Tag: #MEAction

#MEAction Policy Change: ME, not ME/CFS

The staff of #MEAction, who run the communications platform that is our website, social media channels, and email list, have decided to adopt ME or myalgic encephalomyelitis for future communications about the disease, except where the name CFS or Chronic Fatigue Syndrome needs to be mentioned for the sake of clarity and to effectively communicate

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Advocates and scientists respond to NIH’s Request for Information

Leading scientists, organisations and patients around the world have responded to the US National Institutes of Health’s (NIH’s) Request for Information to guide its research strategy on ME/CFS. It is the first time that the NIH has asked for public input on the disease. The request, made in May, drew public responses from Dr. Ronald

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Join #MEAction's three 3 protest and policy meetings

Calling all ME activists, allies and advocates. #MEAction is gearing up for some major actions that need your input. Now is a great time to join the conversation to a) shape the structure of your advocacy organization, and b) organize the #MillionsMissing protest for September. Even if you’re not ready to dive in yet but you

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Announcing the Winners of #MEAction's Poetry Contest!

#MEAction is pleased to announce the winners of the 2016 #MillionsMissing Poetry Contest. We were astounded by the number of submissions we received and we would like to thank everyone who produced such incredible work! We hope that this will become an annual tradition and that even more people will participate in the future. With

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New Bill Would Up NIH/FDA Funding For Neglected Diseases

Last Thursday, Elizabeth Warren (D-MA) and Patty Murray (D-WA) introduced an important new bill which seeks to increase funding for biomedical innovation and targeting diseases with unmet treatment needs. The $5 billion proposal, called the National Biomedical Research Act, is just one of six bills now being discussed by the Health, Education, Labor & Pensions

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Unity in activism: on abusive attacks within the ME community

“Facts are stubborn things; and whatever may be our wishes, our inclinations, or the dictates of our passion, they cannot alter the state of facts and evidence.”   —John Adams   “Coming together is a beginning. Keeping together is progress. Working together is success.”   –Henry Ford In light of recent gratuitous and profane attacks

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