Mastodawn

Congress has mandated that Medicaid recipients must work 80 hours a month unless they can prove they're “medically frail." This letter urges HHS to recognize people with ME/CFS & Long COVID as “medically frail" to protect their Medicaid access.

https://www.meaction.net/savemedicaid

17/n

@mecfs @longcovid

#MEcfs #LongCovid #Medicaid #HHS #FrailAndFurious

Show thread

Ahimsa 4d ago

Another ME/CFS group is #MEAction. They've done great advocacy work over the years, including this protest in 2023. They put 300 cots on the lawn at the Washington Monument.

People with ME/CFS or Long Covid sent in pillowcases with personalized messages - you can see some of the pillows in this video.

Video from the event:

https://www.youtube.com/watch?v=FULqhB--k7k

Website:

https://storyofmillionsmissing.org/dc-protest/

This event got good press coverage.

13/n

@mecfs @longcovid

#MEcfs #LongCovid #MEAwarenessDay #WorldMEDay

#MillionsMissing 2023

YouTube

Show thread

Ahimsa 4d ago

I'll start by explaining that ME/CFS (name used by most groups in the USA) stands for "myalgic encephalomyelitis / chronic fatigue syndrome"

Here are two links with an overview of ME/CFS

1) "What is ME?" from #MEAction

https://www.meaction.net/what-is-me

2) "Introduction to ME/CFS" from the Science for ME forum

https://www.s4me.info/threads/science-for-me-fact-sheets.43310/#post-596527

Many folks w/ Long Covid have similar symptoms, some meet the ME/CFS diagnostic criteria

2/n

@mecfs @longcovid

#MEcfs #LongCovid #MillionsMissing #MEAwarenessDay

Tom Kindlon 5d ago

#MEAction Urges HHS to Exempt ME/CFS and Long COVID Communities from Medicaid Work Requirements

https://www.meaction.net/post/meaction-urges-hhs-to-exempt-me-cfs-and-long-covid-communities-from-medicaid-work-requirements

An art installation and educational gathering outside HHS headquarters is scheduled for May 12.

#MEcfs #PwME @mecfs

#MEAction Urges HHS to Exempt ME/CFS and Long COVID Communities from Medicaid Work Requirements

On May 12th, the ME/CFS and Long COVID community are gathering outside the Department of Health and Human Services to call on HHS policymakers to intervene before tens of thousands of people with the debilitating diseases of ME/CFS and Long COVID lose access to the healthcare they need to survive.

#MEAction

Tom Kindlon May 8

Mayo Algorithm’s Effect on #MECFS Care

https://www.meaction.net/post/meaction-mayo-algorithm-s-effect-on-me-cfs-care

A new research paper has been published which evaluates the "care process algorithm for ME/CFS" added to the AskMayoExpert tool. This article also discusses other collaborative work #MEAction has done with the Mayo Clinic

@mecfs #pwme

#MEAction + Mayo Algorithm’s Effect on ME/CFS Care

We have a new research paper out, and it marks an important milestone in a collaboration that set out to improve care for people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The paper is co-first-authored by Jaime Seltzer, Scientific Director at #MEAction, and Dr. Stephanie Grach, an Assistant Professor of Medicine at Mayo Clinic Rochester, and a clinician-researcher specializing in ME/CFS care.Through a small grant from the Society to Improve Diagnosis in Medicine (SIDM), #

#MEAction

Show thread

Ahimsa May 6

@mecfs
More links from #MEAction:

USA:

"Join us in person at HHS in Washington D.C. for an art installation and storytelling session"

https://www.meaction.net/millionsmissing26-usa

UK:

https://www.meaction.net/millionsmissing26-uk

Global:

https://www.meaction.net/millionsmissing26-global

2/2

@mecfs

#MEcfs #PwME #MillionsMissing #FrailAndFurious #MEAwareness

#MILLIONSMISSING USA | #MEAction

#MEAction is dedicated to taking action in places that affect people with ME, Long COVID, and other chronic illnesses. Join us!

#MEAction

Ahimsa May 6

🚨 One week until May 12, International ME/CFS Awareness Day!

ME/CFS = myalgic encephalomyelitis / chronic fatigue syndrome

This toolkit from #MEAction has a list of actions, sorted by battery level, for the week of May 9-16:

https://docs.google.com/document/d/1uJflVh8PP209MPEYSxeVw1SmFWlez0Gox1C9B8y98VY/

If all you can do next week is rest, that's OK!

But if you can, please like and boost posts about ME/CFS - look for hashtags #MillionsMissing & #FrailAndFurious

Or share your story - see toolkit for tips!

1/2

@mecfs

#MEcfs #PwME

2026 #MillionsMissing Take Action Toolkit

#MillionsMissing 2026 Toolkit Governments and healthcare systems around the world fail to classify myalgic encephalomyelitis (ME) as a serious, complex medical condition, leading to significant neglect in medical care and social services. Over and over again, people with ME and Long COVID are ...

Google Docs

Show thread

Ahimsa May 5

✅ One concrete action you can do to help patients is to sign on to the letter that #MEAction has sent to RFK Jr, Secretary of HHS, urging him to recognize people with ME/CFS and Long COVID as “medically frail” so that access to Medicaid is protected.

"Protect Medicaid Access"

https://actionnetwork.org/petitions/freakin-frail?mc_cid=c993407feb

@mecfs @longcovid

#USPol #Medicaid #MEcfs #LongCovid #Disability #ChronicIllness #FrailAndFurious