NEWS

ME awareness month is here. Here's how to show up (at whatever battery level you have).

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Join our fight to protect Medicaid for our community!

Fury and hope can coexist. Here’s why we believe this is the year everything changes for people with ME.

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 i

#MEAction and NIH Director to Discuss Funding for ME/CFS Research Roadmap

Our year-long campaign to protect Medicaid for people with myalgic encephalomyelitis (ME) and Long COVID continues! We are pleased to share that our Advocacy Director, Ben HsuBorger, will be joining a national webinar to discuss how the H.R.1 funding bill passed by Congress last year (commonly known as the One Big Beautiful Bill) will affect disability communities. The Grassroots Project, which supports disability grassroots advocacy, networking, and leadership development,

#MEAction is fighting to protect your Medicaid access. We’re taking action in 42 states and at the federal level to ensure ME/CFS and Long COVID are recognized and protected.

We have NEWS to share about funding for the ME/CFS Research Roadmap - the NIH’s most comprehensive, strategic plan for ME/CFS research to-date.

This year’s Advocacy Week will focus on medical education.

Two caregivers share their insights from decades of caregiving for spouse, children, mother, teens and adult children with ME

Where we spend money reflects what we value. From ME research funding to Medicaid cuts, here’s why we’re speaking out, and how you can help.

We know how important this is for you.

Halfway through summer, we have so much to report about our immense, day-to-day work advocating for M.E., for you, and for each other. On the medical front, our ongoing, grant-funded project with Mayo Clinic Rochester continues to transform medical education at Mayo. Together, we have updated the ME/CFS homepage, written a Concise Clinical Review article that will debut in Mayo Clinic Proceedings with an attendant CME, and created a new diagnostic and treatment algorithm on A

#MEAction and three Long COVID organizations published a statement today urging Congress to support bipartisan legislation to establish a national task force to investigate the COVID-19 outbreak. Our organizations have also signed onto Marked By Covid’s open letter to Congress calling for the bill’s passage. Together, we are urging Congress to hold our federal health and research agencies accountable for their abject failure to be prepared for the Long COVID and ME/CFS crisis

DHSC has released an update on the progress of the work underway to support the development of a Delivery Plan on Myalgic Encephalomyelitis / Chronic Fatigue. This is dated from December 2022.You can read the full report using the link below:DHSC Information Bulletin Dec 22 FINAL MECFS updated

Sue Webber MSP’s motion about ME will be debated in the Scottish Parliament on Thursday 2nd February - and your MSPs should be there! The motion calls on the Scottish Parliament to recognise the outcomes and recommendations of the stakeholder report on ME, including education of healthcare professionals and development of specialist services. We’re pleased that 59 MSPs have given their support to the motion, and you can see if your MSP supported it on the Scottish Parliament

AIDS, ME/CFS & Long COVID activists demand Biden, Congress fund pandemic plans

White House Must Confront Global Health Nightmare of Colliding Pandemics

Congress launched ARPA-H (the Advanced Research Projects Agency for Health) this past March to focus on high-risk, high-reward research projects with the goal to solve intractable health problems.As ARPA-H is in the process of hiring its first cohort of program managers, #MEAction and a coalition of chronic disease advocacy groups have published an open letter calling for experts in infection-associated chronic illness to pursue this opportunity.Our coalition includes: #MEAct