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Category Archives: Advocacy

Evelien’s Journey to Meet the EU Parliament

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Hi everyone! First of all I would like to express my heartfelt thanks to all who contributed to the success of the petition that asks for the EU to fund biomedical research on ME. So many people helped out by writing to their MEPs, translating documents, making phone calls, sharing the ...
NICE Call for Evidence response #MEAction UK

NICE Called for Evidence: Read #MEAction UK’s Response

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The National Institute for Health and Care Excellence (NICE) are re-writing their guidelines on ME. As part of this they issued a call for evidence relating to three topics. #MEAction UK has now submitted our full response, collecting studies, surveys and data from multiple sources.   #MEAction UK also wrote, circulated and ...

Status Update On #MEAction’s Congressional Work

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#MEAction’s Congressional Committee team has been very busy this year. We want to give you a status update and alert you to an ongoing action you can pursue. Appropriations Since March of this year, #MEAction, in partnership with the Solve ME/CFS Initiative and MassME/CFS & FM Association, has been working to increase ...

Are you Disabled? How does ME fit into the Disabled People’s Movement?

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Values & Policy Initiative Learn more This article is part of our Values & Policy Initiative, a six-month long process for the community to come together to learn and discuss our core values, tactics and positions so that we are more unified in our work as a large, diverse community. This process will culminate in a statement of ...

Inside / Outside Activism: Why We Must Shout in the Streets and Sit at the Table.

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Values & Policy Initiative Learn more This article is part of our Values & Policy Initiative, a six-month long process for the community to come together to learn and discuss our core values, tactics and positions so that we are more unified in our work as a large, diverse community. This process will culminate in a statement of ...

ME Activist Testifies before EU Parliament

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Today Evelien Van Den Brink spoke powerfully and brilliantly to the Committee on Petitions in the European Parliament from her stretcher. Evelien laid out both an emotional and scientific appeal for biomedical funds for ME. She ended her appeal by saying “On behalf of all patients, I am asking you, please ...

Colorado Activist Introduces Rotary Club Resolution for ME

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Colorado activist, Jim Lutey, has introduced a Rotary Club resolution to encourage research, education and funding for myalgic encephalomyelitis (ME!) The resolution’s purpose is to “leverage Rotary’s worldwide reputation and expertise on polio eradication to raise awareness on the need to educate the public and medical practitioners on the importance of ...

Postcards to Doctors returns!

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Great news!  Postcards to Doctors has relaunched as of today, October 1!  You can now request new postcards and addresses here.  If you requested postcards or addresses during the month of September, we've resumed generating addresses and sending postcards as of today, and you should receive yours within the next ...

Why Civil Disagreement and Respect are Essential to the ME Movement

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VALUES & POLICY INITIATIVE Learn more This article is part of our Values & Policy Initiative, a six-month long process for the community to come together to learn and discuss our core values, tactics and positions so that we are more unified in our work as a large, diverse community. This process will culminate in a statement of ...

Why We Must Build an Open, Grassroots Movement

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Listen to the article:  Values & Policy Initiative Learn more This article is part of our Values & Policy Initiative, a six-month long process for the community to come together to learn and discuss our core values, tactics and positions so that we are more unified in our work as a large, diverse community. This process will culminate ...