I am honored to have been nominated for a WEGO Health Activist award in the Best in Show: Blog category! You can see my profile page, and endorse the nomination if you are so inclined, here.
To create my profile page, I had to write a description of what I try to do here. It was actually amazing to me when I thought about all the subjects I’ve covered here since creating the blog in February 2012. I devote most of my advocacy energy here: to researching and writing posts to help other advocates in the work they do, and to sharing my personal experiences with treatment and coping. It’s a lot of work, and I have sacrificed other things I want to do in order to keep writing here.
I am deeply grateful to the person who nominated me, and to everyone else who has told me how much this blog means to them or has helped them. Working in isolation means I send these posts out into the world, not knowing if they will be read or if they will help anyone. I’m humbled to hear that you appreciate what I’m doing.
My profile description reads like a year-in-review, and if you find Occupy CFS helpful to you, then I hope you will consider endorsing my nomination. Whether or not you click the endorse button, I thank you for reading my blog and sharing this journey with me.
I started my blog, Occupy CFS, in February 2012 with one goal: to give voice to what it means to have ME/CFS. I write about the full spectrum of living with ME/CFS. I’ve investigated NIH funding for ME/CFS research, and I’ve written extensively about the federal CFS Advisory Committee. I have filed multiple Freedom of Information Act requests and have reported my findings through the blog in an effort to create accountability for the government’s actions. I have personally participated in opportunities to provide public input, such as public comment at the Advisory Committee meetings, testimony to a Senate hearing on chronic pain, and FDA public meetings on ME/CFS, and have encouraged other advocates to participate as well. I was accepted into the FDA’s Patient Representative Program this year, and have been sharing what I’ve learned with the community.
Research findings and application to clinical care are a big concern for ME/CFS patients. I try to explain the complicated science in simple ways so that patients can understand and use the information. Sometimes, inaccurate information is published in medical journals and I discuss that on the blog, and co-authored a letter published in the journal American Family Physician.
My blog is not just about politics and research. I’ve documented my own advanced exercise testing and experimentation with medications and behavioral techniques (like pacing). I have written very personal essays about my inability to have children and my spiritual struggle to live with ME/CFS. I posted a video of myself on a bad crash day to show people what it looks like.
Through all of my writing, I am motivated by a fundamental goal: to speak the truth about living with ME/CFS. Too many patients live in isolation and disability, invisible to the world. We routinely conceal or minimize our suffering, even with family and friends. No more! I want to give voice to the struggle. I want patients to use information as power. That is my mission on my blog.