Cort gives more detail about Solve ME/CFS's 25 March event and it sounds potentially very productive. You can help persuade the media and congress reps and decision-makers to act! We've been waiting for initiatives to pressure the NIH for more funding using the IOM report as a weapon and this is the first big one.
If you want some inspiration, Ryan Prior has been running a series of answers from patients on his FB page over the past week, here. I don't know if anyone has the time to type a few out, for those who don't have FB and can't see them - there are some great responses!
Crack on, folks! This could be a hugely important meeting and this is a great idea for advocacy - very novel, and it humanises us.
Can someone bump this thread when the US wakes up? I won't be on the forums for the rest of today.
Cort on Health Rising said:On March 25, the Solve ME/CFS Initiative will host a briefing on the Institute of Medicine report in Washington, D.C. The briefing, which will include media, congressional leaders and executive branch decision-makers, is intended to further the IOM report momentum and turn the report into action, particularly by urging additional federal research funding.
The briefing will feature three speakers:
- Morgan Fairchild, Actress, Activist and Former Patient
- Dr. Ellen Wright Clayton, Chair of the IOM Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
- Carol Head, Solve ME/CFS Initiative President/CEO
Solve ME/CFS said:We also plan to include a slide display before the briefing with quotes from patients that answer the question, “What would you do if you were well?” Our hope is that the responses will demonstrate to those present the devastation and debilitation ME/CFS patients suffer as a result of the disease and why the need for more research funding is crucial. Please click here to respond – it will only take a moment:
If you want some inspiration, Ryan Prior has been running a series of answers from patients on his FB page over the past week, here. I don't know if anyone has the time to type a few out, for those who don't have FB and can't see them - there are some great responses!
Crack on, folks! This could be a hugely important meeting and this is a great idea for advocacy - very novel, and it humanises us.
Can someone bump this thread when the US wakes up? I won't be on the forums for the rest of today.