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Actions you can take now to advance the fight for health equality:

Join the #WeAreEssential campaign. We are joining with the disability community to demand Congress recognize that the disability/chronic illness community is ESSENTIAL and must be included in the next Covid-19 packages. Join us!
Tell NIH their research plan is #NotEnough4ME. Join the #MEAction campaign to tell NIH Institute Director, Dr. Walter Koroshetz that his “plan” for Myalgic Encephalomyelitis is NOT ENOUGH for a disease that has been neglected, stigmatized, and misdirected for over 30 years! Sign the petition! Visit our campaign page for more actions.
Prevent and prepare for COVID-19. Read about the outbreak and its effects on people with ME. Learn more
Participate in our Values & Policy Initiative. #MEAction is undertaking a six-month community process to learn, engage, debate and, ultimately, devise the core tenets of our global movement for ME. Read the editorials. Engage in the conversation. Participate in the calls. Take the survey. Vote on the platforms.  Read more.
Educate your medical providers about ME! Tell them to watch Unrest for Continuing Education credit!  Read more!
Share our 2019 research summary with your medical provider, family and friends to educate them about the current ME research. Read, and educate yourself!
Participate in research studies on ME. Read about the studies that are looking to enroll people with ME.
Donate: to support #MEAction’s movement-building and advocacy work.
Read more about recent U.S. actions involving the NIH, CDC, HHS and FDA.

Create an action | Launch a petition | Start an event | Join a group | Talk to us

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Advocacy Week Local Actions

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As many of you know, Advocacy day is April 3rd in DC. Activists will be traveling from around the United States to have meetings with their elected officials to demand recognition and action for people with ME. No matter if you are in DC in person, or …

Ask Your Senators to Increase Funding for ME Research and Education

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Senator Markey is currently asking for support from his fellow Senators for TWO requests that can increase funding for ME!

These requests would include:

1) Request $9.9 million for ME programs at the CDC (Labor-HHS committee)

2) Add ME to the Peer-Reviewed Medical Research Program (Defense committee)

What our Hill champions are fighting for …

Increased Funding for ME Research and Education

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Congressmembers Zoe Lofgren and Anna Eshoo, are currently asking for support from their fellow House Members for TWO requests that can increase funding for ME!

These requests would include:

1) Request $9.9 million for ME programs at the CDC (Labor-HHS committee)

2) Add ME to the Peer-Reviewed Medical Research Program (Defense committee)

What our …

Get involved: support science and advocacy this April

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April is going to be an incredibly exciting month for advocacy and for research into ME!

The NIH is hosting a conference on ME in early April along with a Young Investigators Workshop specifically geared towards early-career investigators with interest in ME.  Concurrently, there will be a Congressional lobbying push hosted …

Enrolling: Take an online survey to give feedback on a new app for ME

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Listen to the article:

Who: Doctors from Columbia Medical center are interested in creating a mobile app called “my ME/CFS” for those with Myalgic Encephalomyelitis (ME).

What: A survey that would provide information to doctors that are aiming to create this application; the app would provide a place for individuals with ME …

Join the virtual demonstration in support of the ME debate!

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Listen to this article on #MEAction’s Soundcloud here
On Thursday afternoon, 24th January, MPs from all parties will be debating a motion put forward by Carol Monaghan MP in the House of Commons. The motion covers biomedical research funding, the suspension of GET and CBT, updated training for medical professionals and …

What can you do before this Thursday’s ME debate?

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Listen to this article on #MEAction’s Soundcloud here
This Thursday 24th January, myalgic encephalomyelitis (ME) will be discussed in the main chamber of the House of Commons, as Members of Parliament from all Parties debate a motion on ME put forward by Carol Monaghan MP.  We want this debate to be …

Take Action Now! The UK debate on ME has been granted

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Listen to this article on #MEAction’s Soundcloud here
We are delighted that Carol Monaghan MP has managed to secure a debate in Parliament on Thursday afternoon, 24th January. This debate has been confirmed by the Backbench Business Committee and will take place in the Main Chamber. Carol Monaghan has been pushing …

Apply for Stanford Medicine X Conference as ePatient or Presenter – deadline Jan. 31st

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Stanford University hosts an annual academic conference, Medicine X, every September to bring together community stakeholders, innovators and leaders in health care to empower collaborative change. This year’s Medicine X | Change conference will be held at Stanford University in Palo Alto, California on Sept. 20 – 22, 2019.
Stanford describes …

Dec. 2018 FFAME Minutes: Advocating for ME while Maintaining Privacy

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MINUTES: Friends, Family and Allies for ME (FFAME) meeting: Saturday, December 1
Primary Discussion Topic: Advocating for ME while maintaining privacy for ourselves or loved ones

For some of us, privacy isn’t an issue, as the pwME (person with myalgic encephalomyelitis) may be happy with any advocacy we can do.
Some …

All I want for Christmas is #ScienceNotStigma

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This Christmas, millions will be missing from parties and celebrations, because of the severity of ME. Yet the National Institute of Health and Care Excellence (NICE, the public body responsible for UK clinical guidelines) have just dismissed legitimate concerns of thousands of people with ME, and their friends, family and …


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Please contact your MEMBERS OF CONGRESS IMMEDIATELY and urge them to sign a bicameral letter to the Department of Health and Human Services (HHS). The joint letter – from both the House and the Senate! – (1) states that more must be done by HHS to address ME/CFS needs, (2) …