Advocacy Archives

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

October 3, 2019 3 Comments

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 principles and values as well

ME Activist Testifies before EU Parliament

October 3, 2019 No Comments

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 don’t look away. We

Colorado Activist Introduces Rotary Club Resolution for ME

October 3, 2019 No Comments

Colorado activist, Jim Lutey, has introduced a Rotary Club resolution to encourage research, education and funding for myalgic encephalomyelitis (ME!) [maxbutton id=”17″ url=”http://www.meaction.net/wp-content/uploads/2019/10/me-cfs-resolution-proposed-by-dist.-5440-3-13-2019-4-1.pdf” text=”Read the Resolution” ] 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

Postcards to Doctors returns!

October 1, 2019 4 Comments

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 few weeks. Want to learn

Why Civil Disagreement and Respect are Essential to the ME Movement

September 29, 2019 1 Comment

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 principles and values as well

Why We Must Build an Open, Grassroots Movement

September 25, 2019 3 Comments

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 in

Brussels will Discuss EU Petition to Fund Biomedical Research for ME

September 18, 2019 4 Comments

Great news! Remember the petition that asks the EU to fund biomedical research on ME? It will be discussed at the meeting of the Committee on Petitions on October 3rd 2019 in Brussels! It is scheduled for discussion at around 11:05 CEST. Francis and Evelien have been working on this project for over a year

NICE Call for Evidence on ME guidelines

September 3, 2019 No Comments

The National Institute for Health and Care Excellence (NICE) have put out a call for evidence in relation to the ongoing update of their ME/CFS guidelines, due to be published in October 2020. This is an opportunity to ensure that all relevant information is held by the guideline development committee as they work to assess

#MEAction’s Postcards to Doctors is an Unprecedented Success!

August 30, 2019 No Comments

#MEAction’s Postcards to Doctors initiative has been successful beyond our wildest hopes! Since August 1, we’ve received requests for more than 3,500 postcards from hundreds of individuals and groups. People from all over the United States have signed up to write to their clinicians asking them to take #MEAction’s CME program – we’ve sent out

NICE drag their feet on stopping the harm caused by GET and CBT

August 27, 2019 No Comments

As part of our ongoing advocacy work, #MEAction UK has been campaigning for the National Institute for Clinical Excellence (NICE) to update the current ME guidelines. Updated ME/CFS guidelines are due to be published in October 2020. However in the meantime, the existing guidelines published in August 2007 that recommend Cognitive Behavioral Therapy (CBT) and

Category: Advocacy