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Category Archives: Actions

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 ...

Contact your CONGRESSIONAL REPRESENTATIVES now!

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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) ...

Research: supporting advocacy orgs yields huge payoffs

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This Giving Tuesday, I've got some good science to show why you should donate to #MEAction and other advocacy organizations! The study Disease Politics and Medical Research Funding: Three Ways Advocacy Shapes Policy sets out to discuss single-disease interest groups and their influence on US politics: "This article explores their effects on federal ...