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Category Archives: Advocacy

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How did your local ME service perform?

Earlier this year #MEAction UK wrote, distributed and analysed a survey in response to The National Institute for Health and Care Excellence (NICE) releasing a call for evidence as they rewrite the ME guideline. Our full report from that survey found that ME/CFS services in the UK are not fit ...

Host a Postcards to Doctors party this holiday season!

Host a Postcards to Doctors party this holiday season! And announcing: #MEAction's first Pinterest boards! Together, the #MEAction community has made the Postcards to Doctors initiative an incredible success: there have been approximately 5,500 requests for postcards to doctors across 43 states! We are so thankful to see people across ...

NIH: Dr. Koroshetz Declines to Take Urgent Action for ME. Read His Response and Take Action!

NINDS Institute director, Dr. Walter Koroshetz, has made it clear that neither he nor the National Institutes of Health (NIH) are ready to take the immediate actions needed to address the crisis of myalgic encephalomyelitis (ME). In response to #MEAction’s recent letter calling on the NIH to ACTION now for ...

Read Dr. Koroshetz Response to Our Letter Calling for Action. We Analyze His Claims.

NINDS director, Dr. Walter Koroshetz, sent the following response to #MEAction’s Oct. 21st letter calling on the NIH to take immediate actions to address the crisis of myalgic encephalomyelitis (ME). We analyze Dr. Koroshetz letter in blue text below to put his statements into context with the reality of what ...

Postcards to Doctors Featured Artist: Lia Pas

#MEAction’s Postcards to Doctors initiative has continued to be an incredible success! Thanks to the hard work of the #MEAction community we have sent postcards to nearly 6,000 clinicians across the United States. We could not have done this without the invaluable contributions from the artists who designed our postcards ...

UK General Election Guide Now Available

The UK is set to go to the polls on 12 December 2019. #MEAction UK has prepared a guide ahead of the General Election with information on how to register for voting, different ways of voting (postal, proxy, etc), information about candidates and tips on raising awareness about myalgic encephalomyelitis ...

Evelien’s Journey to Meet the EU Parliament

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 ...
NICE Call for Evidence response #MEAction UK

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

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 ...

Status Update On #MEAction’s Congressional Work

#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 ...

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

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 ...