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CANARY CORPS – Alison’s Story
Alison Sbrana will be co-presenting our introduction to Canary Corps. on Wednesday. This is her story.
Dec 4, 20235 min read


CANARY CORPS – Alison's Story
Have you registered yet to join us this Wednesday, December 6th at 4pm ET / 1pm PT for a community presentation introducing the Canary Corps program?Ahead of Wednesday’s event we wanted to share with you Alison’s story. Alison Sbrana will be co-presenting this event, and much of the design of Canary Corps has been shaped by both her professional and lived experience. Her story is a sneak peek of what’s gone into the making of Canary Corps.The purpose of Wednesday’s event is t
Dec 4, 20234 min read


“#MillionsMissing is our drumbeat”
RSVP TODAY: We are hosting a preview party for the new, virtual Home of the #MillionsMissing this Sunday, September 24th, at 12 pm PT/ 3 pm ET/ 8 pm BST!We have always had to be creative in telling Our Story - the story of M.E. - to the world since so many of us cannot protest in the streets. How do we shine a light into our darkened rooms and demand the world’s attention? We started with shoes. Send in your shoes with a tag to tell your story. We will show the world that you
Sep 20, 20233 min read


#MEAction’s Summer Work Heats Up
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
Aug 16, 20233 min read


#MEAction Calls for ME & Long COVID to be Part of COVID-19 Task Force
#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
Jul 25, 20232 min read


Long COVID & ME/CFS Communities to Demonstrate TODAY on National Mall
Washington, DC – The ME/CFS and Long COVID communities will demonstrate today with the installation of 300 cots on the National Mall to represent the millions of people missing from their lives due to post-infectious disease. We are the #MillionsMissing.
May 12, 20236 min read


Creative Fundraising Initiatives for #MEAction
At #MEAction, we work to advocate for and with people with ME. As a small and growing non-profit, individuals who create and develop fundraisers for #MEAction makes a HUGE difference for the organization. Here are some examples of individuals and groups who are creating their own fundraising initiatives in support of #MEAction. 1. Starting Your Own Fundraiser Through #MEAction’s Website! People with ME, as well as caregivers have started their own fundraisers through #MEActi
May 1, 20233 min read


ME & Long COVID patients need telemedicine prescribing flexibility
#MEAction, Long COVID Justice, Strategies for High Impact and Patient-Led Research Collaborative have submitted a joint public comment to the U.S. Drug Enforcement Administration (DEA) expressing our concerns with its proposed rule for telemedicine prescribing of controlled substances when the practitioners and the patient have not had a prior in-person medical evaluation.Data shows that the rollback of telemedicine prescribing will create further barriers to essential medica
Mar 31, 20233 min read


NIH Must Not Overlook Evidence of Exercise Harm
Long COVID Exercise study must address safety, efficacy concerns.
Mar 22, 20232 min read


#MEAction & Mayo win Grant for Diagnostic Improvement
#MEAction and Mayo Clinic win SIDM for diagnostic and treatment improvement at Mayo Clinic Rochester for people with ME/CFS!
Sep 22, 20223 min read


Celebrating Postcards to Doctors: Final Report
We’re incredibly pleased to announce that we not only met but exceeded our initial goal of sending 6,000 postcards out into the world!
Jan 28, 20204 min read
#MEAction Scotland launch their Manifesto
After many, many months of writing, editing and revising, #MEAction Scotland is finally ready to launch its manifesto! Thank you to all...
Oct 28, 20182 min read
Welcome Jaime Seltzer to the #MEAction Team – Director of Scientific and Medical Outreach
We're thrilled to welcome Jaime Seltzer as our Director of Scientific and Medical Outreach.
Jun 11, 20182 min read


#MEAction Scotland Speaks at Scottish Parliament Petitions Committee – Watch the Video
#MEAction Scotland appeared before the Scottish Parliament Petitions Committee on June 7th to give evidence on its petition to review treatment of ME patients in Scotland.
Jun 7, 20181 min read
Meet the Millions Missing – Protest to Raise Awareness of ME in Scotland
Press Release Details of the Event Millions Missing Edinburgh protest is being held from 1200-1400 on Friday 12th May outside the...
May 12, 20174 min read
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