On May 25, 2016, we did something extraordinary together: we held the largest, loudest protest ever held for ME/CFS.
We came out in force: in Boston, Dallas, San Francisco, Seattle, Washington D.C., Raleigh, and Atlanta; in London; in Melbourne; in a Canada-wide virtual protest; in Bergen, Norway; and in Belfast, Northern Ireland. Impromptu shoe displays popped up in Ottawa and the Netherlands. Thousands of patients, caregivers, clinicians, and stakeholders raised their voices together to demand better funding, better medical education, and government oversight for this overlooked, underfunded illness.
We received unprecedented media coverage for the protest. We met with our government officials as part of a coordinated effort from multiple advocacy organizations, meeting with over 20 U.S. Congress members and numerous HHS officials to discuss the demands, and the way forward.
And we can and will do more. We can and will get louder. We can and will be stronger.
Join the protest September 27, and raise your voice up alongside thousands of others until it shakes the government and the public awake. Let them know that anyone can get this illness. It is a public health emergency. And we can all do something about it.
Want to lead a protest? #MEAction can help get you oriented and provide you with materials.
Email [email protected] if you are interested in leading a protest!
Not sure you can handle it on your own? Assemble a small team of leader-volunteers in your area.
Or, click below to join our Facebook #MillionsMissing volunteer group!
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In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the