NEW for @PsychToday: A march on Washington of those too sick to leave to leave bed.

I report on Friday's #MillionsMissing event in DC. As officials declare end to pandemic, #longcovid & #mecfs patient groups set up 300 empty beds on National Mall.

bit.ly/3MxyNmK With red blankets topped with white pillows, the beds seemed reminiscent of the women with red cloaks and white bonnets in The Handmaid’s Tale, a metaphor that for chronic illness sufferers might be fitting given their own movement building solidarity amid gaslighting.

Celebrating a great book review of “The Long Haul” in @ScienceMagazine. One of many beautiful capstones to this journey of writing and research with @NeuroWeaverGSU. Science says the book is a “compelling and moving picture” that is “infused with empathy.” Hiring Liz to help w/ research was one of the best decisions I made in the writing process. Personnel is policy. First, she’s a neuroscientist & academic. Second, she has experience w/ non-fiction authors. Third, she’s a chronic illness patient. And she brings LGBT perspective.

Today for @openmind_mag, I have a big new essay about #longcovid, #mecfs, and how we’ve surpassed a historic pivot point in the scientific understanding of post-infectious disease. openmindmag.org/articles/gasli… First, the essay owes plenty to @ahandvanish, @LisaAMcCorkell, @EricTopol, and @julialmv, whose recent paper in Nature was a tour de force in summing up hundreds of recent studies about the biological basis of #longcovid, and its historic context in post-infectious disease.

"The Long Haul" is officially *published* today. It's the story of millions with #longcovid, including me, a science writer. It's the story of how patients collectively found their voice, how they fought for change, how the world will benefit. amzn.to/3UY15br Millions with got sick with #Covid. And they stayed sick. Public health leaders were befuddled by the "new disease." Patients found each other online. They forged a community. They built a movement. They named the disease, endured it, researched it, and called for change

Journalists on the #longcovid and #disability beats: Protest scheduled outside White House on Mon 9/19 at 12pm. Dozens disabled by #mecfs and post-viral illness may be arrested as they sit down to rest. Great visuals, and a window into a major story. millionsmissing.meaction.net/protest2022/ This is a direct action in the style of how ACT UP raised the alarm about HIV starting in the 1980s. New pandemic, similar playbook: putting bodies on the line to calling for more medical research, clinical trials, education campaigns, and economic support for patients.

Another key finding in my own recent #mecfs lab work: cortisol, the stress hormone, came back normal, a rarity for me in all the tests we’ve run since 2007. Low cortisol is one of many culprits in fatigue/PEM, and is a key finding in #longcovid by @PutrinoLab, et al. You need cortisol to be able to respond to stressful situations, and an inability to reckon with even the smallest stressors (a slightly challenging phone call, for instance) could suggest cortisol deficiency is a factor. Its one more frequent abnormality long haulers should know

Here are some of my favorite books, usually memoirs, written by authors showing how life-changing disease transforms us physically, mentally, and spiritually. These are my inspirations in my writing: First is brain surgeon Paul Kalanithi’s memoir “When Breath Becomes Air.” The 2017 Pulitzer Prize finalist chronicles his journey through fatal lung cancer. It’s about all the things that make worth living and how to best use our dwindling time on earth