USA: News from #MEAction

[ahimsa]

This news is about getting a grant for one of #MEAction's projects mostly but my reason for posting it is mostly to let folks know about their planned project for emergency department guidelines. I think this was announced on Bluesky at one point but I could not find a separate news item on the #MEAction website.

Big News: $15K Matching Grant for Emergency Department Project

#MEAction has just launched an in-depth emergency department project with the urgent goal to develop clinical guidelines that improve how people with ME/CFS and Long COVID are treated in emergency settings.

Every day members of our community are harmed in emergency rooms because medical professionals are not adequately educated about infections-associated diseases - and we’re working to change that!

Thank you to each and every one of you who give your time, money and resources to #MEAction so we can make a difference in the lives of people with ME and Long COVID.

There is a fundraiser page with more information:

We all know how destabilizing the emergency room can be, especially for people with infection-associated chronic illnesses like ME/CFS and Long COVID. Concerns around receiving adequate and empathetic care are so profound that many avoid seeking emergency care when they need it most. That is a dangerous reality, and one we are determined to change.

#MEAction Scientific Director Jaime Seltzer and clinicians at the Mayo Clinic have already collected invaluable data to inform this work. Soon, we will be launching a survey to expand that evidence base, and we want you to be part of it.

Your experience matters: your responses will directly shape the guidelines we develop.

 

[ahimsa]

#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.

www.meaction.net

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.

HHS is required by law to issue an interim final rule on Medicaid work requirements by June 1, deciding who will receive “medically frail” exemptions from the new work requirements.

New federal Medicaid work requirements are expected to cause approximately 10 million Americans to lose Medicaid coverage. People with myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) and Long COVID are among the most vulnerable, and among the most likely to fall through the cracks, because our communities are often not recognized as officially disabled, even though the majority of our community are too sick and disabled to work.

Federal law includes a "medically frail" exemption designed to protect people with serious medical conditions from work requirements. But states have broad flexibility to define who qualifies, and ME/CFS and Long COVID are not automatically included. Nebraska, the first state to release its work requirement policy, does not currently include ME/CFS or Long COVID on its list of automatically exempted conditions, despite direct advocacy from #MEAction at the state level.

HHS has final sign-off authority on state recommendations regarding medical frailty definitions. That means HHS can act right now to ensure that ME/CFS and Long COVID are recognized as the serious, complex medical conditions they are, and that people living with these diseases are protected.