Actions Archives

Category: Actions

Email Doctor Unger about the Misinformation at CDC

May 27, 2022 4 Comments

People with ME deserve accurate & clear ME/CFS education from the Centers for Disease Control, not recycling of discredited recommendations for Cognitive Behavioral Therapy (CBT) and Graded Exercise Therapy (GET). The invited speaker at May 13th’s CDC Stakeholder Engagement & Communication (SEC) Call presented this slide on ME/CFS management. Failing the #MillionsMissing yet again! Information

New Volunteer Leadership Program Led by Experts!

May 10, 2022 1 Comment

We are thrilled to announce that Chimére Smith and Terri Wilder will be joining #MEAction as consultants to execute a new volunteer leadership training program funded by the Ford Foundation! We are so thrilled that we will be able to expand our volunteer programs to include robust training and provide fulfilling roles and opportunities for

Research Update: The NIH Intramural ME/CFS Study

May 4, 2022 12 Comments

National Institutes of Health researchers who began what may be the deepest biological investigation ever of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) are writing up their findings and plan to circulate a draft among their large team of scientists and physicians for feedback soon. “The study will help patients and should move the field forward in

#MEAction Meets with the Department of Labor

May 4, 2022 No Comments

#MEAction continues our advocacy for the #MillionsMissing in a recent meeting with the Office of Disability Employment Policy (ODEP) at the U.S. Department of Labor (DOL) where we presented on community issues affecting people with ME and Long COVID and offered policy recommendations that DOL can take to address them. President Biden’s Memorandum tasks DOL

Call-to-action for California: Centers of Excellence

May 2, 2022 No Comments

We have a golden opportunity to secure substantial funds to address the clinical care crisis in ME/CFS and Long COVID, but your help is needed NOW. #MEAction and the Patient-Led Research Collaborative have put together a proposal that calls for the State of California to appropriate $120 million for Centers of Excellence in Long COVID along

Elevating stories of the #MillionsMissing to HHS leadership

April 20, 2022 No Comments

#MEAction is advancing ME/CFS advocacy efforts through our ongoing engagement with U.S. federal agencies, including at the Department of Health and Human Services (HHS). We continue to fight for our government to do more to meet the needs of people with ME, and to ensure that the evolving Long COVID federal response includes ME/CFS. Read

You can Still Help Madeline!

March 1, 2022 No Comments

“Madeline” is a woman who has been suffering with a post viral syndrome for 40 years which includes Severe Myalgic Encephalomyelitis (ME) and fibromyalgia. Madeline lives in British Columbia, Canada and she urgently needs your help. There is a need to seek alternative medical treatments due to the lack of coverage for treatments within the

#MEAction Continues to Get Press for ME

February 23, 2022 No Comments

#MEAction continues to prioritize getting ME in the press. We are very thankful to be featured in USA Today, North Jersey, New York Times, Infection Control Today, Times-Herald and Well+Good, all in the last few weeks! Our press reach continues to focus on multiple audiences, including scientists and medical practitioners, the disability and chronic illness

NIH Comes up Short Once Again

February 17, 2022 7 Comments

No Increase in Funding in Latest Plan for ME/CFS Collaborative Research Centers The National Institutes of Health (NIH) has announced their intent to extend the ME/CFS Collaborative Research Center (CRC) program, first launched in 2017, beyond its initial 5-year lifetime. They have issued a $7.1M annual funding opportunity for the ME/CFS CRCs, and another $500K

An Update from #MEAction

February 11, 2022 No Comments

#MEAction has been a leader in the fight for health equity for people with Myalgic Encephalomyelitis for the past six years, as led by our visionary co-founder and first executive director, Jen Brea, and then by our current executive director, Julia Miele, over the past year. Julia has helped our growing organization streamline our processes,