Tag: #MillionsMissing

Whether I like it or not

Over the years I discarded several pairs of shoes. I no longer felt comfortable wearing high heels, nor needed aerobic shoes, or did not have the stamina for a pair of boots that were simply too heavy. With hindsight, I should have kept that pair of boots, because it might have been helpful with losing

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Join the NYC #MillionsMissing Protest

The NYC #MillionsMissing Protest has a full agenda and they are excited to announce several major speakers in attendance including local NYC ME/CFS physician (and Chair of the Chronic Fatigue Syndrome Advisory Committee), Dr. Susan Levine. In addition, local physician-scientist Dr. Mady Hornig from the Columbia University Center for Infection and Immunity (and the ME/CFS Microbe Discovery Project) will also be in attendance. NYC will also have several patients and caregivers tell their personal stories. If you plan to attend and would like to share your story at the protest, please contact them. Finally, as opposed to the shoe display used at other locations, NYC will be doing a unique display using balloons and posters.

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Visit the new #MillionsMissing website!

Ever since the #MillionsMissing protests in May, volunteers have been working on a new site design for #MillionsMissing, and we are pleased to announce that it has just launched. The new site is the work of professional designers and programmers who have generously donated their time to make this happen, as well as numerous volunteers

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Add your voice to the #MillionsMissing Thunderclap!

The #MillionsMissing are using Thunderclap to amplify our message.  Between now and September 27, sign up here and promote your participation on social media.  If you have any social media account, including Facebook, Twitter, or Tumblr, you can sign up and add your voice to that of other #MillionsMissing and allies. How does a Thunderclap

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Join the #MillionsMissing fundraising team!

With the help of our community’s ingenuity, strength, and indomitable spirit, #MEAction has: Spearheaded a petition to release the PACE trial data, garnering over 12,000 signatures.  This was presented in the recent FOI request to release PACE data as evidence of peaceful patient involvement Launched the worldwide protest #MillionsMissing in 12 locations to raise awareness

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Urgent: Take part in the US Congressional Call to Action

#MEAction reported recently that the #MillionsMissing protests led to a number of meetings with government officials, including a meeting with Assistant Secretary for Health and Human Services Karen DeSalvo, and several meetings with congressional representatives. Continued work from the Congressional team at #MEAction has yielded fruit. [pullquote align=”left” cite=”” link=”” color=”” class=”” size=””]Reps Zoe Lofgren

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Empty shoes

A few years after getting ill, I discovered that I can write interesting stories about things that happen inside or close to my home. For instance about birds or cats visiting our garden (preferably not at the same time), books, music or even what we had for dinner. This time it is about my shoes, my empty shoes. Who needs shoes while lying on the sofa, anyway?

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Quick Update: #MillionsMissing Meeting with Dr. DeSalvo

Last week, MEAction announced that Jen Brea, Terri Wilder, Carol Head, Jennie Spotila, and Mary Dimmock would be meeting with Dr. Karen DeSalvo, Assistant Secretary of Health on August 1. The purpose of that meeting, which happened yesterday, was to impress upon Dr. DeSalvo how woefully inadequate HHS’s response to this disease has been and

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