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Category Archives: Country

How to Represent ME at the Women’s March

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#MEAction Colorado is organizing a small cohort to join the Women’s March in Denver this Saturday, Jan. 19th. (See details.) We plan to walk the shorter, ADA-friendly route with empty wheelchairs displaying signs that say, “Too ill to be here,” listing names of Colorado people who cannot participate due to ...

Are You a Young Person Affected by ME? How do you Visualize Health Equity? Join a National Contest

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The U.S. National Academy of Medicine (NAM) is holding a contest for young people (ages 5 to 26) to submit art, music, writing, videos, dance, etc. related to social determinants of health equity. This is an excellent opportunity for youth with Myalgic Encephalomyelitis (ME) - and their friends and siblings - ...

Tell NICE your experience of CBT/GET. Take the survey now!

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The National Institute of Health and Care Excellence (NICE) is rewriting the UK ME guidelines. As part of this process, the Forward-ME Group, of which #MEAction UK is a member, has prepared a questionnaire to provide additional evidence on cognitive behavioural therapy (CBT) and graded exercise therapy (GET) to NICE ...

Comment on Australia’s National Draft Report on ME/CFS – Open to Global Feedback

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Australia’s NHMRC has released the ME/CFS Advisory Committee’s draft report for public consultation. The public consultation process will remain open until Monday February 18, 2019 ...

Enrolling: NIH Focus Group on PEM

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Overview The NIH is currently looking for volunteers with ME/CFS to participate in a focus group that will be used to learn more about PEM in daily life as well as to hear about your experiences with Cardio Pulmonary Exercise Testing (CPET) if you have experienced it. Who: The study is run out ...

Study Shows that Red Blood Cells are Stiffer in People with ME

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Researchers have published a paper that shows various measures of deformability in the red blood cells of people with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) indicating that they are significantly stiffer in people with ME/CFS than those from healthy controls. The observations suggest that red blood cell transport through microcapillaries may explain, ...

2018 ME/CFS Research Summary

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Commissioned and originally published by the Solve ME/CFS Initiative. Be sure to check out their interactive guide here. Follow Rochelle on Medium. 2018 was a pivotal year for ME/CFS research, yielding over 200 publications specifically addressing various aspects of ME/CFS. Foundational work emerged from prominent biomedical scientists around the globe, leveraging ...

A Year in Review: Celebrating the 2018 Achievements of Our Community

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2018 has been a big year at #MEAction!  Thank you to all of you who have put forth immense efforts to improve the lives of people with myalgic encephalomyelitis (ME). #MEAction has grown over the past year in leaps and bounds, and we cannot wait to do more. We will not end ...

#MEAction Responds to NIH

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As many of you know, #MEAction activists for myalgic encephalomyelitis (ME) met with the director of the National Institutes of Health (NIH), Dr. Francis Collins, on December 7 to discuss accelerating research in order to more rapidly provide diagnostics and treatments to people with ME. To read about the details of ...

Advocacy Round-Up: End-of-Year, 2018

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Our community's advocacy work end with a big finale with our meeting with the director of the U.S. National Institutes of Health (NIH)!  Catch up on the latest global news from the past few months. U.S. NIH #MEAction representatives met with the National Institutes of Health (NIH) director, Dr. Francis Collins, and other ...