Following the global day of action on May 12, 2018, #MEAction gathered photos and petition signatures from people all over the world and mailed it to Director of the NIH, Francis Collins (see letter). Along with your beautiful photos and anecdotes, we delivered a list of demands, including a meeting with #MEAction. We also asked for your help to reach out to Collins and put pressure on the NIH to respond to our demands. Your hard work paid off.
Now, we want to share that we received a response from the NIH. The date listed on the letter is June 25th, but we received it in July. We have taken our time to read it over, gather our thoughts, and formulate the best way to approach our next steps. You can read the full letter here.
We are still demanding a meeting with Francis Collins to push him to concrete action. We are waiting to hear from Francis Collins on when he will be meeting with us. We will keep you updated with any further development.
Welcome to June’s #FacetsOfME! Facets of ME is an educational feature where we dive into a particular aspect (or facet) of ME and explore it more in depth. This month we are focusing on temperature dysregulation- heat and cold intolerance. It is surprising how difficult this symptom can be to manage until you experience it.