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.
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