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.
#MillionsMissing refers to millions of #mecfs patients missing from their lives, and millions (billions, really) of dollars in lost wages missing from the economy. Millions more patients could go missing due #longcovid. What's needed is an urgent, ambitious national action plan.
About half of those with #longcovid could have #mecfs, Highlighting this fact -- along with the right types of research -- is key to helping us navigate the labor shortage, and empowering millions with post-viral illness to keep pursuing their dreams of career and family.
I've been on the board of @MEActNet since 2015, and am proud to see the org out front leading, staying true to its roots, calling for innovative policies, and pointing the way for a brighter future. This is what I signed up for on day one.
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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
And speaking as a patient, cortisol can vary throughout the day, so the more ideal look is via a saliva test drawn at multiple times in one day. As with many things, medicine often just simply doesn’t gather enough data & therefore can miss real and obvious issues
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
Another key one is @rgay’s “Hunger.” In reading a queer woman of color’s lifelong relationship to obesity and body shape, a few childhood traumas drove a lifetime of eating behaviors. Each of us has an “unruly body” somehow. Acknowledging that validates our humanity