@alemmatthees.bsky.social#MEAction is fighting for the ME/CFS Research Roadmap to be allocated $50 million in appropriations from the US Congress and working to secure funding from the NIH: www.meaction.net/post/we-re-c... . But until that happens this meme applies:
@wamesmecfs.bsky.socialThe #MEAction Caregivers Support Group invites caregivers of people with ME/CFS or Long COVID (& associated conditions) to connect, share & support each other via zoom - third Sunday of the month. 17 Oct @ 6.30pm BST Contact [email protected]
tinyurl.com/563wad5x
@laurajmg.bsky.social2. Donate, if you can spare a dime and signal-boost fundraisers. I recommend #MEAction #MillionsMissing, the Open Medicine Foundation omf.ngo, & Dr. Ron Davis's search for a cure at Stanford med.stanford.edu/MECFS.
(hopefully I haven't broken those URL links!)
@wamesmecfs.bsky.socialFacebook support group: #MEAction Seniors Connect. People with ME who have been sick for decades and are aging, share information and support each other.
tinyurl.com/38pjp53x
@wamesmecfs.bsky.social#MEAction Partner Caregivers Support Group invites caregivers who are spouses, partners etc of ppl with ME/CFS or Long COVID (& associated conditions) to connect, share & support each other via zoom - first Sunday of the month. 4 Oct @ 8pm BST Contact [email protected]
tinyurl.com/mrydhna2
@exceedhergrasp1.bsky.socialWe've seen a distinct drop in interest in these conditions as people have memory-holed COVID; they'd like to forget infection-associated chronic conditions, but they're impacting everyone, including kids. I'm the Scientific Director at #MEAction, and I advocate for #MECFS, #LongCOVID, & other IACCs.
@judithstark.bsky.socialWe at #MEAction Scotland campaigned against NHS Glasgow offering the Lightning Process and were told last year that they had stopped.
@madelinenerd.bsky.socialNew podcast episode: MASKING
open.spotify.com/episode/7BEa...
Where I talk about how I mask pain and survival fear. And how that tends to work with persons with disabilities
#MyalgicEncephalomyelitis #canpoli #disability #MyalgicE #pwME #chronicpain #fibromyalgia #MEAction #Canada
@meactnet.bsky.social#MEAction's next #caregiver support call is Sept. 19 at 1:30 pm ET - 3:30 pm ET.
We welcome caregivers of people w/ chronic diseases such as #MyalgicEncephalomyelitis (ME), #LongCOVID, #MCAS, etc!
To join the calls, please email [email protected] at we will get you set up!
@exceedhergrasp1.bsky.social@meactnet.bsky.social#MEAction prepared comments & will send a detailed letter to NIAID by email.
Our central concern is that the proposal describes expected benefits but does not provide enough concrete information to determine whether eliminating DCR will preserve clinical research capacity & scientific continuity.
@meactnet.bsky.socialNIH UPDATE: NIAID has released a proposal to eliminate its Division of Clinical Research (DCR) & move the division’s programs and responsibilities into other parts of the Institute.
#MEAction has sent a detailed letter to NIAID by email in response to the proposal.
www.meaction.net/post/nationa...
@meactnet.bsky.socialLast week, #MEAction staff Ben HusuBorger and Therese Russo spoke with a STAT journalist, Isabella Cueto, for more than an hour, providing background for her article about the new Medicaid tiers. @isabellacueto.bsky.social www.statnews.com/2026/09/11/m...
@exceedhergrasp1.bsky.socialArticle incoming from #MEAction on this, but for now I need y'all to know that while the comment box isn't marked at all, it has a character or word limit: about 4000 characters (or 525 words) seems to be it.
Just so you don't write a huge thing and end up chopping it down, like I did.
@wamesmecfs.bsky.social#MEAction welcomes caregivers of people with chronic diseases such as ME, Long COVID, MCAS, etc. to an online international support group on Sat 19 Sep, 6.30 pm BST [held 3rd Sat each month] [email protected]
tinyurl.com/4y29j5yn
@bhanlon15.bsky.socialSTAT News: 'Medicaid will let states use ‘tiers’ to determine medical frailty'
“We’re looking at two cliffs,” #MEAction Campaigns Director Ben HusuBorger told STAT
@meactnet.bsky.socialDeadline: TONIGHT Sept. 8th. 11:59 pm ET.
#MEAction is excited to be partnering with the Writers Guild Initiative (WGI) again to offer creative writing workshops for people with ME and Long COVID.
30 slots available.
DETAILS: https://ow.ly/nTJb50ZGCFF
Thank you, WGI!
@meactionuk.bsky.socialYou can watch a clip above of #MEAction Scotland trustee, Janet Sylvester, giving her introductory remarks.
@meactionscotland.bsky.socialYou can watch a clip above of #MEAction Scotland trustee, Janet Sylvester, giving her introductory remarks.
@meactionuk.bsky.social#MEAction Scotland was part of a group drawn from third sector organisations that included the Health and Social Care Alliance Scotland, the Scottish Association for Mental Health, @longcovidscot.bsky.social and the Chronic Pain Group