://ow.ly/1IPH50ZTE55
#pwMe #Caregiver
@meactnet.bsky.socialWe're excited to bring you a new art workshop on Oct. 29 at 12 PM EST. We have a Halloween theme to celebrate spooky season! One of our wonderful volunteers & #pwME, Orion Romero, will host. https://ow.ly/2zFU50ZTl4T
All you need is pencil, paper & way to join online!
@meactnet.bsky.socialMEAction’s Partner #Caregiver Support Call led by Kim Moy of Caregiver Wisdom is coming up Oct 4th at 12 pm PDT /8 pm BST. All caregivers welcome. To join, email [email protected].
Longtime community member & caregiver Charley Kakel will lead our conversation focusing on Micro-Acts of Joy.
@meactnet.bsky.socialDealing with Uncertainty and Chronic Illness -A Workshop with Marisa Renee Lee is now available to watch! https://youtu.be/gopHHk_4R4c
We had a meaningful time coming together as a community. Huge thanks to Lee (author of Grief is Love and Waiting for Dawn) for leading this workshop. #pwME #pwLC
@meactnet.bsky.socialIf you are interested and capable of sharing more about your MEdicaid story, we'd love to hear it at [email protected].
@meactnet.bsky.socialHi there! MEAction is reaching out to every Medicaid agency in the states rolling out work requirements, which includes Missouri. Did you see the ways to take action at the bottom of the article? Feel free to reach out to [email protected]. www.meaction.net/post/making-...
@meactnet.bsky.socialMEpedia is going strong-- we just received notice that MEpedia reached 20,000 clicks from Google search in the past 28 days alone!
Your support helps important knowledge get in the right hands. Check us out at www.me-pedia.org!
@pumpkinstars.bsky.socialReposted by @meactnet.bsky.socialthank you to the advocates fighting g for all of us with #MECFS
I am in california and will eventually need state support again. Your courage and strength to do these taxing things help us all 💛
thank you to everyone
@amberunmasked.bsky.socialReposted by @meactnet.bsky.social@mikiesherrill.bsky.social NJ needs to get on this. Since receiving mail that under the new "work rules" I would lose my coverage, I've been dreading being uninsured again. MC has been the only reason I have seen doctors, the dentist, and had tests illuminating an incurable disease not listed here.
@meactnet.bsky.socialFind ways to get involved at www.meaction.net/post/making-...
* New to this campaign? MEAction is leading the #FrailAndFurious campaign to protect Medicaid access for people with ME/CFS, Long COVID, and other infection-associated chronic conditions (IACCs).
@meactnet.bsky.socialAdvocates have participated in stakeholder meetings & webinars in 6 states, bringing the voices & needs of people with ME/CFS & Long COVID into the rooms where these decisions are being made. Our advocacy has opened new doors to advance recognition of ME/CFS + w/ state public health leadership.
@meactnet.bsky.social@meactnet.bsky.socialMedicaid leaders in Pennsylvania & North Carolina have confirmed that ME/CFS, Long COVID, MCAS, POTS, & hEDS are on their lists of conditions that may qualify for the medical frailty exemption—PA has included ME/CFS as a Tier 1 condition, meaning an ME/CFS diagnosis alone can establish eligibility.
@meactnet.bsky.socialIt is #MedicaidMonday and we are back with #FrailAndFurious campaign* updates. We have been busy and we want to make sure we share the wins along the way!
Full details: www.meaction.net/post/making-...
In the past weeks, MEAction advocates have been making real progress across the country.
@meactnet.bsky.social"**PST Timings are adjusted for Summertime according to Pacific Standard Time. *GMT timings are adjusted for British Summer Time. Please check your local times in Spring and Autumn."
