Here is the community letter to the Surgeon General:
Surgeon General Dr. Vivek Murthy,
Congratulations on your nomination and recent confirmation to serve once again as the United States’ Surgeon General. We recognize the role of America’s Doctor during this time is no easy task and to be willing to serve twice speaks a lot about your character and your commitment to America’s public health.
As you return to this role in the midst of a global pandemic, you are undoubtedly preparing for the challenges to come and the challenges we have yet to overcome as a nation. We want to make sure you know that our community is expected to double as a result of the COVID-19 pandemic. Myalgic encephalomyelitis (ME), or often referred to as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), is a chronic, complex illness that is often developed after an infection in 80% of cases. Evidence is mounting that a significant percentage of individuals will go on to develop ME after having COVID-19.
#MEAction is an advocacy organization that focuses on building a global movement to fight for recognition, education, and research so that, one day, all people with ME will have support and access to compassionate and effective care. One of #MEAction’s major community programs is #MillionsMissing, where we recognize the millions of people who are missing from their previous lives due to ME, and now the #MillionsMore missing from their former lives due to long COVID. Our program is aligned with May 12th, ME/CFS International Awareness Day and used across the globe to drive awareness and action.
Your recent book, Together: The Healing Power of Human Connection in a Sometimes Lonely World, highlights how important it is to find community and build a more connected world. As the majority of the ME community is homebound and unable to work, plus stigmatized for their illness due to a lack of knowledgeable doctors or treatment options, people with ME deal with incredible isolation and despair. The Long COVID community is beginning to experience this as well. In your role as Surgeon General, you can help to combat the massive social isolation our chronic illness community struggles with due to persisting stigmatization and the overwhelming lack of education on ME.
One of this year’s themes for #MillionsMissing is You Are Not Alone to remind the ME community and the long COVID community that in spite of the loneliness we feel, there is a large, supportive community here with us.
With this theme and your knowledge around the power of human connection, we are asking the Office of Surgeon General to show support for those with ME and those who will become diagnosed with ME following COVID-19 in the years to come.
Here are two ways you can show your support:
Tweet out your support: I support the #MillionsMissing from #MEcfs. #YouAreNotAlone in your fight for health equity.
Agree to a meeting with the #MEAction community: Ben HsuBorger, Director of US Advocacy, for #MEAction has requested a meeting with you to discuss ME, the challenges this community faces, and how you can help us raise awareness and advocate for treatments. Will you agree to meet with our community? Email [email protected], and we will be grateful to share our stories with you.
Again, we hope through the idea that connection and togetherness is vital to health, we are able to connect on how the Office of Surgeon General can support the ME community.
Thank you for your time,
All of us at #MEAction and the #MillionsMissing